Bipolar Disorder: an Exploratory Analysis of the Lived Experience

Home , Touched with Fire

Bipolar Disorder: An Exploratory Analysis of the Lived Experience

Dr Tessa Kristine Wigney

UNSW School of Psychiatry and The Black Dog Institute Faculty of Medicine

2010

THE UNIVERSITY OF NEW SOUTH WALES Thesis/Dissertation Sheet

Surname or Family name: WIGNEY

First name: TESSA Other name/s: KRISTINE

Abbreviation for degree as given in the University calendar:

School: PSYCHIATRY Faculty: MEDICINE

Title: BIPOLAR DISORDER: AN EXPLORATORY ANALYSIS OF THE LIVED EXPERINCE

Abstract 350 words maximum

This thesis explores the lived experience of those with Bipolar Disorder type I or type II condition. The aim is to delineate how individuals cope following the diagnosis of this chronic, recurrent mental illness. Twenty participants were interviewed in depth, producing 18 hours of recordings and 480 pages of transcript. Narrative data were thematically analysed to reveal themes common to the process of adaptation. The exploratory framework identified key elements of the lived experience of bipolar disorder, including: the phenomenology of highs and lows, the role of anxiety in triggering episodes, reactions to diagnosis, and issues with prescribed medications. Analyses highlighted how difficult it is for individuals to reconcile themselves to the symptoms and consequences of the illness, and also illustrated the extent of subjective distress and reduced quality of life incurred. The psychosocial burden, particularly the difficulties developing a sense of authenticity and coherent identity, and having to adjust life goals, were examined in detail. Negative coping behaviours, specifically the use of alcohol and drugs, as well as the influence of shame and guilt on peoples’ coping repertoires were also explored. Finally, the importance of psychosocial interventions, collaborative health care strategies and necessity for long- term, follow-up care were emphasised.

Declaration relating to disposition of project thesis/dissertation

I hereby grant to the University of New South Wales or its agents the right to archive and to make available my thesis or dissertation in whole or in part in the University libraries in all forms of media, now or here after known, subject to the provisions of the Copyright Act 1968. I retain all property rights, such as patent rights. I also retain the right to use in future works (such as articles or books) all or part of this thesis or dissertation.

I also authorise University Microfilms to use the 350 word abstract of my thesis in Dissertation Abstracts International (this is applicable to doctoral theses only).

…………………………………………………………… ……………………………………..……………… Signature Witness

The University recognises that there may be exceptional circumstances requiring restrictions on copying or conditions on use. Requests for restriction for a period of up to 2 years must be made in writing. Requests for a longer period of restriction may be considered in exceptional circumstances and require the approval of the Dean of Graduate Research.

______

FOR OFFICE USE ONLY Date of completion of requirements for Award:

Table of Contents

Originality Copyright and Authenticity Statements 1 Abstract 2 Acknowledgements 3 Introduction 4 PART ONE: THE FRAMEWORK 6 Mania: An Historical Perspective 7 Literature Overview 30 Methodological Considerations 46 PART TWO: ON THE PATH TO BIPOLAR DISORDER 61 Onset and Awareness of Symptoms 62 Phenomenology of the Highs 70 Characteristics of the Lows 91 Anxiety: Pathway and Trigger? 100 PART THREE: IMPACT OF DIAGNOSIS 118 Issues Related to Diagnosis 119 Experience of Medication 136 Identity Issues 147 PART FOUR: VICISSITUDES OF LIVING WITH BIPOLAR DISORDER 160 Exploring Distress and Psychosocial Burden 161 Influence of Achievement Striving and Goal Setting 172 Negative Coping: Drugs and Alcohol Use 182 Consequences of Shame, Stigma and Guilt 195 PART FIVE: MOVING FORWARD 204 Coping and Adaptation 205 PART SIX: Reflecting Back, Looking Forward 231 Appendix A: Diagnostic Criteria 237 Appendix B: Concept of the Bipolar Disorder Continuum 240 Appendix C: Interview Guide 241 Appendix D: Participant Questionnaire 243 Appendix E: Participant Information Statement and Consent Form 245 Appendix F: Invitation Letter to Writing Competition Entrants 248 Appendix G: Awareness of Early Symptoms 249 Appendix H: Advice to the Newly Diagnosed 254 REFERENCES 257

Originality Statement

‘I hereby declare that this submission is my own work and to the best of my knowledge it contains no materials previously published or written by another person, or substantial proportions of material which have been accepted for the award of any other degree or diploma at UNSW or any other educational institution, except where due acknowledgement is made in the thesis. Any contribution made to the research by others with whom I have worked at UNSW or elsewhere, is explicitly acknowledged in the thesis. I also declare that the intellectual content of this thesis is the product of my own work, except to the extent that assistance from others in the project’s design and conception or in style, presentation and linguistic expression is acknowledged.’ Copyright Statement

‘I hereby grant the University of New South Wales or its agents the right to archive and to make available my thesis or dissertation in whole or part in the University libraries in all forms of media, now or here after known, subject to the provisions of the Copyright Act 1968. I retain all proprietary rights, such as patent rights. I also retain the right to use in future works (such as articles or books) all or part of this thesis or dissertation. I also authorise University Microfilms to use the 350 word abstract of my thesis in Dissertation Abstract International (this is applicable to doctoral theses only). I have either used no substantial portion of copyright material in my thesis or I have obtained permission to use copyright material; where permission has not been granted I have applied for a partial restriction of the digital copy of my thesis or dissertation.’ Authenticity Statement

‘I certify that the Library deposit digital copy is a direct equivalent of the final officially approved version of my thesis. No emendation of content has occurred and if there are any major variations in formatting, they are the result of the conversion to digital format.’

Signed

Date

Page | 1

Abstract

Page | 2

Acknowledgements

In grateful acknowledgement of the 2006 Black Dog Institute Research

Scholarship, funded by a generous donation from Bluesand Foundation Pty Ltd.

To the generosity of spirit of the twenty individuals who shared their stories…

To Sue, who was the first to encourage me, and was so gracious and accommodating of my decision…

To Mira, who gave constructive feedback…

To Zhi, Lyndall and Kerrie, who never failed to ask: “How’s it all going?” and to all my other friends, who remained understanding and patient during my social hiatus…

To my sister Sonja, who was there to de-brief and help with the conclusion and never minded that study took away from important Auntie duties…

To Grandma and Pop, who did not have the chance to study at University, but from whom I inherited my curiosity for knowledge and passion for articulating ideas...

To Mum, who gave me wings, and for reminding me that the simple things in life are best…

To my furry friend Kippy, who shared my chair and kept me company in the long hours of solitude…

To my precious Nico, who wined and dined, massaged and mopped up tears, and who has always supported me in following my dreams…

To the Top Dog ‘G’, who saw my potential, bestowed his faith and keeps opening doors…

∞ I finish this Doctorate in your honour ∞ WOOOO HOOOO!!!

Page | 3

Introduction

Bipolar disorder is a chronic affective mood disorder that is ranked sixth out of the top ten causes of disability in the world. It is a significant contributor for disease burden and one that is highly correlated to substance abuse, anxiety disorders and risk of suicide. The illness also causes considerable problems in academic performance, career and employment options, interpersonal relationships and finances over a lifetime – a reality which is not helped by the high rate of diagnostic delay, typically between ten and twenty years.

The impairment of bipolar disorder is significant and chronic, not only impacting economically through lost productivity, unemployment and the strain on the health system, but, more crucially, through the creation of heavy psychosocial distress and interruption of life goals. Despite this, there has been little systematic investigation into the illness, while research continues to lag behind other mental illnesses, such as depression and schizophrenia, and does not compare with the rate of enquiry into management of other chronic physical illnesses such as diabetes or HIV/AIDS. There is also limited examination of how people integrate bipolar disorder into their lives, and of the strategies used to stay well and move forward beyond the confines of illness, particularly from a qualitative perspective.

This thesis attempts to shine a light on the subjective experience of the condition, in order to illuminate how individuals cope, not only with the impact of diagnosis, but with the ‘collateral’ damage following episodes and the rigours of self-management strategies that necessitate regulation of lifestyle routines, reduced spontaneity and stimulation, constant vigilance and acceptance of a medication regime. This thesis examines the subjective experience of bipolar disorder. The aim is to illuminate how individuals cope with the impact of the diagnosis on their lives and their sense of identity, and the ‘collateral damage’ following episodes. This thesis will highlight how learning to adapt to bipolar disorder is extraordinarily difficult and typically involves a complex process of trial and error, cost/benefit analysis, negotiation and sustained work on ones’ identity.

The thesis is divided into six parts. Part One – The Framework - introduces the historical origins of the medical concept of mania, before turning to an overview of the literature and an outline of the methodological rationale. Part Two – On the Path to Bipolar Disorder - discusses the rate of insight into the early onset of symptoms before unpacking the phenomenology of the highs and characteristics of the lows. The significance of anxiety, particularly in relation to early negative childhood experiences, is then examined in terms of being a possible pathway and trigger to the

Page | 4

development and relapse of bipolar disorder. Part Three – Impact of Diagnosis - explores the complex issues related to being diagnosed with a chronic affective illness and the complexities involved in being prescribed medication, and decisions about adherence. The significant impact on identity development is then discussed, particularly in terms of loss of a sense of coherence and authenticity. Part Four – Vicissitudes of Living with Bipolar Disorder - explores in depth the specific experiences of distress and psychosocial fallout of the condition. Investigation of the phenomenon of high goal setting and achievement striving, and the consequences of these drives on identity and coping, are then examined. Also included in this section is an investigation of negative coping styles through the use of drugs and alcohol, as well as exploring the consequences of shame, guilt and stigma on people’s ability to cope. Part Five – Moving Forward - outlines in detail the process of adaptation and examines the most common self-management strategies used to cope with the oscillations of energy, mood and behaviour over time. Part Six – Reflecting Back, Looking Forward - provides as concise summary of the findings and points to possible future directions of research for this condition.

Page | 5

PART ONE The Framework

Page | 6

Mania: An Historical Perspective

The focus of this chapter is to trace when mania and depression were recognised as poles of the same disease and understand how psychiatric classification of bipolar disorder developed over time. While mania and melancholy are two of the earliest described mental disorders, the link between the two diagnostic categories was not generally recognised. Although melancholia has a long history of clinical description, the attention given to mania was more limited. As an episode of mania and/or hypomania, in conjunction with the experience of melancholic depression, is taken as a specifier for bipolar disorder, explicit effort has been made here to concentrate on the incidence and description of mania, rather than of depression. Thus, the origin of the concept of mania is traced from antiquity to modern days to analyse how the disorder emerged as a specific disease category with concrete criteria. Although there are certain exceptions, in general, it is only in modern times that a definitive link between mania and melancholia has been established. In the past, the syndromes have been treated, described and accounted for separately. This is the case in both western cultures and other cultures in antiquity.

This brief historical overview highlights the fact that mania is an enduring and recognisable clinical entity, and a biological phenomenon that has been described in all cultures, surviving translations and surfacing in earliest recorded history (Dewhurst, 1992). The chapter begins with a brief outline of early non-western theories of mania, as found in Ancient Egyptian, Chinese, Ayurvedic, and Hebrew cultures. Contributions from the Hippocratic-Galenic group are then explored, as they were the first to propose the idea of a relationship between mania and melancholia. This is followed by examination of the role of Arabic medical compliers and the extension of western concepts into Islamic thought. Analysis then broadly covers the significant developments in psychiatric nosology from contributions made by Falret, Baillarger and Emil Kraepelin the early 19th Century and successive researchers - such as those from the school of Wernicke, Kleist and Leonhard, Klerman, Angst and Perris amongst others – who gradually built a framework that has converged on the current notion of a spectrum concept of bipolarity. In examining how the concept of mania has evolved over time, it is apparent that the development of psychiatric nosology in relation to bipolar disorder is an ongoing process and one that has yet to be fully resolved.

Etymology Accurately pinpointing the term’s linguistic origins is complicated as mania has been used to describe various states within medicine, mythology and philosophy. The etymology of the words ‘mania’ and ‘melancholia’ have roots in Ancient Greek. Melankholia (meaning ‘sadness’) is literally translated as melas, meaning ‘black’ and khole, meaning ‘bile’. The etymology of the word mania is less clear, but believed to be most likely derived from the word ‘ania’ (to produce great mental anguish) and ‘manos’ (relaxing of the mind or soul) (Skinner, 1961; Angst & Marneros, 2001). However, alternative sources trace the origin to a connection with the word menos, meaning “strength, life, vigor, passion or spirit”, suggesting an experience of intensified mental power (Burkert, 1985: 44). Others postulate that it is related to the term mainesthaii (‘to rage, go mad’) (Skinner, 1961). According to Socrates and Plato, madness is part of prophetic inspiration that inspired poets, prophets and philosophers1. Hummelvoll & Severinsson (2002: 417) note that the Indo-European root of the word mania is men, meaning “spiritual excitement”, and that when suffixed to Greek words, signfies “an abnormal disposition, exaggerated will or passionate need”.

Ancient Concepts:

Egyptian Conceptualisation of mental disorders can be traced to references in ancient papyri from the Pharaonic period (Stone, 1937). The Ebers papyrus (c. 1552 B.C) mentions psychotic states and other mental conditions such as depression, dementia, delirium and psychomotor retardation. However, while different symptoms of mental disorders were described, the underlying causes were conceived in a general way. Primarily, symptoms were described as problems of the heart and uterus, and the role of the physician, magician and priest were not separated, suggesting that theories about causation were based in mysticism. Treatment followed somatic principles that typically involved fumigation of the uterus and reproductive organs (Okasha, 2005).

Hebrew In Talmudic literature, the term ‘shoteh’ refers to what may now be described as a psychotic person. However, an important subtype exists: the ‘ittam halim, ittim shoteh’ meaning ‘periodically well, periodically psychotic’, or one who cycles in and out of episodes. Interestingly, it was the judges of the Beit Din (rabbinical court) and not clinical professionals, who are charged with the task of determining who is classified as a ‘shoteh’ in Hebrew culture (Strous, 2004).

1 In the ‘Phaedrus’, insanity is referred to as “…a third kind of possession and madness [that] comes from the Muses. This takes hold upon a gentle and pure soul, arouses it and inspires it to songs and other poetry… But he who without the divine madness comes to the doors of the Muses, confident that he will be a good poet by art, meets with no success, and the poetry of the sane man vanishes into nothingness before that of the inspired madman” (Marneros & Angst, 2000: 2).

Page | 8

Chinese In traditional Chinese culture, illness was thought to reflect an imbalance between positive (yang) and negative (ying) forces. This belief system stems from the idea of depletion and repletion in the main bodily organs and transportation channels. Thus, in pre-modern China, treatment was usually based on the severity of the imbalance, rather than the types of symptoms (Chan, 2001). Specific mood disorders were therefore not identified, or differentiated, as much as in western cultures.

Only two mental-emotional disease categories were specified, and these were taken to encompass the full spectrum of psychiatric disorders. The main yin-yang conditions of dian, meaning ‘withdrawal’ and kuang, meaning ‘mania’, were thought to exist separately, although it was recognised that a person could alternate between the two. Mania was typically categorised as a yang condition, of “excessive stirring and movement”2. The first use of the compound term (‘withdrawal and mania’) that hints at a relationship between the two states is contained within the Spiritual Axis, one of the earliest books written on Chinese Medicine, compiled around 305-204 B.C. Later, in the Yuan dynasty (1271 – 1368), mania was categorised as yang, mostly “… caused by phlegm binding within the heart and chest.” By the Ming dynasty (1368-1644), dian and kuang, along with epilepsy, were considered the three major manifestations of psychiatric disease. During the Qing dynasty (1644 – 1911), mania was understood to be a result of “great fright and great fear” and as a disease was thought to lie in the liver, gallbladder and stomach (Flaws, 2001).

Ayurvedic medicine From the Ayurvedic point of view, ill health is a result of an imbalance in the three doshas (humors): Vata (wind/breath), Pitta (bile), and Kapha (phlegm/mucus) (Keswani, 1974). Depression was thought to be created by a kapha imbalance that lodges in the nervous system, interfering with normal functioning of the mind and nervous system (Gerson, 1993). The philosophy of Ayurvedic treatment is based on the union of body, senses, mind and soul and, in seeking to re-establish balance and harmony in the body's systems, is not dissimilar to the fundamentals of traditional Chinese medicine and Ancient Greeks (Keswani, 1974).

Mention of mania is found in early Indian texts on Ayurvedic medicine, most notably in the Charaka Samhita a compilation believed to have arisen around 400-200 B.C. Regarded as one of the oldest and the most important ancient authoritative writings on Ayurveda, the chapter on insanity

2 As noted in the Classic of Difficulties: “Double yang leads to mania; double yin leads to withdrawal.” (Flaws, 2001)

Page | 9

describes mania as “…confusion of intellect, extreme fickleness of mind [and] incoherence of speech… ‘agitation of the eyes’ and ‘unsteadiness’ ” (Torrey & Miller, 2001: 7).

Greek In Ancient Greek mythology, the Maniai were Daimones (Spirits) of madness, insanity crazed frenzy and mad passion (Atsma, 2008). Dionysus, the God of wine and mania, was known to succumb to the madness of ‘Bacchic revelry’, a state of intoxicated ecstasy, where intoxication is interpreted as a “…change in consciousness through the irruption of something divine…” (Detienne, 2001: 148; Burkert, 1985). According to ancient beliefs, the “folly that is mania” was considered “much like a scourge, [an illness] marked by impurity” (Detienne, 2001: 157). However, it was the Ancient Greek physicians made efforts to formalise classifications of disease by developing a system that combined physiology and pathology.

Hippocrates and Humoral Pathology The Ancient Greek physician Hippocrates (c. 460 – 337 B.C), considered to be the ‘Father of Medicine’, was the first to classify mental diseases based on scientific principles and consider the brain as the organ of mental functions and site of disturbances3. According to Hippocrates, mental disorders were understood to be caused by the “…interaction of body liquids, especially bile, and the brain” (Angst & Marneros, 2001: 4). Black bile, thought to originate in the spleen, was believed to be an irritant that could “…flow out of its natural place within the body, become inflamed and corrupted and finally obscured the mind.” (Aliverti, 2004: 80). Thus, humoral pathology built on the theory that;

…mental disease is due to the deleterious effect produced on the brain and its pneuma by unbalanced combinations of the basic qualities of heat, cold, dryness and moisture; that this imbalance is due, in turn, to an imbalance in the quality-carrying bodily humors, the blood, phlegm, yellow bile and black bile… (Drabkin, 1955: 229).

This marked a significant revolution of thought with regard to the conceptualisation of disease. His humoral theory argued for a more biological approach to illness and thus his contributions were an important step towards disconnecting mental disorders from religiosity and the concept of divine

3 Hippocrates wrote: “The people ought to know that the brain is the sole origin of pleasures and joys, laughter and jests, sadness and worry, as well as dysphoria and crying. Through the brain we can think, see, hear and differentiate between feeling ashamed, good, bad, happy… Through the brain we become insane, enraged, we develop anxiety and fears, which can come in the night or during the day, we suffer from sleeplessness, we make mistakes and have unfounded worries, we lose the ability to recognise reality, we become apathetic and we cannot participate in social life… We suffer all those mentioned above through the brain when it is ill…” (Angst & Marneros, 2001: 4).

Page | 10

punishment (King, 1999). Hippocrates’ writings contain extensive discussion about the syndromes of mental derangement and locate the cause of disease solidly within the body. He comments that mania and melancholy were more prevalent during summer and autumn months (Karampelas et al., 2004). In general, Hippocrates advised a regime of hygiene, diet and relaxation in order to restore balance to the humors and thus mental equilibrium. The excessive use of bloodletting, bathing and purging that persisted as treatments well into the nineteenth century can be seen as direct outcomes of such disease systems (Skinner, 1961).

Arataeus of Cappadocia While madness was clearly a topic of debate in the classical era, it was the renowned Greek physician, Arataeus of Cappadocia, practicing later in the first century A.D, who is attributed with the earliest written descriptions of a relationship between mania and melancholia. His writings unite the concept of melancholia and mania as having a “common origin in black bile” (Angst & Marneros, 2001)4. His book, On the Aetiology and Symptomology of Chronic Diseases devotes an entire chapter to the subject of mania. According to Arataeus;

… melancholia is the beginning, and as such, a part of, mania… The development of mania is the result of the aggravation of melancholia, rather than constituting an evolution to a different disease… In most melancholic patients, sadness is converted into happiness; and patients develop what is known as mania (Del Porto, 2004: 3).

He also provides clinical descriptions of manic behaviour;

Some patients with mania are cheerful, they laugh, play, dance day and night, they stroll in the market, sometimes with a garland on the head, as if they had been winner in a game: these patients do not bring worries to their relatives. But others fly into a rage… The manifestations of mania are countless. Some manics, who are intelligent and well educated, are dealing with astronomy, although they never studies it, with philosophy, but autodidactically, they consider poetry as a gift of muses (Marneros & Angst, 2000:3).

Soranus The idea of a connection between the two phenomenological states of melancholia and mania was later taken up by Soranus of Ephesus in the 2nd century A.D. He wrote extensively on mania, considering it a “chronic disorder without fever” and an illness “involving a state of stricture” (Jackson, 1972: 280). In his clinical description of mania he describes it as manifesting;

4 Arataeus also comments on the seasonal nature of the disorder: “Summer and autumn are the periods of the year most favourable for the producing of this disorder, but it may occur in spring.” (Goodwin & Jamison, 1990: 58).

Page | 11

… now in anger, now in merriment, now in sadness or futility, and now… in an overpowering fear of things which are quite harmless… sometimes continuous and at other times relieved by intervals of remission (Jackson, 1972: 280).

In general, Soranus viewed mania and melancholia as distinct diseases with separate aetiologies, although he noted that many consider melancholia “a form of the disease of mania”. Soranus also noted predisposing factors of age and sex and commented that mania is more often found amongst young and middle-aged men. Interestingly, he also emphasised the struggle for recognition and success within a highly competitive society and “…intense straining of the sense and the mind in study or other ambitious pursuits...” as factors provoking mental distress (Drabkin, 1955: 229). This is perhaps the first written indicator of stress and excessive goal pursuit as a precipitating factor of manic behaviour.

For Soranus, treatment included a focus on the psychological. For calming the mind, he recommended listening to the discussions of philosophers. He qualifies this statement, however, by admitting that mania was primarily a bodily disorder, with the ‘affectation of the soul’ only a secondary manifestation and for this reason, “…no philosopher has ever set forth a successful treatment for this disease” (Jackson, 1972: 282).5

Galen The next contribution came from the so-called ‘Prince of Physicians’, Claudius Galenus of Pergamum (commonly known as Galen) (c. 130 – 200 A.D) who was the leading medical authority of the Christian world (Skinner, 1961: 183). Galen provided a detailed classificatory scheme on categories of insanity. His physiology revolved around the idea of pneuma which he believed vital to the stimulation of organisms. Galen made fragmentary references to mania, believing it to result from “…psychic functions being damaged due to a primary brain disorder caused by biting and hot humor (yellow bile)… [or] bad temperament increasing the heat of the brain” (Jackson, 1972: 279).

In general, Galen supported Hippocrates’ humoral theory in stating that the brain was affected by an excess of black bile but extended the concept to include personality types, developing categories of the sanguine, phlegmatic, choleric and melancholic temperament (Jackson, 1972: 277; Drabkin 1955). He proposed nine possible mixtures of temperaments that were linked to four primary qualities: hot, cold, wet and dry and proposed that a predominance of one or more of these qualities, mixed with a certain temperament, predisposed an individual to certain types of illnesses. The link between the body and mind is thus central to this system (Nutton, 2004). In terms of

5 Following Soranus was his student Caelius Aurelianus, who wrote a book On Acute Disease, in which he lists seven possible etymologies of mania (Marneros & Angst, 2000).

Page | 12

treatment advice, Galen recommended the use of purgatives, so, on the whole, his work does not provide much progression on the topic since Hippocrates (Drabkin, 1955).

Arabic Approaches The next stage in the development of psychiatric knowledge comes from the work of three Ancient Greek medical compilers Oribasius, Aetius, Alexander of Tralles, Paulus of Aegina and their influence on the Arabic physicians Al-Rhazi and Ibn-Sina. In what is known as the ‘Golden Age’ of Arabic medicine, the Hippocratic-Galenic tradition of medicine was preserved in translation and found prominence in Arabic culture (Dewhurst 1992: 81). Thus, the western framework of disease made an excursion into non-western thought and found continuation within Islamic belief systems.

Oribasius, writing in the 4th century A.D, did not provide any theoretical explanation or clinical description of mania, beyond stating that treatment was the same as for melancholia, and recommending “horse fennel and byrony”. In turn, Alexander of Tralles (c. 525 – 605 A.D) discussed cases of “strange impulses” and mania as “an exaggeration of the melancholic state to the point of extreme wildness”, mainly arising from bile or increase or decrease of blood flow to the brain (Jackson, 1972: 279)6. He also referred to the cyclical nature of the relationship between mania and depression, stating that;

[t]hose affected with such conditions are not suffering from melancholia only, for they tend to become maniacal periodically and in a cycle. Mania is nothing else but melancholia in a more intense form (Goodwin & Jamison, 1990: 58).

Later in the 7th century, Paulus of Aegina extended Hippocratic-Galenic nosology when he considered that a second type of black bile, caused by the overheating of yellow bile, brought about “the disease called mania” (Jackson, 1972: 275). He was thus the first of the medical compilers to consider mania a separate disease. In his work On Melancholy, Mania and Demonias he noted that;

[w]hen the complaint is occasioned by yellow bile, which, by too much heat, has been turned into black, it will bring on the disease called mania, which occasions ungovernable madness, so that those affected with it will destroy persons who near them unguardedly (Jackson, 1972: 280).

Paulus recommended cooling remedies, blood-letting and purgatives, as well as suggesting that patients “…must be secured in bed, so that they may not be able to injure themselves, or those who

6 Jackson (1972: 276) notes that Oribasius referred to some patients as: “…laughing without reason and seeming to have cheerful delusions, and he associated these with a plethora of blood; others were irritable, agitated and given to savage and furious attacks, and he attributed this to blood transformed to black bile.”

Page | 13

approach them; or swung within a wicker-basket in a small couch suspended from on high” (Jackson, 1972: 280).

Al-Rhazi & Ibn Sina There was widespread adherence to the principles of humoral pathology by Islamic physicians following translations into Arabic (Dols, 1987: 4). Most notable were Al-Rhazi (Rhazes) writing in the 10th century - known as the ‘Persian Galen’ - who detailed nine subtypes of melancholia, and Ibn Sina (Avicenna) writing in the 11th century, who discussed rabies as a type of mania. Both wrote extensively on the subject of insanity with their emphasis primarily on somatic principles as causes of illness, resulting from humoral imbalance (Dols, 1987).

Ibn Sina cited bestial madness as an explanation for mania in his monograph On Mania and Rabies;

The explanation of mania is bestial madness…Know that the causative agent of bestial madness is from the same essence as the causative agent in melancholia; in both of them the essence is black bile. The causative agent of bestial madness, however, is burnt black bile from the yellow or black bile…As for mania, it is entirely derangement, jumping about, joking, predacity, and an inhuman appearance; indeed, his appearance is that of a wild animal (Dols, 1992: 481).

He also ascribed the cause for mania and melancholia to the same product.7 Ibn Sina believed that mania could be naturally healed by the expellation of burnt bile through haemorrhoids or varicose veins. If clinical intervention was required, it was based on “moistening and cooling” treatments, however, in cases of extreme behaviour it was suggested that if “…there is fear that the deranged will inflict harm on themselves, they should be tied up securely and put into a cage and suspended in an elevated suspensory like a cradle” (Dols, 1992: 483).

The Middle Ages During the Medieval period, most authors writing on the subject of mental disorders adhered to principles based on a medical framework that was influenced by the humoral theories of Hippocrates and Galen. The locus for insanity was still considered as an imbalance in the substance of the brain, with the main nosological categories being phrenitis, melancholia and mania (Jackson, 1972).

7 Ibn Sina: “Undoubtedly the material which is the effective producer of mania is the same nature as that which produces melancholia” (Goodwin & Jamison, 1990: 58).

Page | 14

This period was also dominated by ideologies of the church and theology. At this time, there was a strong focus on mental illness as a sin or form of divine retribution, or as evidence of demonic possession. To medieval clerics, mania or depression could either be seen as “godlike, or as being possessed” (Kaufman, 2003: 81). Generally, those affected with mental afflictions were considered to be ascetics or prophets (Jackson, 1972). Thus, there appeared to be widespread belief in the relationship between mental illness and divinity at the time.

The era has scant references to mania as a disease separate from melancholia. In the 10th century, Ewald Hering, a German psychologist observed that “…with full moon, increasing mania” (Iosif & Ballon 2005: 1499). In the 12th century, Arnold of Villanova wrote of the use of trepining – a surgical procedure involving removal of bone from the skull - to treat mania8 (Alexander & Selesnick, 1967; King, 1999; Gross 1999).

During this time, the Spanish philosopher Maimonides composed a series of monographs discussing the influence of emotions on general health. In his Guide to the Perplexed he mentions the role of excess bile in creating a state of “black confusion” (Rosner, 1989).

In 1230 A.D, Gilbertus Anglicus described conditions of mania, melancholia, lethargy, epilepsy and demonic possession in his Compendium Medicine (Blashfield, 1998). His work was later cited in an anonymous treatise entitled Discursus in melancholia cuiusdam illustrissmi principis (c. 1575) where it was stated that “…mania is an infection of the anterior cell of the head with a lessening of the imagination…” as opposed to melancholy, which was thought to be an infection of the “…middle cell with lessening of reason…” (Midelfort, 1994: 83). Indeed, impairment of the ventricles was a popular theory during the Middle Ages – even Geoffrey Chaucer in his famous work, The Knight’s Tale, refers to “…mania being generated in the front ventricle…” (Kemp, 1993). 9

Thus, during this period, there was no specific advance in conceptualisation of mental disorders, however, the locus was generally considered to be linked to the functioning and mechanisms of the brain.

16th & 17th Centuries In the 16th century, Jason Pratensis, writing in the Netherlands, wrote the first book exclusively dedicated to nervous diseases - De Cerebri Morbis (c.a. 1549) – in which he stated;

8 “The skin is incised in the fashion of the cross and the cranium perforated so that the morbific material will pass to the exterior” (Alexander & Selesnick, 1967: 66). 9 Dr John Gaddesden, a contemporary of Chaucer (c.a. 1300) records: “Mania and melancholia are different forms of the same thing” (Goodwin & Jamison, 1990: 58).

Page | 15

Most physicians associate mania and melancholia (truly dreadful diseases) as one disorder, because they consider that they both have the same origin and cause, and differ only in degree and manifestation. Others consider them to be quite distinct (Goodwin & Jamison, 1990: 58).

During the 17th century, belief in the influence of astrology and the power of witchcraft became dominant. The influence of the planets upon human organs, along with the role of vital fluids in combination with the four elements of air, water, fire and earth, was believed to correspond significantly to the four seasons and the four ages of man.10

Another prominent belief during this period marked a return to humoral principles with the idea that mania was caused by burnt black bile, a phenomenon known as melancholy adust (Mildelfort, 1994).

However, the famous physician Paracelsus (c. 1492 – 1541) attacked such superstition, marking a partial break from the tradition of humoral pathology with his investigations of “chemical therapeutics” and the interactions of anatomy, physiology and chemistry on disease (Skinner, 1961: 311). In reference to mania Paracelsus stated that it “… has the following symptoms: frantic behaviour, unreasonableness, constant restlessness and mischievousness. Some patients suffer from it depending on the phases of the moon” (Iosif & Ballon, 2005: 1499).

Later, in 1602, Felix Platter began to employ more clinically based observations devoid of religiosity to systematically classify mental disorders (Goodwin & Jamison, 1990). He used the terminology stultitia, moria, fatuitas to discuss various symptoms of foolishness, or “alienation of the mind”. His description of fantastics, those who “…excel in cleverness (ingenium) but whose love of being praised gives them ass’ ears and leads them to buffoonery and ridiculous behaviour, people who are foolish when seized by strong emotions…” (Goodey, 2004: 298; Alexander & Selesnick, 1967) is akin to an account of manic behaviour. Yet, as Goodwin & Jamison (1990: 59) note, while Platter’s descriptions of mania and melancholia are “…extensive and methodical, there was little to suggest the longitudinal or recurrent nature of the illness…” 11

Belief in the role of vapours in the impairment of the brain also became prominent during this period. Du Laurens (c. 1558-1609) identified two sorts of melancholia – “dotage with, or without,

10 “In the philosophy of the time, the macrocosm, or universe, was inextricably linked with the microcosm, man…The conjunction and the opposition of the planets at the time of man’s birth influences the proportions of the humors…The planet Saturn, for instance, was looked upon as malign and as tending to cause an excess of black bile, thus producing melancholy” (Overholser, 1959: 336). 11 Earlier, in 1600 Platter observed: “Perturbation of the spirit of the brain when mixed with and kindled by other matter can produce melancholia, or if more ardent, mania” (Goodwin & Jamison, 1990: 58).

Page | 16

fever” - and conjectured that if “…rage and fury accompany the condition, the disease is called mania…” (Williams, 2003: 6). He signaled the relationship with hot vapours and the turn to mania in melancholic individuals;

The melancholike are most wittie and ingenuious…and when this humour growth hot, by the vapours of the blood, it causeth as it were, a kinde of divine ravishment, commenly called Enthousiasma, which stirreth men up to plaie the Philosophers, Poets and also prophesie (Sena, 1973: 297).12

Following this, Thomas Willis, regarded as a founder of neuropathology, attempted to shift explanatory themes of mental illness from humors to chemistry in performing dissections of his patients’ brain abnormalities. At a time when the dominant view was based on the role of bile in affecting brain function, Willis radically proposed that higher cognitive functions arose from “convolutions of the cerebral cortex”. Thus, while many of his contemporaries attempted to locate the cause of mania in organs such as the lung, uterus and spleen, Willis identified the organic function of the brain and recommended the procedure of trephining as a “curatory for madmen” (Molnar, 2004; Dewhurst, 1992; Gross, 1999). In 1672, Thomas Willis specifically commented on the relationship between the two varying mood states;

[Manics and melancholics] are so much akin, that these Distempers often change, and pass from one into the other; for the Melancholik disposition growing worse, brings on Fury; and Fury or Madness [mania] growing less hot, oftentimes ends in a Melancholik disposition. These two, like smoke and flame, mutually receive and give place to one another (Goodwin & Jamison, 1990: 58).

Later, in his work Operomnia (c. 1681) he described the concept of ‘mania-melancholia alternation’, which he identified as the “…transition from one affection to the other as a consequence of a profound natural affinity” (Hurley, 1996: 551).

In general however, from the Renaissance through to the 18th century, there was little change in viewing humoral theories as explanations for insanity, and no concrete development on classifying a relationship between mania and melancholy.

12 Also during this period, a plethora of texts on the phenomenon of ‘ethusiasme’ surfaced, providing hints to the relationship between frenetic excitement and the flight of ideas typical of a manic episode. Meric Casaubon (1655), in a Treatise Concerning Enthusiasme, identified melancholy as the cause of enthusiasm, yet did not further explore the nature of the connection (Sena, 1973).

Page | 17

18th Century Developments Although there was a swing towards scientific inquiry during the Enlightenment, there was little significant progress in the understanding of the relationship between melancholia and mania. In general, there was growing concern about the perceived rise of insanity, generating fears it was becoming an epidemic, and much conjecture about the increase being associated with urbanization (Torrey & Miller, 2001). On the specific subject of mania as a clinical entity however, there were few observations that significantly contributed to the development of the concept. 13

Herman Boerhaave writes in 1735;

If Melancholy increases so far, that from the great Motion of the Liquid of the Brain, the Patient be thrown into a wild Fury, it is call’d Madness [mania]. Which differs only in Degree from the sorrowful kind of Melancholy, is its Offspring, produced from the same Causes, and cured almost by the same Remedies (Goodwin & Jamison, 1990: 58).

Later in 1744, Robert James states;

There is an absolute Necessity for reducing Melancholy and Madness to one Species of Disorder, and consequently of considering them in one joint View… We find that melancholic Patients, especially if their Disorder is inveterate, easily fall into Madness, which, when removed, the Melancholy again discovers itself, though the Madness afterwards returns at certain Periods (Goodwin & Jamison, 1990: 58).

Richard Mead (c. 1673 – 1754) suspected that mania and melancholia were different aspects of the same process. In 1751 he stated;

Medical writers distinguish two kinds of Madness, and describe them both as a constant disorder of the mind without any considerable fever, but with this difference, that the one is attended with audaciousness and fury, the other with sadness and fear: and that they call mania and this melancholy. But these generally differ in degree only. For melancholy very frequently changes, sooner or later, into maniacal madness; and, when the fury is abated, the sadness generally returns heavier than before (Goodwin & Jamison, 1990: 58).

For Vincenzo Chiarugi (c. 1759 – 1820), writing in Italy, mania was part of a taxonomy that included melancholia and amentia (imbecility). He stated that mania “…signifies raving madness. The maniac

13 During this period, Boisser de Sauvages classified melancholia into six different forms: 1) melancholia moria 2) melancholia saltans 3) melancholia errabunda 4) melancholia silvestris 5) melancholia furens and 6) melancholia enthusiastica (Marneros, 2001: 230).

Page | 18

is like a tiger or a lion, and in this respect mania may be considered as a state opposite to true melancholia” (Angst & Marneros, 2001:7).

Also during this time, Roger of Parma (1770) wrote about trepining specifically as a cure for mania;

For mania or melancholia, a cruciate incision is made in the top of the head and the cranium is penetrated, to permit the noxious material to exhale to the outside. The patient is held in chains and the wound is treated… (Gross, 1999: 430).

In 1792, the London physician William Parageter, published his Observations on Maniacal Disorders in which he expressed alarm over the increasing prevalence of mania, that “…hideous malady which so amazingly prevails at this day [and the] frequency of this disease renders it truly alarming… [It] has arrived at the height of its dominion” (Torrey & Miller, 2001: 39).

The physician John Haslam who worked in London’s Bethlam Hospital also provided clear descriptions in both his published works Observations on Insanity (1798) and Illustrations of Madness: Exhibiting a Singular Case of Insanity (1820) of both schizophrenia and manic-depressive illness, which included examples of rapid cycling (Torrey & Miller, 2001: 40). In considering the division of mania and melancholy, Haslam categorically stated that he would “…strongly oppose their being considered as separate diseases” (Leigh, 1955: 27).14

Advances in the 19th Century Elaborations of manic-depressive illness in the 19th century focused mainly on the work of the French psychiatrists, Pinel, Heinroth and Esquirol. Despite differing approaches to the topic, however, all three adhered to the traditional concept that mania and melancholia were separate syndromes (Angst & Marneros, 2001:7). In 1806, Pinel published his Treatise on Insanity in which he proposed a diagnostic classification system for the major mental illnesses: melancholia, dementia, mania without delirium and idiotism (Tan & Yeow, 2004). He also described the unpredictable mood swings and flight of ideas of manic patients. In describing the affective component of mania he stated that the condition is “…distinguished by an exalted sentiment of self-importance, associated with chimerical pretensions to unbounded power of inexhaustible riches” (Dewhurst, 1992: 82; Alexander & Selesnick, 1967: 112). He also noted that there are many instances where melancholics are;

th th 14 During the mid-18 and mid-19 centuries, the theory of physiognomy also gained prominence. From the 1790’s onwards, medical practitioners focused on countenance as indicators of madness. According to this theory, facial features were linked with indicators of character, morality and intellect. In general, “wildness and unsettledness” of appearance provided a hint to the character of the maniac (Houston, 2003: 54).

Page | 19

…remarkable for their ardent enthusiasm, sublime conceptions and other great magnanimous qualities…charm[ing] society by the ardour of their affections, and give energy to its movements by their own impassionaed turbulence and restlessness (Radden, 2003:39).

Pinel also remarked upon the genetic component of mania, stating that;

…it would be difficult not to concede a hereditary transmission of mania, when one recalls that everywhere some members of certain families are struck in several successive generations (Sher 2002: 1527-1528).15

In 1818, Heinroth classified the different categories within the ‘mixtures of exaltations and depression’ in his textbook Disorders of Mental Life or Mental Disorders. He separated mental disorders into three categories: 1) exaltations (hyperthymias), 2) depressions (asthenias), and 3) mixed states of exaltations and weakness (hypoasthenias). This last category of hypoasthenias was further divided into subtypes: i) mixed mood disorders (animi morbid complicati) ii) mixed mental disorders (morbid mentis mixti) and iii) mixed volition disorder (morbi voluntas mixti). He further classified the pure forms of exaltation into three sub-groups: a) melancholia erotica b) melancholia metamorphosis and c) melancholia saltans (Marneros, 2001: 230). 16

In 1838, Esquirol also speculated on the role of genetics in mania, stating that;

[i]t would be difficult not to concede a hereditary transmission of mania, when one recalls that everywhere some members of certain families are struck in several successive generations (Kaufman, 2003:81; Angst & Marneros, 2001).

Also in Austria in 1838, Dr Irshitzky theorized that the alternations of melancholia and mania were the distinguishing features between valley and hill dwellers;

We know from experience, that among the valley folk now and then melancholia occurs, mostly for religious reasons, and frequently acute insanity (mania). These mental illnesses follow in a quite natural manner from the constitution and character of these people…whereby frequently mania serves as an interlude (Shorter, 2006: 6).

15 Pinel also wrote on the seasonal effect on manic states: “It is curious to trace the effects of solar influence upon the return and progress of maniacal paroxysms. They generally begin immediately after the summer solstice, are continued with more or less violence during the heat of the summer, and commonly terminate towards the decline of the autumn” (Quen, 1968: 81). 16 Also writing in France at this time was Guslain, who labeled different categories of mixed states as 1) ‘the grumpy depression’ 2) ‘the grumpy exaltation’ and 3) ‘depression with exaltation and foolishness’ (Marneros, 2001: 230-231).

Page | 20

It is interesting to speculate whether this observation hints at the contribution the social, possibly urban, environment has on triggering illness episodes.

Also during this period, Sutherland (c. 1810 – 1867) began investigating the link between excess phosphorous excretion and the presence of acute mania. This research was later taken up by Adam Addison (1865) and Mendel (1872) who both concurred that phosphate was excreted in “subnormal amounts” in patients with acute mania (Sourkes, 1998). These investigations mark the progressive shift towards understanding mental illness as an organic disturbance of the brain (Aliverti, 2004).

Elsewhere, in Germany in 1844, the director of the Sachsenberg mental hospital, Carl Friedrich Flemming described Dysthymia mutabilis as a mood disorder that alternates between Dysthymia atra (black depression) and Dysthymia candida (low-level mania), as such, observing both parts as the same disease;

Between both of them (atra and candida) there is not infrequent connection, ‘Dysthymia mutablis’, which sometimes shows the character of one, sometime the character of the other (Shorter, 2006: 7).

Yet, despite this renewed focus, it is clear that unification of depression and mania into a singular clinical entity had not yet developed. Indeed, nosologic stagnation was the status quo for many decades until the work of two French researchers working in the 1850’s reawakened interest in the concept of bipolarity.

‘La Folie’ The most significant development emerged in middle of the 19th century with the work of Falret and Baillarger in France, who pursued the idea that mania and melancholia were “fluctuating poles of the same disease” (Melechi, 2003: 50).

In 1851, Jean-Pierre Falret, a pupil of Esquirol, described for the first time a separate clinical entity he dubbed la folie circulaire, meaning ‘circular insanity’, a mental disorder characterized by “…a continuous cycle of depression, mania and free intervals of varying lengths” (Angst & Marneros 2001:7). Falret published his conceptualization of a condition of alternating forms of mania and depression on February 14th 1854. It detailed the “…sequential change from mania to melancholia and vice versa and the interval in between as an independent disease of its own” (Angst &

Page | 21

Marneros, 2001:7). Significantly for Falret, the interval of remission was an integral part of the syndrome that formed la folie circulaire. 17

A few months earlier, on January 31st, 1854, Jules Baillarger described a “…biphasic mental illness causing recurrent oscillations between mania and depression…” which he designated la folie a double forme, meaning ‘dual-form insanity’ (Angst & Marneros, 2001: 7). Although Baillarger conceptualised a disease in which mania and melancholia changed into one another, he disputed Falret’s suggestion that the interval between episodes was part of the syndrome.18

During this time, other researchers were investigating the same concept - Billod, for example, with his concept of la folie a double phase (dual-phase insanity) and Legrand du Saulle la folie alterne, (alternating insanity) (Del Porto, 2004). In 1845, the German psychiatrist Wilhelm Griesinger also described the change from melancholia to mania in his work Pathology and Treatment of Mental Illnesses, believing the disease to be “a circle of both types with regular changes” (Angst & Marneros, 2001:6). He also made reference to rapid cycling and mixed states, which he described as “…mid-forms, in which a change from depression to the manic exaltation occurs” (Marneros, 2001: 231). In 1878, Ludwig Kirn published a thesis in Germany on the “periodic psychosis”, which focused in detail on the psychopathological aspects of the illness condition (Shorter, 2006: 7).

Cyclothymia The term cyclothymia was initially introduced by Karl Kahlbaum to describe the mildest form of manic depression (Angst & Marneros, 2001; Shorter, 2006). Some researchers argue that the mania described by Kahlbaum “…was not a full-blast onslaught affecting all mental functions but a kind of exaggerated elation without psychosis” (Shorter, 2006: 8), thus more likely related to hypomania.19 The term cyclothymia was later taken up by Kahlbaum’s student Hecker (1877) to describe “periodic changes of depression and exaltation” and, following this, by Jelliffe (1911), to signify the “…the mild forms of manic-depressive psychoses and the manic-depressive constitution” (Van Valkenburg et al., 2005: 1).

17 Jean Pierre Falret, 1854: “There is a certain category of patient who continually exhibits a nearly regular succession of mania and melancholia. This seemed sufficiently important to us to serve as a basis for a specific mental disorder, which we call circular insanity because these patients repeatedly undergo the same circle of sickness, incessantly and unavoidably, interrupted only by rather brief respites of reason.” (Goodwin & Jamison, 1990: 56). 18 Jules Baillarger, 1854: “There exists a special type of insanity characterized by two regular periods, the one of depression and the other of excitement…This type of insanity presents itself in the form of isolated attacks; or, it recurs in an intermittent manner; or, the attacks might follow one another without interruption.” (Goodwin & Jamison, 1990: 59). 19 Shorter (2006) suggests Kahlbaum’s concept of cyclothymia corresponds to Emanuel Ernst Mendel’s (1881) notion of hypomania.

Page | 22

Mixed states The nosology of bipolar disorder is further complicated by the patterns of mixed states and rapid cycling20 and are worth a brief mention here. Pohl, working in Prague in 1852, discussed mixed states that occurred in the transition from melancholia to mania, which he termed poriomanic melancholia (Marneros, 2001). The category of ‘mixed states’ was far from a conclusive clinical entity however. Opinion varied from Focke (1862), who described ‘regular alternation of cyclicity’; Kelp (1862) ‘lasting up to six days’; and Falret (1879) who considered the state ‘lasting 3-4 weeks’ (Marneros, 2001: 231).21

At the close of the 19th century however, despite the contributions of Falret, Baillarger, Kahlbaum and others, most clinicians continued to view mania and melancholia as “…distinct and chronic entities with a deteriorating course” (Del Porto 2004: 4).22 What characterised this period is that the idea of a link between mania and melancholia was generally considered, but there were many different conceptions of the clinical entity and ideas of treatment and diagnosis.23 It was not until the work of Emil Krapelin that the concept crystallised into a clear diagnostic entity of manic- depressive illness.

Kraeplin’s unified concept Emil Kraepelin, considered to be the ‘Father of Modern Psychiatry’, is credited with unifying affective disorders into a unitary concept of ‘manic-depressive insanity’. Kraepelin made a fundamental contribution to the field of psychiatry by dichotomizing endogenous psychoses into two groups - dementia praecox and manic-depressive insanity (Angst & Marneros 2001: 11). He also distinguished between three types of mania: i) depressive-anxious mania ii) excited depression and iii) stuporous mania (Marneros, 2001: 229).

In 1899, he wrote The Clinical Position of Melancholia, in which he stated that “…if periodic mania is identical with circular insanity we cannot deny the possibility that also periodic melancholia… must in fact be understood as a kind of circular insanity in which all the episodes take on a depressive hue… (Angst & Marneros, 2001: 7). Despite these distinctions, however, Kraepelin believed that the boundaries between the two groups were flexible. He understood that not all cases of endogenous

20 See Appendix A for definition 21 In 1881, Erich Mendel revived Hippocrates term ‘hypomaenomenoi’ in his book ‘Die Manie’ to conceputalise hypomania, “…that form of mania that typically shows itself only in the mild stages abortively, so to speak.” (Angst & Marneros, 2001:10; Marneros & Angst, 2000). 22 For example, in Scandinavia, depressio mentis periodica remained a separate affective disorder in the work of Lang (1896), Christiansen (1919) and Pedersen et al (1948) (Angst & Marneros, 2001:9). 23 Antoine Ritti (1892) comments: “By circular insanity, or folie a double forme, we understand a special form of mental derangement, the attacks of which are characterized by a regular sequence of two periods – one of depression, and another of excitement, or inversely” (Goodwin & Jamison, 1990: 59).

Page | 23

mental symptoms could be allocated to either category, a position he later clarified in The Phenomenological Forms of Insanity (1920);

[we] have to live with the fact that the criteria applied by us are not sufficient to differentiate reliably in all cases between schizophrenia and manic-depressive insanity. And there are also many overlaps in this area (Angst & Marneros, 2001: 11).

This pivotal concept of relating mania with melancholia changed the basis of psychiatric nosology (Del Porto, 2004: 3). Modern classifications are still generally based on Kraepelin’s classificatory system, emphasizing a method of pattern recognition, clinical profile and longitudinal course, outcome and prognosis, rather than a purely symptomatic approach (Del Porto, 2004: 4). Thus, as Berrios (2004: 105) notes, “…by the end of the 19th century, the clinical category of mania had changed its referent completely. It now named a different symptom cluster and was categorized within a new nosological framework.”

Significantly, as noted by Shorter (2006: 8), Kraepelin’s classification;

…based on course and outcome, became the first real conceptualization of manic-depressive illness, a disease having an undulating course rather than an irreversible downhill slide as in chronic psychosis (dementia praecox). Kraepelin therefore is the first investigator to have conceptualised mania and melancholia in the context of a nosological organizing principle, namely clinical course.

Kraepelin’s student Wilhelm Weygandt also made a key contribution by recognising the existence of mixed states. Weygandt was the first to employ the term ‘agitated depression’ in his 1899 work On the Mixed States of Manic-Depressive Insanity (Marneros, 2001; Del Porto, 2004)24.

Despite these advances however, there existed much opposition to the idea of a unified concept within international psychiatry. The development of the concept of manic-depressive insanity moved in different directions throughout Europe and the United States with the result that the distinction between unipolar and bipolar disorders were not widely conceded at this time (Angst & Marneros, 2001).

24 In essence, Weygandt proposed six types of mixed states: i) depressive or anxious mania; ii) excited or agitated depression; iii) mania with thought poverty; iv) manic stupor; v) depression with flight of ideas; and vi) inhibited mania (Angst & Marneros, 2001: 12).

Page | 24

20th Century Developments In the early part of this century, the school of Wernicke, Kleist and Leonhard had a profound influence in Europe, Portugal, Spain and Latin America that led to the work of Anibal Silveira (Brazil), Honorio Delgado (Peru) and Diego Outes (Argentina) (Del Porto, 2004). Most remained faithful to a disease model of the illness.

Wernicke (1900/1906) differentiated between different types of melancholia: 1) affective melancholia 2) depressive melancholia 3) melancholia agitate 4) melancholia attonita and; 5) melancholia hypochondria. On the subject of manic-depressive illness, he opined that;

[s]ingle episodes of mania or melancholia respectively, recurrent depression or recurrent mania without changing into one another, are something different from manic-depressive insanity (Angst & Marneros, 2001:9).

Wernicke’s colleague, Karl Kleist sought to examine other possible mood states that existed between the two great disease entities established by Kraepelin, in effect, “…to find room in the middle for diagnoses with prognoses that were perhaps more benign than Kraepelin’s terrible dementia praecox” (Shorter, 2006: 9). Despite Kleist’s ambitions, little progress was made and it was left to his students, Edda Neele and Karl Leonhard to complete his concepts and restore thinking about bipolarity within psychiatry. Leonhards’s work differentiated between ‘pure phasic psychoses’ (which included mania, melancholia, depression and euphoria) and ‘polymorphous phasic disorders’ (manic-depressive illness and cycloid psychoses), while Neele introduced the terms einpolig (unipolar) and zweipolig (bipolar) in 1949 (Shorter, 2006: 9). 25

Also during the early 20th century, Eugen Bleuler first suggested, in 1924, the idea of a continuum between schizophrenia and manic-depressive psychoses, and that oscillation between these two polarities was possible, thus suggesting a “dimensional rather than categorical” view of the illness condition (Del Porto, 2004: 5). He also introduced the term “affective illness” in describing these conditions (Goodwin & Jamison, 1990: 61).

The next major step in the conceptualization of manic-depressive insanity was made in 1957 by Karl Leonhard, whose clinical observations led him to coin the term ‘bipolar’ in describing patients with a history of mania. In his work The Classification of the Endogenous Psychoses he stated;

25 Also during this time, some researchers hypothesised about the evolutionary origin of the genes responsible for bipolar disorder. The theory builds on the work of the German psychiatrist, Ernst Kretschmer (1921) who suggested that mood disorders evolved from adaptations to the certain climatic conditions. It is argued that there is a similarity between the behaviour associated with withdrawal and energy homeostasis of depression and the increased activities typical of hypomania that are akin to the hibernation cycle, that would ensure survival in environments of long, severe winters and short summers (Sherman, 2001).

Page | 25

Undoubtedly there is a manic-depressive illness, having in its very nature the tendency to mania and melancholia alike. But next to this there are also periodically appearing euphoric and depressive states that show no disposition at all to change to the opposite form. Thus, there exists this basic and very important distinction between bipolar and monopolar psychoses (Shorter, 2006: 10).

These contributions thus challenged Kraepelin’s fundamental dichotomy (Angst & Marneros 2001; Del Porto, 2004). It must also be emphasized that Kraepelin categorized all mood disorders as part of ‘manic-depressive illness’ and did not distinguish between mania or melancholia or any alternations between the two. Therefore, as Shorter (2006: 8) points out, the widespread belief that bipolar disorder is the “successor” of Kraepelin’s manic-depressive insanity “is erroneous”. For Kraepelin, it was not a separate disease.

However, it should be recognised that, in recent times, there has been a “pendulum swing” back to embrace earlier concepts of polarity and contest the ‘bipolar versus unipolar dichotomy’. For example, according to Taylor & Fink (2006) in their review of the diagnosis of melancholia;

[t]he scientific evidence fails to distinguish unipolar and bipolar depressive disorders…Bipolarity as a separate psychiatric disorder is not supported by psychopathology, family studies, laboratory tests, or treatment response (Shorter, 2006: 12).

Discovery of Lithium Carbonate A significant advance was made in 1948 by Dr John Cade, an Australian psychiatrist, who discovered that lithium carbonate was an effective treatment in patients with manic-depressive psychosis (Cade 1949). The discovery of the anti-manic properties of lithium salts marked an important step in the understanding and treatment of mania with drug therapy (Lopez-Munoz et al., 2006).

Psychological Perspectives Also during the 20th century, there was an increase in the psychoanalytic perspective of bipolar disorder, focusing on envy, interpersonal conflict, denial, guilt, attachment issues and extreme sensitivity to feelings of loss in the development of mania (Etzersdorfer et al., 2006).

However, it was the influence of Adolf Meyer in the United States (1950’s) who is credited with wide acceptance of psychoanalytic thought with regard to the classification and treatment of mental disorders. The Meyerian approach was not incompatible with Kraeplin’s classification system, it simply promoted a different conceptual framework that took into account the interaction between

Page | 26

biology, psychological features and the social environment26. The discipline made an important contribution in highlighting conflicts and vulnerabilities that can trigger episodes. The perspective was later included in the first official diagnostic manual published in 1952, in which manic- depressive illness is classified as a ‘type of reaction’ – namely individual vulnerability in response to psychosocial problems (Del Porto 2004; Goodwin & Jamison, 1990). While psychoanalytic theory has a role in maintaining wellbeing in bipolar disorder, it is beyond the scope of this thesis to detail the many milestones and developments within this field.

Rapid Cycling Not until researchers began to explore sub-populations of people with bipolar disorder did they identify some who experienced a high frequency of mood changes within an episode. Dunner & Fieve (1974) significantly contributed to the discourse with the introduction of the concept of ‘rapid cycling’, defined as: at least four major depressive, hypomanic or mixed episodes within a twelve- month period (See Appendix A). However, the concept of rapid cycling has to be understood in context, given that ‘normal cycling’ has not yet been conclusively defined. It thus remains questionable whether the profile of ‘rapid cycling’ can be classified as a distinct sub-type of the bipolar spectrum (Mackin & Young, 2004).

Concept of the Bipolar Spectrum It was not until the 1980’s that ‘bipolar disorder’ replaced ‘manic depression’ as the official diagnostic term in the DSM-III of the American Psychiatric Association (Baldessarini, 2000; American Psychiatric Association, 1980; Shorter, 2006). Recently, emphasis has shifted to the concept of the bipolar spectrum. Contributions from Jules Angst and his associate Carol Perris in 1966 significantly enriched Bleuler’s previous ideas of a dimensional concept of manic depression (Angst & Marneros, 2001). Their findings are considered to mark a ‘re-birth’ of the concept of bipolarity in distinguishing between unipolar and bipolar conditions (Marneros, 2001a: 39).27 This definitive distinction was officially introduced in the DSM-III in 1980.

26 This viewpoint had earlier been explored by others such as Freud who postulated that mania was related to intense feelings of object loss and unresolved negative feelings (Aliverti, 2004); Lewin (1959) who regarded mania as a “mechanism of regression” (Levitan, 1968); others saw it as a “defence against unbearable guilt in a depressive state” (Etzersdorfer et al., 2006: 285); while Meltzer (1963) explored the role of envy in the genesis of manic-depressive states, relating the oscillating moods to “identification with a damaged breast and an idealized penis” (Etzersdorfer et al., 2006: 288). 27 In 1979, Karl Leonhard acknowledged the work of Angst and Perris in extending his earlier work on the topic: “It was the work of Angst and Perris that helped spread my theory that unipolar and bipolar diseases…have different clinical pictures. The bipolar form displays a considerably more colourful appearance; it varies not

Page | 27

Renewed interest in the theory of a bipolar ‘continuum’ was later taken up by Dunner et al. (1976), Angst (1978), Klerman (1981), Akiskal (1983, 1996) and Akiskal & Pinto (1999), whose combined work greatly contributed to the expansion of the spectrum (Angst & Marneros, 2001)28.

Controversy surrounds the diagnostic boundaries of bipolar disorder (Johnson & Miklowitz, 2006), however, according to the latest version (2000) of the American Psychiatric Association’s ‘Diagnostic and Statistical Manual of Mental Disorders (DSM-IV)’ the essential diagnostic feature of Bipolar-I is a ‘clinical course that is characterized by the occurrence of one or more manic or mixed episodes’. Usually, individuals have also experienced a major depressive (possibly psychotic) episode. The severity and duration of episodes are often severe and may result in hospitalisation.

In contrast, Bipolar-II is considered if the person experiences episodes of both hypomania and depression, but no manic episodes. The severity of the highs does not lead to hospitalisation and there are no psychotic features. In both forms, the type of depression experienced is melancholic, featuring psychomotor retardation, psychomotor agitation, anhedonia or psychosis (American Psychiatric Association, 2000; Black Dog Institute, 2009).

Summary It is clear that the alternation of melancholia and mania has been consistently described across the ages. Yet the psychiatric nosology for bipolar disorder is still a polemical topic. In the space of a few thousand years, mania has developed from being attributed to the influence of contaminating black bile and disequilibrium of elemental principles, to problems of the spleen and the uterus, to the consequence of evolution, to the role of religion and evil spirits, to the product of moral decay, through to the influence of genetics and the laws of neuroscience (Aliverti, 2004: 84). Today, in general, there is increasing acceptance of the concept of the bipolar spectrum and renewed interest in the field of mixed states and the boundaries of schizoaffective disorder. Clearly, however, the complexities of bipolar disorder and the diverse history of psychiatric classifications still lead to difficulties in obtaining a cogent explanation of origin, course and outcome that are widely adhered to across cultures and different biopsychosocial disciplines. However, the increasing prevalence of bipolar disorder diagnoses (particularly the Bipolar-II subtype29) implies the need for ongoing

only between the two poles, but in each phase offers different clinical pictures. The unipolar forms…return, in a periodic course, with the same symptomatology.” (Goodwin & Jamison, 1990: 56).

28 See Appendix B for detail. 29 Parker & Fletcher (2008) examined the lifetime community prevalence of BPD-II and found higher rates have been reported. This increase could be a reflection of diagnostic boundaries, shortening of duration criteria of hypomania, coupled with increased awareness and detection, or reflect impact of illicit drug use,

Page | 28

research for this enduring and complex mood disorder (Healey, 2009; Parker & Fletcher, 2008). The following chapter examines the literature that is concerned with the subjective aspects of bipolar disorder.

antidepressants or dietary changes. Results of Angst’s (1998) analysis of 4000 subjects in the ‘Zurich Cohort Study’ also suggest a higher prevalence of BPD-II.

Page | 29

Literature Overview

This chapter presents an overview of the subjective, psychosocial and coping literature related to bipolar disorder. Since the aim of this thesis is to deepen understanding as to how individuals cope with the disruption that bipolar disorder has on lives and identity development, a review of models of adjustment across different phases of chronic illness is also provided.

The first section provides a brief summary of the psychosocial disability and disease burden of bipolar disorder. The next section reviews bipolar disorder in an Australian context, detailing issues such as barriers to care and unmet need. The third section summarises the research focus to date and is followed by an examination of the impact of relapse and ongoing psychosocial impairment on the concept of recovery. The next section is an overview of the subjective perspective of bipolar disorder and discusses its importance in psychiatric research literature. The sixth section draws the focus back to look at some fundamental concepts related to the impact of diagnosis on identity. The final section shifts discussion to the role of health beliefs and models of adjustment in adapting to chronic illness.

Psychosocial Disability & Disease Burden Bipolar disorder is a chronic affective mood disorder that figures in the top ten causes of disability in the world. It is a significant contributor for disease burden and one that is highly correlated to substance abuse, anxiety, personality and eating disorders, and interpersonal and financial problems (WHO, 2001: 17; Grant et al., 2004). According to the WHO Global Burden of Disease 2001 – part of a five-year study conducted by the Harvard School of Public Health on behalf of the World Bank and the World Health Organisation - bipolar disorder accounts for 0.63 % of total disease burden of the major psychiatric disorders in the world, and for 3 % of total years lived with disability (YLD). At a global level, bipolar disorder is sixth in the top ten of leading cause of disability, ranking it more severe than schizophrenia and congenital abnormalities (Murray & Lopez, 1996; Hyman et al., 2006: 606; Cole et al., 2000). Rates of attempted suicide are more common in bipolar disorder than major depressive disorder, and 15 times higher than the general population (Mitchell & Malhi, 2004). While suicide in the BPD-I subgroup occurs in up to 20% of patients (Post, 2005), the BPD-II subgroup has the highest rate of suicide attempts of all affective illness (Agren & Backlund, 2007). People with BPD-II appear to have poorer quality of life and are at a higher risk of suicide than those with BPD-I (Mitchell & Malhi, 2004). Valtonen et al. (2009) found that BPD-II is associated with more frequent suicidal behaviours as individuals spend more time in risk phases (either in depression or mixed episodes). It is believed that a great percentage of individuals who commit suicide receive inadequate treatment prior to their death. Mortality rates for untreated bipolar disorder are higher than most types of heart disease and certain cancers (Access Economics, 2003). Epidemiological data show that bipolar disorder is associated with substantial impairments in both productive and social roles (Das Gupta & Guest, 2002).

Bipolar disorder is also strongly associated with lost work productivity. Olfson et al. (1997) found the illness associated with a sevenfold increase in likelihood of missing work and Zwerling et al. (2002) found that bipolar disorder was associated with a 40% reduction in the likelihood of paid employment in a U.S National sample. The social and economic effects of bipolar disorder, particularly in relation to lost work productivity and health services costs, however, are not as established as in unipolar depression (Simon, 2003).

Findings from the July 2006 Disease Control Priorities Project quantified that less than 10 % of the disease burden for bipolar disorder is being averted, mostly due to fear of stigmatisation creating obstacles to diagnosis and treatment, as well as insufficient primary health care resources, particularly in rural areas (Disease Control Priorities Project, 2006). Thus, the projected burden for the year 2020 indicates that bipolar disorder will be a significant contributor of disability globally, particularly given the fact that prevalence rates of BPD-II are considered to be genuinely increasing (Parker & Fletcher, 2008; Angst, 1998).

However, with early diagnosis, appropriate treatment and on-going therapy, bipolar disorder can be successfully managed. Findings from the American Psychiatric Association show that effective medication, in conjunction with appropriate psychotherapy allows 75 – 80% of individuals to lead relatively normal lives, but without “…treatment, patients typically spend one-fourth of their adult life in the hospital and fully one-half of their lives disabled” (Access Economics, 2003: 40).

However, there are serious problems of under-treatment and under-diagnosis of bipolar disorder (Mitchell, King & Aslam, 2004). Typically, the average time between onset and diagnosis is ten to twenty years (Access Economics, 2003). As Post (2005: 5) found, this delay can have significant life- long consequences in terms of “…delaying or preventing normal social, educational or economic advancement...”

Research by Bhugra & Flick (2005) demonstrates that improving access to care for patients with bipolar disorder requires “multilateral strategies” to influence attitudes at both the individual, community and healthcare system levels. Barriers to care include misdiagnosis, perceptions of caregivers, and poor engagement in help-seeking as a result of different explanatory models of

Page | 31

illness. A study by Simon et al. (2006) further demonstrates there are significant gaps in the long- term treatment and follow-up care of bipolar disorder. Rizzo et al. (2007) found that adolescents with bipolar disorder have significantly higher health care costs in terms of rates of hospital admissions, injury and overdose, than youth with other psychiatric disorders, further emphasising the importance of early intervention to allay the significant personal and healthcare burden over time.

Bipolar Disorder in Australia Within the Australian population, individuals with bipolar disorder have been shown to be “…four times more disabled than the general population…” (Russell et al., 2004: 2) with functional impairment considered even more problematic and distressing than that of depression (Mitchell, Slade & Andrews, 2004). The burden of disability and suffering, as well as the direct and indirect costs of the illness, are substantial. Research by Access Economics (2003) estimated that bipolar disorder will affect 1.2% of Australians in their lifetime, with 24, 001 years of health lost and real direct cost of the illness estimated at $400 million per annum. The indirect costs of the disease – signified as lost earnings, premature death, carer costs, prison, police and legal costs, etc. – are estimated to outnumber direct financial costs fourfold. The prevalence is also projected to increase by 6% by 2013, with rates of suicides estimated to rise in concordance.

In Australia, average treatment levels are less than one-quarter of what is considered ‘best practice’. In practical terms, this means that over two-thirds of bipolar individuals are likely to be misdiagnosed and the average time from onset to accurate diagnosis is over ten years (Access Economics, 2003: 6). Despite the fact that only one-third of Australians with bipolar disorder receive adequate treatment, it is estimated that this population utilises more than ten times the average number of mental health services (Access Economics, 2003: 18). The illness thus accounts for a significant burden of the public health system – a fact supported by statistics from the Australian Institute of Health and Welfare which quantified (in 1993-94) affective disorders as the second most expensive mental health item in Australia after dementia (Access Economics, 2003: 25).

Research by Highet et al. (2004) found that peoples’ experience of treatment services were less than optimal, with barriers to care highlighted as: inadequate healthcare system responses, inappropriate crisis management, difficulties accessing hospital support, inappropriate exclusion of carers from management decisions and frequent discontinuities of medical and psychological care. These factors show that there are many areas of unmet need in primary care, a situation that greatly exacerbates the social, interpersonal and economic burden of the illness.

Page | 32

Sanderson et al. (2003) examined the affordability of evidence-based health care for affective disorders in the Australian population and concluded that such a strategy should be encouraged on both efficacy and efficiency grounds. These findings beg the question as to why so few people with affective disorders are currently receiving less than optimal treatment.

The statistics of the health and social impacts of Australians with bipolar disorder paint a concerning picture. Rates of non-compliance with medication, drug and alcohol abuse, relationship breakdown, anxiety, relapse and suicide associated with the illness are high (Highet & McNair, 2004). According to the recent analyses for SANE Australia (Access Economics, 2003), people with bipolar disorder are:

o Substantially more likely to suffer co-morbid substance abuse problems than any other mental illness. In a year, 39% of Australians with bipolar disorder have drug and alcohol problems.

o Ten times more likely to have a co-morbid anxiety disorder o Three times more likely to be separated, divorced or widowed, and experiencing “substantial difficulty maintaining long-term friendships and intimate relationships”

o 15 times more likely than average to be in the lowest earning category, with occupational status twice as likely to deteriorate, with the illness causing significant disruption to employment and days lost from work

o More likely to be over-represented within the prison system and at risk of criminality. Both male and female prisoners are more likely to have bipolar disorder than the general population.

o In the Australian population, suicide is the pre-eminent cause of death of people with bipolar disorder. The estimated lifetime risk is 15%, a figure which accounts for 12% of total suicides. More than 1 in 4 attempt suicide, nearly twice the rate of Australians with depression (Access Economics, 2003).

Such findings highlight the urgent need for action. In order to effectively address the serious and enduring needs of people with bipolar disorder, there is a need to expand the research focus to address issues of diagnosis, intervention, prevention and management in order to enhance existing health care delivery systems and develop a deeper understanding of coping strategies (Disease Control Priorities Project, 2006; Mitchell et al., 2004). The data clearly underscore the fact that bipolar disorder is an urgent community and public health concern and there is a real danger that continued research neglect, coupled with the present reality of under-diagnosis and under- treatment will precipitate a “…vicious circle…that means less growth in knowledge of how best to

Page | 33

treat the illness, and hence continuation of sub-optimal treatments, non-adherence and greater suicide risk” (Access Economics, 2003: 41).

Socio-Cultural Impact It is well understood that bipolar disorder has a multifactorial aetiology. Beyond heritability, which accounts for 50% of causation, environmental factors also play a significant role in illness onset and it is to the socio-cultural context of bipolar disorder that this chapter now turns. Research shows that certain cultural variables act as potential mediators of the illness and illustrate that there are factors beyond biological ones that combine to produce a vulnerability to bipolar disorder, particularly in post-modern society.

Although symptomatology of bipolar disorder is the same across cultural groups, the development, expression and treatment are mediated through culture (Warren, 2007). Illnesses do not play out in a vacuum and the cultural environment in which the individual is exposed has an important role in course and outcome that is separate to disease factors (Andresen et al., 2003). The biological perspective is not sufficient to explain, understand and treat bipolar disorder given that it is cultural resources which shape individual’s conceptions of illness and how they appraise the meaning of pain and distress, which has important implications for health and health care (Kangas, 2001). As Johnson (2005) argues there is a need to study the impact of culture on bipolar disorder in order to untangle genetic vulnerability from environmental influences.

Given that the incidence of BPD-II appears to be increasing, it is important to examine all the factors that combine to create a pathway to illness (Parker & Fletcher, 2008). Consideration must be given to the impact of the family and socio-cultural environments and the various cultural pressures, practices or conditioning that may predict onset (Helman, 2007). Previous research has found that factors such as marital status, employment, living situation and social support are variables associated with outcome in bipolar disorder (Strakowski et al., 2007). Considerable research has also been conducted on the link between rates of depression and fish consumption, thus cultural variables of diet and country practices are implicated in the rate of mood disorders (Parker et al., 2006; Stoll et al., 1999). International air travel has also been found to be a significant factor in triggering episodes by disturbing circadian rhythms (Frank, 2000; Jones, 2001; Morriss, 2004). Lenzi et al. (1993) showed that a higher social class (defined in terms of employment, education and socio- economic levels) significantly correlates with the incidence of bipolar disorder. Another study has indicated interaction between psychosis and level of urbanicity (Kaymaz et al., 2006). Recently,

Page | 34

debate has focused on the impact of increased consumption of stimulant energy drinks and agents (Ghaemi, 2007).

Helman (2007) points out that attention should be paid to the cultural influences that shape patterns of behaviour leading to certain health conditions, such as the link between coronary heart disease and Type A behaviour in an achievement-oriented society, or dietary patterns that underlie obesity, to the emergence of certain ‘culture-bound syndromes’: workaholism, shopaholism, lottomania, sex addiction, burnout, stress, ADHD, road rage and so forth. It is therefore pertinent to consider how bipolar disorder is impacted by the norms, aspirations and expectations of modern life. For example, according to the World Health Organisation, people’s perception of their quality of life is mediated through cultural systems that determine values, goals and expectations (WHO, 1995). Similarly, Suh (2002: 16) shows that the concept of “wellbeing” is produced in collaboration between culture and the individual as “successfully living up to culturally valued norms and expectations is certainly required for psychological adjustment and mental health.” Thus, cultural norms can be regarded as one of the main determinants of behaviour in that they are involved in defining what constitutes the ‘good life’, and hence, life satisfaction (Suh et al., 1998). As Carroll (1998: 18) powerfully asserts; “Such is the power of the cultural blueprint, as psychologically binding as any genetic code.”

Further, whether certain symptoms can be expressed at all depends on the structure of society. For example, credit card spending sprees and drug and alcohol abuse “…depend on the availability of the means to carry out one’s impulses…” (Miklowitz & Johnson, 2006: 205). Cultural variables are also implicated in the pattern of comorbid substance abuse. Meyer et al. (2007) found that white, British participants more likely to report alcohol addictive tendencies compared to Asians, a finding supported by Strakowski et al. (2007) who found higher rates of mixed states and drug and alcohol abuse when comparing patients from America and Taiwan, along with significant differences in initial presentations and outcome. Johnson (2005) reflects whether cultures that have with a strong emphasis on goals and achievement impact on the course of the disorder, citing one study of rural Indians where an increase in the rate of mania over a twenty year period was traced to a concomitant rise in socio-economic status and materialistic values. The excessive activity and stimulation of the post-modern world and increased patterns of work may also impact on the individual by triggering relapse through disturbance of circadian rhythms, similar to the effect experienced by shift workers. As Bower (2000: 232/3) illustrates;

Page | 35

Staying up late night after night under the glare of artificial lights, an unheard-of-activity until quite recently, may worsen some forms of bipolar illness…Under these circumstances, the timing of the body’s sleep-wake cycle appears to become unhinged.

All these examples highlight how the cultural context can mediate gene-environment interactions.

Further, cross-cultural studies have found that ‘loose cultures’ such as Australia have fewer restrictions on behaviour and tolerate more deviations from the norm (Eid & Diener, 2001). In such permissive societies, individuals are basically free to choose how to regulate themselves. These are relevant factors when considering the easy availability of alcohol and illicit substances; the social acceptance of binge-drinking; the freedom and glorification of sexual behaviour for both genders; and the relative lack of consequences for socially unacceptable behaviour; and the self-regulatory problems that are implicated in bipolar disorder.

Culturally, it is argued, there is no longer a strong emphasis on developing internal resources and no value placed on balancing a busy life with moments of quietness, solitude, introspection or reflection. The ethos of liberal capitalism reflect the drives, urges, desires, pressures contradictions that are central to the experience of bipolar disorder. The hedonistic quality and unbridled urges, cravings and impulses of mania tend to correlate with the dominant cultural norms that emphasise liberty fulfilment of personal desires, achievement, consumerism, pursuit of pleasure, abhorrence of boredom in favour of stimulation and incessant activity; and a ‘seize the day’ mantra. As Featherstone et al. (1991: 174) highlight;

[a] consumer culture demands…a wide-awake, energetic, calculating, maximizing approach to life – it has no place for the settled, the habitual or the humdrum.

It is therefore germane to question whether such cultural pressures fuel the restlessness, drive to achieve and satiation of desires that are fundamental features of mania.

Clearly however, the scope of the socio-cultural impact on the course of bipolar disorder is too broad to be adequately addressed here.

Psychosocial Research Focus Bipolar disorder is a chronic affective mood disorder that affects three general areas of functioning – mood, cognition and behaviour. Episodes of depression or mania revolve around a surplus or depletion of energy that influence perceptual, emotional and somatic changes (Goodwin & Jamison, 1990). Symptoms fluctuate through lows, highs, mixed episodes or psychosis and this complexity and

Page | 36

variability means that treatment can be difficult. In addition bipolar disorder produces marked social consequences that impact on management and quality of life (Gagrat & Spiro, 1980).

In the past decade, research interest in bipolar disorder has risen exponentially to reflect both the growing academic and public interest in the condition. Broadly speaking, the research focus has predominantly been on definition, epidemiology and pharmacological interventions, leaving a significant gap in theoretical knowledge and a need to develop greater understanding of coping strategies. More recently, the importance of psychological and family intervention, particularly the relevance of cognitive based therapy (CBT) and psychoeducation to improve coping and inter- episode functioning, have garnered attention (Patelis-Siotis et al., 2001; Otto et al., 2003; Vieta & Colom, 2004). Neurobiologists have also focused on the structural and functional mechanisms associated with the origins and symptomatology of bipolar disorder through the use of brain- mapping techniques. Bipolar disorder is also known to cause neuropatholgic, physiologic and endocrine changes, thus there are renewed efforts in support of early intervention (Post, 2005).

However, given the severity of the illness in terms of suicide risk, poor long-term psychosocial functioning and disabling impact on relationships and employment opportunities, it can be argued that the current level of research does not sufficiently reflect the seriousness of the disease burden. The dearth of research activity in comparison to the body of work on schizophrenia, for example, leaves some to question whether the disparity reflects a wider clinical neglect of the illness (Clement, Singh & Burns, 2003). There are major limitations in the current knowledge particularly with regard to how to treat BPD-II and manage comorbidity.

Bipolar disorder has devastating emotional, psychological, social and financial effects and there is no question that, if left untreated, it is debilitating (Grounds & Armstrong, 1992). Despite the severity of psychosocial functioning, few studies have assessed the quality of life (QOL) in patients with bipolar disorder (Arnold et al. 2000; Goldberg & Harrow, 2005). Lim et al.’s (2004) examination of the psychosocial issues that are of significance for people with bipolar disorder highlight common themes as: disintegration of personality, stagnation of maturity, experience of life as chaotic and characterized by loss and deficits, inability to forecast episodes, and no understanding of what is normal. These results indicate that psychosocial impairment is related to feelings of helplessness and lack of control over moods.

Criticisms have also been directed at the reliance of the biomedical approach with the concern that many issues are being ignored with a treatment focus that “…relies too heavily on crisis response, rather than comprehensive, on-going, long-term illness management” (Bhugra & Flick, 2005: 236).

Page | 37

As Castle (2004: 232) states, given the significant psychosocial impairment for illnesses such as bipolar disorder, there is a need to commit to the “…development and validation of psychosocial interventions that can be delivered in clinical settings.” However, review of the literature reveals that research interest predominantly lies at the two extremes of the illness spectrum – managing the manic ‘highs’ or alleviating the impact of the ‘lows’. It appears that the interval linking the two illness states, the space in between, has been largely overlooked. It will be argued that the relatively ‘stable’ period between episodes of mania and depression – so-called ‘euthymic’ periods of relative healthy mood - needs much more systematic investigation, as it is this space where individuals learn to manage their illness and can most effectively work on improving psychosocial functioning, bolstering self-esteem and learning how to integrate the illness into their lives. It is also essential to shift focus from crisis management in the acute phase of the illness, to develop a firmer understanding of how individuals adapt to illness and the factors contributing to relapse. Recently, research has highlighted the importance of studying people with bipolar disorder when they are well to uncover insights about the strategies used to successfully manage the illness. The concept ‘Stay Well’ has been coined to highlight the role of personal, social, and environmental strategies in increasing resilience and reducing the impact of episodes (Russell & Browne, 2005; Russell, 2005). However, as Baker (2001) demonstrates, there has been little systematic investigation of bipolar disorder, particularly in relation to psychological treatment. Indeed, most psychosocial interventions for bipolar disorder have been developed by extending current treatments for depression.

Indisputably, bipolar disorder has biological roots but there is a concern that conceptualising it as a fundamentally biological disorder, while advantageous in reducing stigma and encouraging treatment, can also limit exploration and discussion of adjusting to the consequences of the illness. Given that the primary manifestations are behavioural and psychological (Goodwin & Jamison, 1990: 725), it is argued that bipolar disorder cannot be investigated and understood as a biochemical illness and economic burden alone.

It is also contended that comprehensive understanding of the factors contributing to treatment satisfaction, compliance and coping is being restricted by investigative frameworks that employ survey instruments limited to one or two dimensions. Biomedical approaches typically fail to take into account the constitutive role of personal beliefs and sociocultural influences in how the condition is perceived, and hence managed. For this reason, a broader analysis of the experience of bipolar disorder that takes into account its multidimensional nature, and that does not set prior limits on what can be discussed, is needed (Kessing et al., 2006).

Page | 38

For example, medication non-adherence is a major concern, yet too few studies incorporate the perspective of the patient and his/her environment in an attempt to understand factors related to treatment non-adherence (Bollini et al., 2004: 669). Lack of concordance between the understanding of clinicians and patients is evidenced in Pope & Scott’s (2003) study comparing reasons for stopping lithium. Clinicians identified ‘missing highs’ and ‘felt well, saw no need to take medication’ as the most likely reasons for non-adherence, while the most common reasons from the patients’ point of view were ‘bothered by the idea that moods were controlled by medication’ and ‘bothered by the idea of a chronic illness’. These results are further supported by Cohen (2005: 29), who found that resistance to long-term treatment is mainly attributed to “…beliefs about the disorder and its perceived controllability or consequences influenced individual adherence more than classically identified problems such as side-effects.”

Such findings illustrate that many clinicians fail to recognise that the most difficult aspects of bipolar disorder are related to adjusting to having one’s moods regulated by medication and accepting the realities of a chronic disorder. This indicates that clinicians may not be sensitive to the innermost struggles of many of their patients.

As considerable gaps in theoretical knowledge remain, greater understanding of the factors involved in optimal coping and achieving stabilisation, from the perspective of the person with bipolar disorder, are needed (Pollack, 1995). Greater attention needs to be paid to the issues and problems that are most significant to individuals with bipolar disorder and research into peoples’ health beliefs and meaning they ascribe to their condition will greatly enhance understanding of the factors that contribute to successful management (Lim et al., 2004). These have been areas of limited focus, as demonstrated by Ball et al. (2003: 43);

…cognitive adaptation to the experience of mental illness has been remarkably under- researched in contrast to the wealth of literature published on the adjustment process associated with physical illnesses such as cancer.

Relapse and Impairment Clinicians frequently define successful control of bipolar disorder in terms of functional outcome, usually measured as medication compliance and fewer hospitalizations. However, the convention to view recovery in terms of periods of remission from symptoms may result in an inadequate framework from which to understand the true impact the disease has on peoples’ lives and psychological stability. Some researchers, such as MacQueen et al. (2001: 164), have begun to focus on psychosocial outcome in bipolar disorder in order to highlight the fact that optimal treatment

Page | 39

does not only involve attainment of symptom control as studies show that “[a]t least a subset of patients may require significant rehabilitative intervention in order to minimise the high degree of morbidity associated with this disease.”

Return to baseline functioning between episodes is not sufficient to indicate recovery as even extended symptom-free periods do little to reduce the enduring psychosocial consequences of episodes (Coryell et al., 2003). As Vieta & Colom (2004: 34) point out, despite adequate pharmacological management, individuals with bipolar disorder continue to experience residual symptoms of marginal severity, causing significant distress and ongoing impairment (Lim et al., 2004: 810; Angst & Sellaro, 2000). Gitlin et al. (1995) studied rates of relapse and impairment in a sample of bipolar disorder patients. Results showed that despite continual pharmacological maintenance treatment, there was a 75% five-year risk of relapse into mania or depression. This relatively poor outcome suggests that in order to more accurately predict illness risk factors, other determinants should be considered. Judd et al. (2005) conducted a 20-year prospective follow-up study to assess psychosocial disability in individuals with BPD-I and BPD-II and found that impairment increased significantly with each increment in depression severity. The reality of persistent impairment calls for a need to re-focus on the experiences of the individual in the inter-episode euthymic phase.

While drugs are essential in the acute phase of the illness, it is increasingly evident that sole reliance on a pharmacological approach is insufficient to maintain stability and prevent recurrence. In order to enhance quality of life, it is argued that interventions should target inter-episodic functioning and help individuals cope with psychosocial impairment and the psychological consequences of past and future episodes (Vieta & Colom, 2004). It is therefore argued that there is a need to develop a more nuanced view of how individuals struggle to create order out of chaos, and a deeper understanding of the efforts to regain psychological equilibrium following the aftermath of bipolar episodes. Such explorations should bring new dimensions that greatly enrich our understanding of this complex mental illness.

Focus on the Subjective Experience In order to more accurately and comprehensively evaluate the suffering that emerges from the experience of bipolar disorder, and for the research to be ontologically significant, researchers must be willing to enter into individuals’ experiential world and not restrict the ways individuals conceive or narrate their stories (Kleinman, 1988; O’Brien, 2000). As Conrad (1990) advocates, this “insider perspective” is invaluable, as adapting to chronic illness has more to do with perception, emotion and behaviour, rather than with physiological process. Yet focus on the subjective experience of

Page | 40

bipolar disorder remains substantially limited. Sayre (2000) maintains too little attention is paid to individuals’ perspective of emotional disturbances following illness episodes. This concern is shared by Barham & Hayward (1998: 164) who argue that;

…significant questions about the value and direction of peoples’ lives might be left unaddressed or obscured by an approach that fails to describe the lives of people with bipolar disorder in terms that are appropriate to them.

In terms of existing literature, the most recent contributions have been put forward by Eyers & Parker’s (2008) edited book Managing Bipolar Disorder: An Insider’s Guide to Managing Mood Swings and Finding Balance and Berk et al.’s (2008) Living with Bipolar: A Guide to Understanding and Managing the Disorder. Prior to that, there has been limited focus on the lived experience of bipolar disorder from the individual’s perspective. Yakov’s (1980) chapter on ‘The Subjective Experience of Mania’ in Belmaker & Praag’s book, Mania: An Evolving Concept, includes personal accounts to exemplify the problem of distinguishing mania from schizophrenia during the acute manifestations of psychosis. A few personal perspectives are compiled in Wolpert’s (1977) book, Manic-Depressive Illness: A History of a Syndrome. These include Freeman’s (1971) observations on mania, Cohen et al.’s (1964) study of manic-depressive psychosis and Fromm-Reichmann’s (1948) investigation of psychotherapy of manic-depressives. Goodwin & Jamison’s (1990/2007) Manic- Depressive: Bipolar Disorders and Recurrent Depression, long regarded as the ‘bible’ for research in this area, provides a comprehensive overview of bipolar disorder and contains many references to patients’ experiences. Inclusion of these vignettes brings into focus the damaging aspects to self- identity as a result of the persistent fear of relapse.

A small number of research papers centre on personal accounts of bipolar disorder in discussing issues such as: journey through bipolar disorder (Cole, 2004); the tension between medical and personal knowing (Casey & Long, 2002); the narrative approach to psychiatric consultations (Hamkins, 2005); work stability (Tse & Walsh, 2001; Tse & Yeats, 2002); dream themes that precede mood states (Beauchemin & Hays, 1995)30; the impact of adolescent bipolar disorder on family functioning (Robertson et al., 2001) and investigation of patients’ perceptions of medication use (Castle, Morgan & Jablensky, 2002; Carder, Vuckovic & Green, 2003).

A few references to subjective perspectives of bipolar disorder are found further afield in the self- help and recovery literature (Mead & Copeland, 2000; McGrath, 2004; Lysaker & Buck, 2006;

30 Shifts to mania were identified as heralded by dreams of death and bodily injury, featuring bizarre and improbable dream themes; neutral mood states were associated with mundane, routine and uneventful dreams; while shifts to depressed or mixed states showed no consistent trends.

Page | 41

Mueser et al., 2002) and includes focus on the experience of recovery (Anonymous, 2005); diagnosis (McIntosh, 1996) and theological concerns in response to the illness (Anonymous, 2006). Even then, this contribution is limited, particularly in relation to the subjective focus on other chronic illness conditions such as cancer, HIV/AIDS and even schizophrenia31.

Impact of Diagnosis on Identity It is anticipated that receiving a diagnosis of bipolar disorder is essentially disabling, and the threat to core belief structures can profoundly disturb the construction of self. Despite the significant impact the consequences of the illness has on psychosocial development, there remains limited understanding of the precise mechanisms through which identity is shifted, shattered, reinforced or confirmed in bipolar disorder. In seeking to understand how people adapt to a diagnosis of bipolar disorder, it was judged as important to consider how individuals sustain or regain a sense of coherence and stability in their lives and how they work to maintain psychological equilibrium after being labelled ‘mentally ill’. Investigation of how people incorporate the experience of bipolar disorder into their identity and learn to negotiate an altered world-view is therefore vital in order to understand how people effectively manage across the life-trajectory of the illness. As Whybrow (1997: 35) illustrates, mood disorders:

…cannot be understood merely as an aberrant biology that has invaded the brain; for by disturbing the brain the illnesses enter and disturb the person – the feelings, behaviours and beliefs that uniquely identify the individual self. These afflictions invade and change the very core of [a person’s] being.

Inder et al. (2008) suggest it is critical to view bipolar disorder within a psychosocial developmental framework and consider the impact on self and identity given the challenges the illness presents to internal processes and the construction of self. The physical and emotional dysregulation that occurs can cause extreme disruptions, confusion and contradictions making it difficult for the individual to establish continuity in their sense of self. Pellengrini et al. (1986) reported that children with bipolar disorder had a poorer self-concept than unaffected siblings and that this could be seen as a potential psychosocial marker in high risk offspring.

31 Subjective accounts are more commonly included in research found under the broader umbrella of mental illness (Weinstein, 1972; Pickens, 1999; Hayne & Yonge, 1997). For example, Hayne’s (2003) study of reactions to diagnosis; analysis of clients’ perspectives of the nurse-patient relationships (O’Brien, 2001; Muller & Poggenpeol, 1996;) examination of patients’ experience of ECT and psychosis and client’s view of the mental health system (Koopowitz et al., 2003; Koivisto et al., 2004; Roe & Ben-Yishai, 1999; Campbell, 2006); McNair et al.’s (2002) study of perspectives of depression and Cleary et al’s (2006) analysis of the difference between patients’ and carers’ perceptions of care-giving needs.

Page | 42

Previous research by Hyden (1997: 57) has identified that a diagnosis of mental illness can be so encompassing, it becomes the “…vantage point from which all other events are viewed and to which all other events are related.” In this way, diagnosis can result in “identity-engulfment”, whereby the individual’s entire self-concept and choices become dictated by their illness. Ezzy (2000) claims that the distress experienced as a consequence of diagnosis can be powerful enough to engender a new orientation in the world and fundamentally threaten a person’s ontological framework. Karp (1992) asserts that for many diagnosed with mental illness, the ambiguity of the condition fuels a need to “cognitively reorient” experiences in order to protect their “diminished selves”. As Toombs (1993: 56) highlights, chronic illness “…is experienced by the patient not so much as a specific breakdown in the mechanical functioning of the biological body, but more fundamentally as a disintegration of his ‘world’.”

The role of chronic illness in precipitating changes in identity is well documented within medical sociology (Bleeker & Mulderij, 1992; Charmaz 1990/1997/1999; Kleinman, 1988; Leder, 1990; Robinson, 1990; Yoshida, 1993; Ciambrone, 2001; Frank, 1997/2000). Bury’s (1982) concept of chronic illness as biographical disruption made a significant contribution to the discourse, however some theorists view this theory as problematic in neglecting to consider a whole range of conditions that individuals can inherit from birth (Williams, 2000). Leder (1990) and Bleeker & Mulderij (1992) view the body in chronic pain as a body that no longer “passes us by in silence”, or as a body that “loses its silence”. Corbin & Strauss (1985) address the management of chronic illness in terms of the concept of ‘work’: ‘illness trajectory work’, ‘everyday life work’ and ‘biographical work’. Much of their research centres the impact of illness trajectory on biography. Charmaz (1997/1990) focuses on the experience of illness in terms of identity, through such notions as the “restored self”, “salvaged self” and “visions of future selves”. Yoshida (1993) pursues a theory of the “pendular self” in chronic illness, suggesting a dynamic model of identity reconstruction which swings between the nondisabled and disabled aspects of self. Fok, Chair & Lopez (2005: 174) suggest developing a “sense of coherence”, in terms of comprehensibility, manageability and meaningfulness, in order to cope with everyday life following chronic illness.

Role of Health Beliefs To this end, it is also judged as important to understand how health beliefs effect illness appraisal, meaning-making and perceptions of prognosis (Holzinger et al., 2002). There is a rich literature focusing on the importance of explanatory models of illness, building on contributions from Kleinman’s (1988) exploration of illness narratives and the context of culture; Estroff’s (1981) ethnographic work on psychiatric clients in the US; Eisenbruch’s (1990) proposal of ‘taxonomies of beliefs’ and development of the ‘Mental Distress Explanatory Model Questionnaire’, as well as the

Page | 43

importance of attending to illness narratives in order to understand the impact of illness suffering (Frank, 1997/2000/2004).

Subjective health beliefs are known to effect perceived controllability, cause, course and consequence of illness and thus are an important dimension for illuminating health behaviour (Chan & Parker, 2004; Sheikh & Furnham, 2000). It is widely understood that cognitive reappraisal and the meanings patients attach to their illness effect coping and adaptation (Caress, Luker & Owens, 2001: 716). In the literature, health beliefs have been used to examine issues of identity (Estroff, 2000), to understand reactions following diagnosis (Sayre, 2000; Mechanic & Volkart, 1960), and to compare explanatory models amongst ethnic groups (McCabe & Priebe, 2004). Lee & Poole (2005: 347) show that benefit finding and sense-making is an integral part of the adjustment process, yet the meanings people hold for their experience of bipolar disorder have not been explored. It is suggested that improved understanding in this area will benefit patient care and treatment outcomes.

For example, health beliefs have also been shown to influence treatment decisions and medication adherence (Lobban, Barrowclough & Jones, 2003; Spoont, Sayer & Nelson, 2005; Holzinger et al. 2002). Scott & Pope (2002) demonstrated that individuals’ beliefs about themselves and their control of the disorder were more important than side-effects in predicting medication adherence. Mitchell & Romans (2003) examined health beliefs in order to understand the relevance of spiritual beliefs on illness management. Findings indicated that religious variables are of “great salience” to many individuals with bipolar disorder and may provoke conceptual clashes that conflict with medical paradigms and thus a factor contributing to non-compliance.

These results suggest that further exploration of health beliefs would contribute to our understanding of outcome, highlighting perceived benefits and barriers to adherence. However, as Williams & Healy (2001: 465) caution, in considering the role of health beliefs to predict behaviour, it is important to avoid regarding them as “fixed points in time” as the process of sense-making is neither stable or persistent.

Models of Adaptation in Chronic Illness Although transitions following a diagnosis of depression are well documented (for example; Beck, 2002; Karp, 1992; Schreiber, 1996; Ridge & Ziebland, 2006), how people negotiate meaning and adaptation in bipolar disorder over time has not been specifically investigated. Pollack (1995) argues that investigation into how individuals achieve and sustain acceptance of bipolar disorder will help facilitate the development of better targeted therapeutic interventions. However, the complex

Page | 44

processes by which individuals with bipolar disorder reconcile themselves to disruption and ongoing vulnerability of the illness are by no means standard. Most studies of chronic illness show that the process of adjustment is one of flux and re-negotiation. Thus, the notion that acceptance is an implicit and static stage of adjustment in bipolar disorder, or that there is an ideal end point toward which all people with chronic illness strive, should not be assumed (Paterson, 2003).

Paterson (2003) highlights the need to appreciate the “fluctuating nature” of subjective experience in chronic illness. His overview of 250 qualitative studies rejects the notion of a predictable trajectory from diagnosis to acceptance and mastery in favour of a “Shifting Perspectives Model” that takes into account the inherent variable nature of belief structures and coping patterns. Similarly, Donnelly (1993) acknowledges that people with chronic illness constantly alternate living between the world of “both the well and the sick” (Paterson, 2003: 988); Morse (2000) found that living with chronic illness to be a constant state of flux, whilst Kleinman (1988:7) discovered that individuals tend to “oscillate between periods of exacerbation to quiescence”. This pattern of adaptation is supported by Sallfors et al.’s (2002) findings that chronically ill people continue to “oscillate between hope and despair” at different stages across the illness lifespan. Furthermore, Kralik’s (2002) exploration of the transitions experienced by women living with chronic illness illustrate that adjustment is a complex phenomenon involving movement from an “extraordinary phase” of turmoil and distress towards an “ordinary phase” of incorporation. This process was conceptualised as non-linear, sometimes cyclical and potentially recurring, raising valid methodological issues about how to adequately capture the experience of living with bipolar disorder that accounts for continual shifts in perspective (Paterson, 2003: 990).

Thus, in investigating the role of subjective health beliefs in bipolar disorder, it is important to recognise that individuals may not hold coherent or stable explanations for their illness experience. As such, coping and sense-making should be viewed as fluid and negotiable processes.

In summary, this literature overview highlights both the importance of deepening our theoretical understanding of the process of adjustment following diagnosis of bipolar disorder and, given the substantial individual and public health costs associated with the illness, the urgency of addressing gaps in knowledge. It emphasises the need for in-depth analysis of the lived experience of bipolar disorder in order to maximise the relevance of interventions that reduce the impairment of the illness over time.

In the next chapter, the reasons for adoption of the exploratory paradigm and methodological considerations are explored.

Page | 45

Methodological Considerations

This chapter outlines the aims and research design of the thesis and provides the rationale for the use of the qualitative analytic framework. The essential contribution interpretative inquiry makes to psychiatric research is also explored. Discussion focuses on specific methodological considerations of the exploratory paradigm, including issues of validity, reflexivity, bias, and ethical concerns and rapport.

Aims The aim of this thesis is to explore experiential aspects of living with bipolar disorder. To this end, an interview-based study has been conducted and theoretical interpretations of the data have been proposed. In the longer term, it is possible that these may facilitate care, understanding and public health policy. For these reasons, an exploratory framework is adopted as it allows research to delve more freely into the lived experience of illness. This framework also provides a useful vehicle for increasing practitioner insight and self-reflection (Furman et al., 2006).

Little is known about how people with bipolar disorder actually go about incorporating the consequences of the illness into their lives and manage the concomitant shift in self-identity that may ensue from the illness experience (Kralik et al., 2004). This research sets out to investigate the subjective reactions involved in the transition from ‘normal’ to ‘illness’ states. This process will entail wrestling with questions that are rarely broached in traditional psychiatric research. The exploratory framework allows the research to proceed in an open-ended way and delve into participants’ life- worlds, their reactions, feelings and attitudes involved in the journey with bipolar disorder.

Despite an emerging body of literature on the subject, understanding illness behaviour in relation to bipolar disorder is still largely fragmentary and often curtailed by the boundaries of any ‘positivist’ inquiry, which, in general, does not seek to comprehend the process of integrating the demands of bipolar disorder into everyday life. By contrast, the approach here looks beyond the disease and toward meaning and sense-making in the lifeworld (Lundman & Jansson, 2007). It is argued that the biomedical paradigm risks marginalising subjective and existential dimensions of bipolar disorder. As noted by Kelly et al. (2005), it is important to understand people’s responses to illness within the context of the priorities and concerns they hold for their whole lives. The present research thus seeks to focus inquiry to more value patient interpretations and evaluations of bipolar disorder, rather than investigating only the illness experience per se (Edwards & Titchen, 2003: 452).

Page | 46

It is argued that the complexities and impact of bipolar disorder cannot be adequately captured in any existing theorisations, that the range and impact of the illness have been consistently underestimated, and that common assumptions of what it means to live with the condition may need to be re-evaluated (Morse & Johnson, 1991). Such propositions signal the value of qualitative inquiries. Its interpretative-exploratory design can unmask information that does not usually emerge from other types of research. Indeed, the over-arching purpose of the methodological framework of this study is to promote a deeper understanding of the phenomena under investigation. By grounding the research experientially, the inquiry is re-oriented towards the corollaries of living with bipolar disorder (Ciambrone, 2001; Bradbury & Reason, 2006; Lundman & Jansson, 2007).

Exploration begins with the actualities of individuals’ experience, providing discursive space to explore “competing realities” and allow articulation of different points of view (Vidich & Lyman, 2003; Ladson-Billings, 2003). Arguably, it is this valuing of subjective depictions that can lead to an understanding of those aspects of the self that may be invalidated, undermined and changed through a diagnosis of bipolar disorder (Wyllie, 2005).

Importance of Qualitative Research in Psychiatry Some researchers, such as Richardson et al. (2000), have asked whether mental health research is at a crossroads given the unique challenges in defining the target groups and outcomes, including difficulties related to diagnosis, access, ethics and consent. There is also growing concern that positivist epistemology, which is the dominate framework in this area, is not sufficient to address the complexities of illness conditions such as bipolar disorder. It is therefore argued that in order to extend and evolve psychiatry’s breadth of knowledge, varied theoretical perspectives and different methodological techniques are required (Fossey et al., 2002). As Williams (2006) demonstrates, a more balanced discourse is needed if mental health care is to more forward and adequately meet the complex and dynamic needs of clients.

Differences in understanding disease often result in conflicting expectations about treatment, outcomes and care priorities. In order to provide the most effective care, researchers must start with an appreciation of what it is like to live with the condition. As Price (1996: 275) recommends, “getting inside the experience” is key to understanding issues such as non-compliance and the process of adjustment. Inadequate research of the patient’s perspective can result in misunderstanding the issues of significance for the individual and lead to the development of ineffective interventions (Edwards & Titchen, 2003). When focus is shifted from understanding the disease to understanding the nature of suffering and impact on daily life, the voices of the ill have

Page | 47

equal merit to those of professionals (Lundman & Jansson, 2007: 110). An interpretative approach thus seeks to situate individuals as agents and experts of their illness experience, rather than privileging professional knowledge (Conrad, 1990). By entering into patients’ experiential world, cognitive, emotional, affective, moral and behavioural concerns that are not often verbalized in dominant discourse are revealed, giving ‘real world’ relevance to research findings (Kleinman, 1988).

The primary aims of the interpretative approach are to access previously untapped data and capture authentic insight, rather than test hypotheses. Indeed, the strength of this paradigm is that it treats discovery as a stage prior to verification (Charmaz, 1990). Its value lies in its ability to illuminate the particulars of human experiences in the context of a common phenomenon, to generate theory, challenge assumptions and change how issues are conceptualised (Ayres et al., 2003; Clarke, 2004; Cutcliffe & Goward, 2000). An exploratory framework is also collaborative in the sense that it allows participants “…scope to set the agenda for what is important and meaningful…” (Macran et al., 1999: 325) and helps shift focus from understanding the disease, to understanding the nature of illness-related suffering and impact on daily life, thus giving the voices of the ill equal merit to those of professionals (Lundman & Jansson, 2007).

In addition, there is a tendency in biomedical research to view impairment and recovery as a static concept and conceptualise patients as a homogeneous group (Ciambrone, 2001; Busfield, 2000). Schwandt (2003: 465) warn against this “representational essentialising” in which one aspect of a group’s life is taken to represent the whole. Inductive analysis does not obstruct divergent perspectives as it allows individuals to speak freely and to guide the flow and content of the interview. In this way, participants are placed in a position of collaborator and are able to help set the research agenda by discussing issues that are of significance to them (Frank, 2005).

In bipolar disorder, the space between ‘acutely ill’ and ‘being well’ is poorly documented, despite the fact that many individuals fail to regain full functioning in between episodes (Ironside et al., 2003). There are also many dislocations in the process of coming to terms with bipolar disorder. As a result, there are no seamless linear narratives from diagnosis to recovery. A key strength of this approach is that it provides a method for capturing processual, rather than static analysis, whilst recognizing the multiplicity of experience and interpretations (Charmaz, 1990; Foster et al., 2006).The basic foundation of exploratory analysis is the recognition that many aspects of the illness experience extend beyond the scope of empirical inquiry and require in-depth exploration of the subjective and experiential aspects (Chapple & Rogers, 1999).

Page | 48

However, advocating for an interdisciplinary approach is not to claim that bipolar disorder does not have underlying neurobiological causes, nor that inquiry into meaning should exclude medical discourse (Pierret, 2003). As Williams (2006: 15) emphasizes, in order to avoid fragmented understanding, it is important to acknowledge biological enablements as well as constraints and “avoid retreating into former dualisms of an either/or debate.”

Methodological Considerations

Reflexivity and Bias Just as empirical science cannot claim to offer a foundation that is value free, working within a qualitative framework does not permit researchers to approach reality as a tabula rasa (Kelle, 2005). Qualitative inquirers, like all researchers, scrutinize their data through a particular lens that helps them see relevant data and abstract significant categories. As Morse (2002) highlights, the research perspective influences the nature of the product and theoretical positioning determines findings. For this reason, it is important to be transparent about the particular bias, or “angle of vision” used to interpret results and be aware of the role played in constructing data or subtly influencing the content shared (Thorne et al., 2002; Foster et al., 2006).

It is therefore crucial to acknowledge the intersubjective nature of narrative construction and recognise the influence of power, trust and interactions on the substance of the data (Hall & Callery, 2001; Kitto, Chesters & Grbich, 2008). As Fine et al. (2003: 187) argue, “methods are not passive strategies” and, for this reason, the relationship between the researcher and participant cannot be neglected. The researcher’s own presence is a “necessary ingredient” in generating questions and therefore “cannot stand apart” from the phenomena under study (Russell & Kelly, 2002). It is also the researcher who reconstructs the text of the transcript and is in charge of the interpretative analysis (Nunkoosing, 2005). Thus, a commitment to self-scrutiny is an essential component of good qualitative research, alongside a willingness to change in response to emerging results (Rowan, 2006). Investigators should identify and state their assumptions and motivations in the research topic (Tong, Sainsbury & Craig, 2007). However, as Green & Thorogood (2004: 195) point out, there are limits to our reflexivity; it is not possible for researchers to be aware of all the subconscious ways assumptions are shaped and, in turn, impact on process and approach.

In terms of this thesis it is important to acknowledge participant bias directly stemming from the recruitment strategy, given that all participants were linked to the Black Dog Institute in some way, either through involvement in support groups, resource centre activities, writing competition, clinic or as a patient of the Executive Director. A certain bias inevitably exists in terms of individuals

Page | 49

sharing the Institute’s view of how mood disorders are defined and treated. The sample cannot therefore be taken as representative of the entire population. The methodology of the in-depth interview also excludes those individuals with bipolar disorder who are not skilled in oral communication.

Seven of the participants were also directly recruited by the Primary Supervisor from his own private patients. It is possible that these individuals were directly or indirectly coerced to participate in the research study and therefore obliged provide a positive view of their medical treatment. These individuals could have felt restricted in their ability to communicate freely about their illness and their coping strategies, thereby affecting the depth and authenticity of the narratives shared.

Ethical Considerations Specific ethical considerations were raised in relation to the exploratory design of this methodological approach. The first relates to the emotional demands that may have been placed on participants in the course of telling their story, particularly where there is very real possibility of recalling painful memories. Both participant and researcher must be prepared for the release of deep emotions that may be tapped during the interview. In addition, involvement cannot be assumed to be a cathartic process, or that participants will benefit from telling their story. While many studies, such as that undertaken by Clarke (2003), have found that such participation is therapeutic, positive effects “…can never be assumed or used to justify intrusion into people’s lives” (Grinyer, 2004: 1340). The long-term effects of being a research participant in this context are not known and this fact must be made clear to all participants, both prior to consent being signed and during the interview process.

There was also a unique risk to the participants given that there was a possibility that the interview process would incite mania or trigger depression. Anticipation alone can be enough to cause the beginnings of hypomania, as was the case for some participants. The possibility of this outcome was carefully prepared for by providing opportunities to cancel the interview if escalating energy was noticed. Participants were also made aware that de-briefing by a trained counsellor and the services of the Community Resource Centre at the Black Dog Institute were available. The psychiatric expertise of the Primary Supervisor was also available in the eventuality of an emergency. Stay well information was mailed to each participant subsequent to the interview.

The second ethical concern relates to the issue of informed consent in the context of an illness that involves labile mood states, impaired reasoning and perception (Richardson et al., 2000). The specific dilemma is whether the decision to consent may have been influenced by a particular mood state and later regretted upon stabilisation. This possibility was addressed by providing the

Page | 50

opportunity to withdraw consent, and have tapes and transcripts destroyed at any time during the research process prior to submission and publication.

Related to this issue was the need to ensure participants were not rendered vulnerable or exposed by the research findings in contexts outside the research setting (Fine et al., 2003). It was therefore imperative to consider how data might be misread or appropriated once in the public domain. For example, it was important that any details included in the quoted narratives did not implicate other people, such as family member, carers, employers, health professionals, etc. The process of de- identification was thus of paramount importance and, by complying with strict standards of confidentiality, anonymity was assured. Those participants who were recruited from the Primary Supervisor’s private patient database, and those who had attended the Clinic or Support Group Program were also assured that their interview would remain confidential and that any disclosures would not affect any ongoing use of the organisation’s services.

Another ethical issue related to one case where a professional relationship had been established with one of the participants prior to their involvement in the interview. This relationship required ongoing interaction beyond the interview setting and therefore raised specific ethical considerations. The researcher had to ensure the participant was aware of the consequences of participation, in particular, to consider the long-term effect of divulging personal information to a work colleague. In order to maintain privacy and protect anonymity in the workplace, this particular interview was scheduled outside the Clinic.

Rapport In order to gain access to participants’ inner worlds and build enough trust to sustain the necessary level of intensity throughout the interview, it is paramount for the researcher to establish rapport (Cutcliffe & Goward, 2000). Generally, rapport is promoted by beginning the interview process with an open-ended question by granting opportunities for participants to ask questions. The dialogic nature of this open approach is maintained throughout the interview, allowing participants to tell their story “on their own terms” and at their own pace (Morse, 2000). This technique affirms the main features of good qualitative inquiry, namely an emphasis on understanding individuals in context, as active “constructors of meaning” (Edwards & Titchen, 2003).

Typically, the image that is presented to participants is one of an “empathetic stranger” (Owens, 1996). Kleinman (1988) suggests that the “empathetic witnessing” of suffering is essential to ensure the individual does not feel alienated from their illness. Allowing participants to discuss and react to their illness in their own terms is an important element in building a sense of authenticity (Ironside et al., 2003). Bullington et al. (2003: 330) found that participants often expressed gratitude for this

Page | 51

aspect of openness and appreciated the fact that “…they could be exactly as they were…” Trust was also facilitated by reminding participants that they were in control of the flow of the discussion and that they could stop at any time by providing real opportunities to withdraw throughout the interview.

However, it must be recognised that building rapport and providing a safe, non-judgmental communicative space does not necessarily guarantee that participants will be able to fully and freely express their stories. For many, the sheer complexity of suffering in mental illness defies explanation and specific methodological problems may extend from this very lack of everyday language to describe experiences. A major issue in assessing subjective experiences reflects limitations to communication. For example, participants may attach different meanings and experiences to the word ‘depression’ and, for this reason, shared meanings between interviewer and interviewee must not be assumed, but investigated (Stanghellini & Ballerini, 2008).

Throughout the twenty interviews, the building of rapport was not a conscious, nor consistent, strategy. Rapport was established in different ways depending on the needs and personality of each participant. For example, in some interviews, connection was made through self-revelation. By sharing personal experience, opinions and stories, a deeper sense of trust and affiliation was created between the researcher and participant. However, as this technique of self-disclosure was made intuitively on a case-by-case basis it meant that a different exchange relationship was established in some interviews and not others. This may have impacted on the degree and content of information shared. Some argue that relationships of power and exchange are implicit in self-revelation strategies. As such, researchers must be respectfully aware they are not “using self-disclosure as a manipulative tool” (Clarke, 2003: 728).

Despite the necessity for compassionate sensitivity, however, it is essential that the researcher retains separateness and avoids becoming totally immersed in the participant’s world (Owens, 1996). This distance is difficult to negotiate in instances where overt, or covert, requests for help are made, or when participants place their hopes for improvements in their lives on the researcher (Carter & Delamont, 1996). Given the in-depth, personal nature of the one-on-one interview, there is a heightened risk that researchers will be placed in a counselling role (Cannon, 1989). This happened many times during this interviews; quite a few participants became emotional and began to cry whilst sharing their story. In some cases, individuals shared information they had never revealed to anybody before, such as affairs. Some expressed a palpable sense of despair and hopelessness for their future and in their ability to control their illness. Others graphically described

Page | 52

previous suicide attempts. Participants also explicitly asked for advice, such as one woman wanting to know what to do, and where to go for help the next time she felt suicidal. One participant experienced a severe relapse in the weeks following interview and contacted the researcher out of hours for help.

These circumstances are confronting for both researcher and participant, but are made more complex by the level of trust and intimacy that is necessary established in order to successfully elicit such personal narratives. Direct appeals for advice on serious matters such as suicidal ideation and prevention strategies or relationship problems place a sense of burden and responsibility on the researcher. Clearly, the reciprocity demanded by the building of rapport must be adequately managed in these situations and firm boundaries must be set in place on the both the limitations of the professional skills of the researcher and the nature and outcome of the interview.

Validity In order to establish the credibility of qualitative research, criteria such as validity, reliability and transferability are essential. For research grounded in the experiential world, however, a different standard of validity to that traditionally sought in empirical research is required (Lincoln & Guba, 2003). Emphasis is on ensuring utility and applicability thereby elevating the concept of “pragmatic validity” over claims of value-free objectivity (Sandelowski & Barroso, 2003).

Some qualitative researchers, such as Kemmis (2006), recommend that validity should be re- conceputalised in terms of comprehensibility, accuracy, sincerity and moral appropriateness, whilst others, such as Hall & Callery (2001) define validity in terms of trustworthiness and suggest that credibility of interpretations is achieved through reproducibility. This notion is supported by Morse & Johnson (1991: 9) who maintain that relevance is the key substantiating feature of qualitative research and that any theory or model developed “…should be applicable to others who experience the same conditions of illness.” This concept is picked up by Ayres et al. (2003: 872) who assert that applicability of findings must be generalisable beyond the research sample. In summary, findings are most appropriately validated against experience. Accordingly, narrative data can be treated as valid as long as the interview is regarded as a “contextual account” and narratives as “authentic rather than true” (Green & Thorogood, 2004; Nunkoosing, 2005). Fossey et al. (2002), Kitto, Chsters & Grbich (2008) and Thorne et al., (1997) maintain that methodological rigour is achieved through evaluative and procedural thoroughness, dependent on authenticity, transparency and transferability of findings.

However, quality qualitative research findings go beyond the merely descriptive to provide information that has explanatory force. As such, themes identified will most likely occur across, and

Page | 53

beyond, individual cases. In terms of reliability therefore, standards are established by ensuring the appropriateness of sample, and adequacy of data, where adequacy is determined by the amount and relevance of the data obtained, rather than by the number of subjects (Morse & Johnson, 1991).

For this thesis, Hall & Callery’s (2001: 258) definition of validity is adopted, where validity is understood to be “…the accurate representation of features of a phenomenon that an account is intended to describe, explain or theorise.”

Study Design

Recruitment Strategy Rigourous attempts to recruit participants with a diagnosis of BPD-I or BPD-II were implemented using five different recruitment strategies, as detailed below. No objective assessment measures were employed to validate the diagnosis of participants, as this thesis is primarily concerned with analysis of the subjective experience, not whether the clinical diagnostic criteria of the illness condition were right. The interview guide, participant questionnaire and consent form are detailed in Appendices C, D and E.

Strategy 1: Referral by Primary Supervisor The Primary Supervisor is the Executive Director of the Black Dog Institute and a private psychiatrist. Eleven individuals were informed about the study and expressed an interest in participation. Seven were interviewed. Four cancelled their arranged interviews.

Strategy 2: Black Dog Institute Depression Clinic Referral The Black Dog Institute Depression Clinic is Medicare funded and offers expert assessment to clients suspected of having a mood disorder, and who have been referred by their existing GP or psychiatrist. Potential participants were identified during preliminary assessment and given an information pack about the study. Two participants were successfully recruited this way.

Strategy 3: Writing Competition The Black Dog Institute held a nation-wide writing competition in 2007 on the subject of managing the highs of bipolar disorder. A condition of entry was that essays could be used for further research purposes. Entrants living in NSW, within travelling distance of approximately half an hour to the Black Dog Institute in Randwick, were contacted by mail, informed of the study and invited to ‘tell more of their story’ (Appendix F). Out of 61 entrants, seven responded. Of these, two cancelled and five participated in an interview.

Page | 54

Strategy 4: Flyer Distribution Flyers were left in the Black Dog Institutes’ waiting rooms and Consumer & Community Resource Centre. These flyers were also distributed to members of the Black Dog Institute Bipolar Support Group by the volunteer facilitator. Eight individuals expressed an interest from this recruitment strategy. Of these, three participated in an interview, and five did not follow-up after initial contact.

Strategy 5: UNSW School of Psychiatry Bipolar Clinic The Bipolar Clinic is run by the Head of the UNSW School of Psychiatry. Clients from NSW previously assessed at the Clinic who had indicated their interest in participating in future research projects were contacted by mail. Forty one letters were sent. Four people replied; of these, three were interviewed and one cancelled.

No reasons were given for non-participation or cancellations.

Characteristics of the sample o A total of 20 participants were recruited o Sample comprised of 7 seven males & 13 thirteen females o 9 x BPD-I (1 male, 8 females) o 11 x BPD-II (6 males, 5 females) o Average number of years post-diagnosis 8.4 years o Average age at diagnosis 35.6 years o Average age at the time of interview (excluding the outlier of 70 yrs) 41.2 years old o The youngest in the sample was 23, the oldest was 70.

The following table is provided as a reference:

Page | 55

Age at ID Recruited by Gender Diagnosis interview Education Job status* (diagnosis)

2 Supervisor F BPD-I 27 (23) Yr 12 Unemployed

3 Writing Comp F BPD-I 70 (29) Graduate Retired Diploma

4 Supervisor M BPD-II 39 (32) Bachelor Degree Self-employed

5 Supervisor F BPD-II 39 (38) Bachelor Degree Unemployed

6 Resource Centre F BPD-I 50 (23) N/A Unemployed

7 Writing Comp F BPD-II 53 (52) Bachelor Degree Part-time

8 Writing Comp F BPD-I 39 (32) Bachelor Degree Self-employed

9 Writing Comp F BPD-I 36 (27) Postgrad Degree Student

10 Writing Comp M BPD-I 46 (45) Bachelor Degree Full-time

11 Resource Centre F BPD-I 43 (32) Yr 10 Unemployed

12 Supervisor F BPD-II 37 (34) TAFE Full-time

13 BDI Clinic M BPD-II 42 (41) TAFE Full-time

14 Resource Centre F BPD-II 31(31) Bachelor Degree Full-time

15 Supervisor F BPD-II 46 (43) Bachelor Degree Part-time

16 Bipolar Clinic F BPD-I 48 (45) Masters Unemployed

17 Supervisor M BPD-II 31 (29) Yr 12 Unemployed

18 Bipolar Clinic M BPD-II 51 (43) Yr 10 Full-time

19 Bipolar Clinic F BPD-I 58 (54) Bachelor Degree Retired

20 Bipolar Clinic M BPD-II 26 (25) TAFE Unemployed

21 Supervisor M BPD-II 42 (35) Apprenticeship Full-time

*Individuals with BPD-I had a higher rate of unemployment

Page | 56

Data Collection Prior to the commencement of the recorded interview, participants filled in a brief survey to gather demographic information on help-seeking and wellbeing strategies, and data relating to hospitalisations, ECT treatment, scheduling and periods of unemployment as a result of illness [Appendix D]. Survey responses were tabulated and, after data cleaning to extract any partial responses, information was quantitatively analysed manually. One survey was not returned, by the participant interviewed via telephone. One survey was only half completed as the participant had only had the diagnosis of bipolar disorder for a week and thus could not comment on wellbeing strategies.

Interviews were semi-structured and conversational in style. Each interview began with the following open-ended question: Can you tell me when you first thought that something was not quite right? However, as more interviews were conducted, common themes began to emerge and were focused on with more directed questioning in subsequent interviews. An interview guide was developed and refined following one pilot interview [Appendix 2]. In practice, participants needed little prompting and, in general, displayed an overwhelming “need to tell” (Owens et al., 2007). The interviews included complete retrospective accounts over a lifetime, to new and on-going cases, thus reflecting the diversity of illness experience in bipolar disorder and providing detailed insights into the varying phases at differing points within their illness trajectory (Biddle et al., 2007).

No time limit was set on the duration of the interviews. As participants were in charge of the direction and focus of their narratives, it was left to each individual to determine the end of their participation. Interviews were recorded and transcribed manually by the researcher. Due to the large volume of data gathered in the initial interviews, no repeat interviews were organised.

Total number of hours recorded were 18 hours and 40 minutes, which translated to 482 x A4 pages of transcribed data. The duration of interviews ranged from 55 mins to 4 hrs and 28 mins.

Setting 17 face-to-face interviews were conducted in a private room attached to the Clinic at the Black Dog Institute. One interview was recorded over the telephone. One interview was conducted off-site in the participant’s home. One interview with a work colleague was conducted in a private room at the Institute. In all cases, only the researcher and participant were present. The fact that the majority of

Page | 57

interviews were conducted in the context of a clinical setting may have affected the way participants responded, by reinforcing factors such as professional hierarchy and power.

Sampling The basis of theoretical sampling in qualitative research is the belief that the key hypotheses will emerge from the process of ongoing data analysis. Evidently, this necessitates a flexible approach as the process is potentially limitless. The objective is to continue sampling and analyzing until no new data are generated, a method known as “theoretical saturation” (Denzin & Lincoln, 2003). Selection of participants was thus determined by the need to achieve “phenomenal variation” rather than to fulfill criteria of quantity or demographic categories. In general, there are no rigid standards of sample size to adhere to when conducting qualitative research. Given the emergent nature of the findings, it is difficult to settle on an adequate number of participants a priori (Lundman & Jansson, 2007; Fine et al., 2003; Jack, 2006). Some researchers, such as Asbring (2001), assert that at least twenty respondents are needed in order to obtain sufficient breadth in terms of “variations in illness experience”. Others specifically advocate for small sample sizes given the labour-intensive nature of qualitative case-based analysis and the importance of keeping all material “…in the researcher’s mind as a totality under investigation in all stages of the research” (Crouch & McKenzie, 2006: 495). The issue of sample size in qualitative research is thus complicated. As Sandelowski (1995) points out, if a sample size is too small, data analysis will not achieve theoretical saturation; conversely, if the sample is too big, “deep, case-oriented analysis” will not be possible (Cutcliffe & Goward, 2000).

Data Analysis Qualitative exploratory analysis dictates that there are no predetermined analytic strategies or premature coding involved in the process of interpretation. Examination involves “repeated immersion” in the narratives prior to classification, and movement from naïve readings to structural analysis and interpreted whole (Thorne et al., 1997; Lundman & Jansson, 2007). The conceptual framework is continually under construction throughout the research process, as the data are continuously analysed (Crouch & McKenzie, 2006). It is for this reason that interpretative, exploratory approaches are flexible in design and why the focus of the study develops in tangent with evolving themes (Jack, 2006). The emergent nature of qualitative research findings (what Denzin & Lincoln (2003) term “bricolage”) can prove challenging as researchers can only “anticipate” how the study will proceed (Sandelowski & Barroso,2003).

Transcripts were subject to numerous readings in order to establish patterns and connections among the data. Using the method of constant comparison, a progressive process of content analysis was conducted in order identify key dimensions, and classify and clarify relevant themes.

Page | 58

The initial unstructured data were first broadly coded and the resulting ‘thick descriptions’ were increasingly refined as the relationships between conceptual categories were identified. Incremental development from general to higher-level theoretical analysis required constant interpretative engagement with the text. This discovery-focused approach meant that themes were derived inductively, rather than a priori. The principal researcher was the only one involved in coding the data. No field notes were taken to assess non-verbal information and behaviour during the interview.

The conceptual development of this dialectical process required maximum flexibility and deep exploration of meanings and patterns of phenomena that cannot be replicated through computer analysis. The major advantage of this systematic interpretative process is the generation of “circumstantiated comprehension” that includes consideration of divergent, as well as convergent, findings (Stanghellini & Ballerini, 2008; Fossey et al., 2002).

Clarke (2004) agrees that a key strength of this approach is in its ability to accommodate “discordant data” or incorporate new insights that do not conveniently ‘fit’ existing categories. It was the researcher’s responsibility to listen carefully to all voices, in particular those that were quietest, or perhaps even absent and to be careful not to let the more persuasive participants dominant interpretations or avoid over-generalizing on the basis of the dynamic or “juicy” accounts (Thorne et al., 2002). In interpreting findings, Fine et al. (2003: 187) warns against this tendency to be drawn to, or in fact code for the more exciting elements and to be conscious not to construct narratives “spiked only with hot spots”. In order to credibly represent the reality of the experience of bipolar disorder, it was important not to leave out the more mundane aspects of the illness. Throughout data analysis, identification of implicit meanings, as well as examination of what may be avoided, evaded, incongruent or later contradicted are as important to attend to as to what is explicitly discussed (Ayres et al., 2003).

Reporting Participants were de-identified and referred to by number and diagnosis (BPD-I or BPD-II). Throughout the text, direct quotations are indented and typed in a smaller font. Given the enormity of data and the tangential nature of participants’ narratives, the decision was made to condense and edit direct quotes in relation to identified themes. Pauses, repetitions and irrelevant details were omitted to facilitate reading.

Page | 59

Limitations Whilst a qualitative framework seeks to be holistic and representative, in practice there are limitations to its scope and reach. One of the main limitations of the approach is that the single interview provides “only a snapshot” of peoples’ lives (Paterson, 2003). In order to comprehensively capture the entire course of bipolar disorder and identify patterns of stability, versatility and relapse, longitudinal studies are required (Lee & Poole, 2005). Analysis could have benefited from adjunctive assessment of personality and resilience variables and participant follow-up one year after interview.

In addition, as Lawton (2003: 6) acknowledges, an in-depth interview “…predominantly draws on narratives of verbal, articulate and mentally competent adults.” In this sense, a qualitative approach cannot claim to be wholly representative of the bipolar patient population. There are also the standard problems of recall bias and social desirability responses. Bipolar disorder also involves varying states of awareness and comprehension during manic and depressed phases. This phenomenological instability can profoundly affect cognition and perception. Thus, it may be difficult for researchers to elicit accurate information on these altered states of reality (Morse, 2000). Individuals with significant symptomatology are often likely to be unable to tolerate long interviews, and as such, are often excluded from analysis and research focus.

Exploration now turns to thematic analysis of the narrative data, beginning with examination of how participants remembered the onset of their illness symptoms and the process by which they recognised the need for help.

Page | 60

PART TWO

On the Path to Bipolar Disorder

Page | 61

Onset and Awareness of Symptoms

The focus of this chapter is on understanding pathways to diagnosis and treatment. To this end, analysis of how early symptoms are recognised, interpreted and managed is useful in informing knowledge on early intervention. Information on the early manifestations of bipolar disorder is limited, despite the fact that one-third develop significant symptoms prior to the age of 15 (Post, 2005). However, research by Bellivier et al. (2003) suggests refinement of the age of onset and distinction between three “age of onset subtypes” - early (mean 17), intermediate (25) and late (40).

Duffy et al. (2007: 834) argued that failure to recognise symptomatic youth delays intervention and heightens risk of ineffective treatment, including antidepressants that may worsen illness course. The reality of the natural course of bipolar disorder being a “progressive shortening of well intervals” between episodes, also lends support for the importance of early intervention in order to protect the viability of certain brain cells (Agren & Backlund, 2007: 202).

It is argued that insight is important to understand the social consequences of illness behaviour and need for treatment (Ghaemi, 2007). However, Pallanti et al. (1999) suggest that deficiencies in self- awareness may be a distinguishing characteristic of the disorder and thus act as a “course specifier”. It is known that early indicators of emerging bipolar disorder include sleep and anxiety disorders and typically, the index mood is depressive. Mitchell (2004) found that women frequently first present in the post-partum period. Some researchers have focused on identifying prodromal symptoms, such as increased mood lability, anxious worrying, attentional problems, school role impairment, excitability, hyperalertness, somatic complaints and stubbornness (Shaw et al., 2005). Other researchers argue that assessment of emerging symtomatology is insufficient for early detection, and for this reason, the family history should be taken into account (Duffy et al. 2007).

As this chapter will show, for most individuals, ‘cues’ of illness usually take the form of a gradual deterioration of abilities and daily role performance, and that any evaluation of significance first involves “new explanations of ‘normal’ ”, rather than an assumption of illness (Biddle, 2007). It appears that it is only in retrospect that symptoms are understood to be part of a broader pattern of illness.

In order to ascertain how self-knowledge and insight into illness episodes develop, participants were asked to think back to when they ‘first became aware that something was not quite right’. There was a distinct difference for participants between remembering the first time they felt bad, the first time

Page | 62

they felt a symptom, and the first moment they recognised that such feelings might be related to illness. Memories also differed depending on which pole the disorder first manifested. For example, for some participants, initial symptoms were of an unusual but manageable ‘low’ period that did not significantly interfere with functioning and passed naturally, whilst for others, their earliest symptoms escalated into a full-blown manic episode requiring hospitalisation. In general, the majority of participants with BPD-II first identified behavioural characteristic of depression, however this may be due to the fact that hypomania is difficult to distinguish as anything problematic.

The preliminary symptoms experienced by each individual are summarised in Appendix G and highlight the diversity in age of onset and relatively inconsistent patterns of evolving bipolar disorder. In general, BPD-I was marked by unsettled agitation and distractability;

I felt symptoms from when I was a tiny thing, like four or five. My earliest memories. But I didn’t know them as symptoms, I just knew them as the world sucks. Like I felt bad. They just escalated very slowly. At 13 I’d be screaming, at 14 I’d be screaming louder, 15 I’d be screaming and kicking a wall, 16 I’d be kicking, screaming and putting holes in a wall, you know. It was like that. Constantly. # 2: BPD-I

In contrast, symptoms in BPD-II typically manifest as periods of flatness or sadness;

The first time I can remember I was about seven. It was just clear to me, it was more of a sadness, you know. Or a loneliness? I can put my finger on it cause I’d get by myself, you know, I wouldn’t mix and all that. # 18: BPD-II

Retrospective Awareness Most research shows that early intervention helps contain or minimise the oscillations of energy and, in certain cases, can significantly reduce the rate of relapse. Successful management of the illness relies on the ability to identify and act early on symptoms that point to impending episodes. According to these narratives, however, the ability to identify early symptoms is a skill that proves difficult for most individuals to master. Many participants admitted that they were unable to discern the subtle changes in their body or energy levels that heralded an impending episode.

Analysis revealed that it was only in hindsight that individuals were able to identify symptoms of bipolar disorder. This occurred even in cases where a strong family history of the illness was known. For example, individuals who grew up with a parent who was known to have been treated for depression, were no more likely to identify a pattern of illness in themselves, or seek help any earlier, than those individuals who were not cognizant of a possible genetic vulnerability. Thus, prior

Page | 63

awareness of the heritability of affective disorders does not necessarily guarantee early identification or intervention of the illness.

Evidently, recognising bipolar disorder is more than developing awareness of a pattern of vacillating moods. The symptoms of the illness, at once subtle and complex, are deeply intertwined with a person’s personality, perception and cognitions. As individuals develop, so too do the pattern and symptomatology of illness. As will be shown, bipolar disorder manifests through energy levels, behavioural idiosyncracies, ways of thinking and internal drives making it very difficult for the individual to tease out the strands of illness from their unique characteristics of self. For this reason, professional help is often not sought at the time symptoms first manifest and this delay proves costly as it allows the illness to flourish into more challenging and chaotic episodes that inevitably produce significant ‘collateral damage’ in people’s lives. This lag was common to all participants, apart from those whose earliest symptoms exhibited as psychosis and necessitated hospitalisation. It is only in ‘looking back’ that participants can delineate the signs of illness and begin to build retrospective insight into the pattern and characteristics of their (hypo)mania and depression. This is a skill that appears to develop only have numerous episodes have transpired.

As a child, I had a lot of anxiety and fear. When I was five, I called it the sore feeling. And that was like the pressure of it all, of the feeling of your sensations, like anxiety or fear. And I couldn’t sleep when I was that age. I was anxious of long nights alone. And I always remember being really scared of going into the high and not being able to sleep while the rest of them do, being wide awake, while the rest of them slept. And so the anxiety of that, having that every night, used to wind me up. # 2: BPD-I

Awareness of symptoms also proves to be a complex issue for some due to the intricacies of memory, as highlighted by the comments of one female participant;

One thing with my highs and lows, I kind of forget the emotion. I forget the feel of the emotion. You can’t remember how you felt when you were high, when you’re low and you can’t remember when you’re low, when you’re high. And when you’re neutral, you just feel like that’s you all the time. It’s really hard to remember, to feel it. # 12: BPD-II

Thus, recollection of past episodes can become distorted, making it hard to clearly decipher the pattern and course of illness, which in turn, impacts on ability to build insight;

For all those years, you just don’t recognise when it’s coming on. It’s like you’re so dumb, you’re like, bang, bang, bang! You’re like Homer going, “D’oh, d’oh, d’oh”. Like, why can’t you get it? # 15: BPD-II

It took ages, it took so long and then it was stop-start you know, I’d go for a few months and be going along fine, then something would trigger a bout of depression or something. It became a viscious

Page | 64

cycle. You don’t even think about the professional side of it, it just doesn’t enter your mind. # 18: BPD-II

No Yardstick: What is ‘Normal’ Function? It is difficult for individuals to identify a problem if they have only ever known one way of feeling and behaving;

You know, everything that happens to you, you just think that’s part of your make-up, your nature. # 11: BPD-I

To be honest, I never really sat down and thought about it because you just float along and you just take it as life, this is life, this is the way it goes and I never really took an interest in any of that stuff. You know, you hear the word manic depression and all that, but I never really thought, “Oh, I wonder what that really is, what are the symptoms?” I didn’t really take a look at it. # 18: BPD-II

Not having a yardstick to measure ‘normality’ against - in terms of healthy functioning physiology, energy levels or emotions - is problematic, and indicates that the concept of ‘normality’ is a key issue that needs to be clarified if early identification of prodromal symptoms is to be achieved;

I’ve never, ever not lived like this, do you know what I mean? So that while I can see that my behaviour might be a bit off, my body feels completely normal. Normal, my scale - high, low and all that. So yeah, I thought what my normal is probably someone else’s extreme, in terms of feelings in my body. It’s like colour-blindedness, if someone says to you, “You’re high” and you feel totally normal - but you don’t know that your normal’s not normal. Unless you feel high, you feel depressed. High is normal, to you. Do you know what I mean? # 2: BPD-I

That’s the trouble with the mania symptoms, because they’re sort of like normal feelings and cause normal things to happen. When can you say, “Oh that’s actually the manic impulse, that’s not”, you know? What’s normal excitement? You don’t want to analyse everything. # 9: BPD-I

You think you’re in a normal situation, it’s just the way it is. Like now I can look back on it, see what mistakes I was making. # 18: BPD-II

What is normal? Everyone has their own degree of normalcy. My sister said “Normal is a cycle on a washing machine”, which is so true! # 8: BPD-I

Not knowing what is ‘normal’ function, both in terms of body, mind and emotional function has implications for managing the illness. Until the oscillations of the highs and lows are recognised as part of a broader pattern of illness, and the idea of the ‘middle ground’ is recognised and defined, working towards stabilization proves difficult;

Page | 65

When you come back to, probably, normal or whatever, closer to the line, when you get close to that line, I’d say to myself, “Well why? What was that all about?” Then I sort of started to realize that the depression side of it, it’s not a normal feeling, because, you don’t get those sorts of thoughts when you’re normal. # 18: BPD-II

It wasn’t until the medicos pointed out or asked me about those sorts of things that I even knew. It was just how I thought everything was! [laughs] It wasn’t a distinct line that I could draw, necessarily, between the ups and downs. In fact in one sense, for a long time I was thinking that the ups were how life should be all the time. And any other time, things were down. So there was a stage there for quite awhile where I was thinking, it’s those ups that are the natural thing, which is just totally ridiculous. Nobody can stay up for a week or two weeks and think that’s normal, but you just do. # 4: BPD-II

While some keenly felt bewildering symptoms or sadness that were experienced as invasive and eventually problematic, this did not mean that depression was automatically suspected. This indicates that it is not intuitive for a person to know when the experience of physical or mental distress could benefit from professional help;

It took years of being unhappy before I sought counselling. In retrospect, it was depression, but I just wasn’t aware of it at the time. # 17: BPD-II

Vague Feelings of Difference Others simply experienced a vague feeling of difference but nothing that was suggestive of deeper or more enduring problems;

I always knew I was different. I always knew I saw things differently and I reacted differently. And I always thought, “Why, why was I different?” # 13: BPD-II

I sort of didn’t really look into it. I never stopped long enough to have a look. I didn’t feel different, but when I look back I can see the way I was behaving was different to the rest of [my brothers and sisters]. Not the black sheep, but didn’t fit the mould like the rest of them. # 18: BPD-II

I felt like I was looking for something my whole life. Yet, if you’d asked me what I was looking for, I couldn’t tell you. It’s tiring. Just continually, all my life. # 21: BPD-II

As bipolar disorder typically manifests in adolescence, for some participants, the symptoms of the illness were initially misinterpreted as personality problems;

My main symptoms could have been mistaken for having an obnoxious personality problem. You know? It mostly came out as attention-seeking behaviour at that period. # 2: BPD-I

I was the most wonderful, beautiful, creative child, or the devil incarnate to the other side of naughty and tantrums. I was a child of extremes. # 21: BPD-II

Page | 66

Sensing difference, or that something is not quite right but not knowing exactly what, can create a feeling of intangibility that leaves individuals confused and powerless over how best to address the problem, impacting on their sense of autonomy and control;

It’s very hard. It comes and goes with such mystery. Because I can be perfectly alright, then with seemingly no meaning, I just fall apart. At the moment I know - as much as I hope and pray that I won’t fall apart - it’s almost inevitable. [# 3: BPD-I]

I knew something was wrong. I was getting increasingly frustrated and I couldn’t understand what was going on, but I knew something was wrong. # 4: BPD-II

Participants referred to their illness as ‘bewildering’, ‘chaotic’, ‘inexplicable’, with a ‘mind of its own’ and ‘willy-nilly’. Ambiguity and uncertainty are thus shown to be a core feature of bipolar disorder. The ‘mysterious’ nature of the illness episodes produces anxiety - separate from symptoms of mania and depression - that further complicate identification and management. (The specific impact anxiety has on illness course will be discussed in more detail later). The ambiguity of early symptoms affecting individuals’ ability to identify problematic behaviours appears to highlight the valuable role of others, such as a parent, teacher, friend or health-professional in early intervention.

Some individuals gradually sensed that something was not quite right, however, this did not presuppose awareness that something was ‘wrong’;

But you see, I didn’t - like you asked me, when did you realize something’s wrong? - and I never thought, “Something’s wrong, I’m not right, I must have something wrong with me”. I thought I was just not a good person. # 2: BPD-I

I didn’t know how to interpret it. I had nothing to judge it by. Certainly didn’t think it was depression… I didn’t know what had happened to me. I had no clue and it wasn’t anything that you could hold onto, it was just something very nebulous and I knew I was just desperately unhappy. # 16: BPD-I

[Everything] just seemed so sad to me, so I think I just didn’t realise at the time that I was actually suffering depression. You just try to rationalise – why am I feeling this way? It must be this or that. You just think, “Oh, I’ll feel better tomorrow”. But then you get to the point where you just like, I’m never going to feel better. # 14: BPD-II

Lack of Balance Others could identify a lack of balance in their lives, or tendency to live life at ‘extremes’;

I was always just sort of excitable, I’ve always thought of myself as either one way or the other, found it hard to stay in the middle. # 15: BPD-II

Page | 67

I didn’t feel sad for long lengths of time. It was extreme highs, extreme going for a two-hour run, thinking I was a marathon runner, extreme, intense attractions to people that I knew that I would never want to go into a relationship with. Everything was extreme. I would just make really intense friendships with people. They wouldn’t be moderate friendships. And I would train really hard, that was my way of releasing it. And I would drink but it was totally out of my control. I would exercise extreme, I would drink extreme and I would over-eat, the anxiety would make me over-eat, and then make myself sick. And for about 12 months, I took drugs, and a lot of them in a short period of time. It’s a miracle I’m not dead. My sister would sit back and say to me, “Nothing is easy in your life. Why do you make everything a drama?” # 12: BPD-II

I’ve been a person of extremes my whole life. I’ve never had a simple life. There was no balance in my life. I could be a million miles an hour. Superman one day and 23 hours of sleep in the bed depressed. # 21: BPD-II

Typically, it is only when episodes started to recur that awareness began to build;

When you go crazy the first time, it’s completely bewildering, because I’d never experienced anything like it. You just have no idea what’s going on. Whereas the second time, people are going, “Okay, he’s going crazy again!” # 10: BPD-I

More often than not however, it is only when the disorder becomes severely chaotic, or rock-bottom is reached, that people begin to realise that they need help;

It wasn’t until I started becoming violent, having really bad episodes in my teens, that’s when we questioned whether or not I needed real help. # 2: BPD-I

Summary Investigation from the patient’s perspective of symptoms associated with the onset of bipolar disorder, and the process by which awareness of illness coalesces, is important to inform early intervention initiatives. The early confusion that has been detailed here creates substantial barriers to treatment, and as such is a relevant theme related to problems with diagnosis and pathways to care, to be picked up later in Part Three. The variability in early symptoms and the consequent difficulty in pinning down and differentiating them from the problems many expect adolescence to bring, are problematic. The implication of this chapter analysis is that information and education that could assist illness insight, particularly for adolescents at the grassroots level, is limited. Considering that delay in diagnosis is a significant issue that impedes effective treatment, more attention needs to be given to identifying early prodromes of the disorder, and, more importantly, ensure circulation of this knowledge in the wider community. It is clear that in order for individuals

Page | 68

to recognise early dysfunction of bipolar disorder the condition spirals into chaos, they need awareness of their genetic vulnerability and information on what is ‘normal’ emotional and physical function.

The following two chapters present an exploration of the phenomenology of the highs and characteristics of the ‘lows’. The purpose is to define key features that may assist in identifying patterns of episodes, and to develop a more nuanced understanding of how symptoms manifest at each ‘pole’ of the bipolar spectrum.

Page | 69

Phenomenology of the Highs

In this chapter, the common characteristics of the experience of bipolar highs that emerged from thematic data analysis are examined. Findings show that the amplified energy during (hypo)mania is typically marked by sensations of euphoria, excitement and anticipation, leading to buoyed feelings of self-confidence, increased productivity and urge to communicate and in some cases, enhanced mysticism. Investigation will focus, in particular, on how the physical sensations of a bipolar ‘upswing’ impact on behaviour and therefore have real consequences for the individual. Discussion also highlights how the rapid influx of energy impacts the way individuals experience their body, and also affects the quality of their cognitive processes. Great attention is also paid to the dysphoric features of bipolar highs, according to these narratives, typically manifest as disturbing feelings of agitation, irritability and anger that negatively impact on people’s lives.

Energy The most common sensation during escalating mania relates to amplified energy levels that intensely affect senses. The most common words used by the participants to describe this state of arousal were: buzzed, amped, revved up, electrified, tingling, wired, surge of excitable energy;

A feeling of just being wired. You’ve just got all this sort of energy. I needed to walk every night. # 5: BPD-II

It’s a real searching, a roaming sort of energy that you can feel. I’ve always had eyes that are bigger than my stomach, in terms of my energy levels. Life’s like a smorgasbord, I can do this, I can do that. I still put a lot on my plate. # 9: BPD-I

Oh, you feel like Superman. You think nothing can hurt you, and you’ve got too much energy really. It’s sort of flowin’ out of you. You’re feeling great. You feel indestructible and it does give you energy. Always looking for something to do. It’s a good feeling. # 18: BPD-II

You attract people, you give out an energy that some people can tune into. A lot of people just see you as vibrant and bubbly. # 16: BPD-I

Typically, this energy escalation occurs rapidly. In some cases, it can be accelerated by heightened sensory awareness and perceptual changes that create magnified reactions to external stimuli;

If I was on a high, I could almost get energy, like a high amount of energy from the environment. # 12: BPD-II

Page | 70

I’m very outdoorsy when I’m like that, so I’d notice the flowers, I’d notice the trees. A high almost gives you energy. # 12: BPD-II

I notice the trees, I’ll just see how rich and green that tree is, but I’ll see it more intensely. And I’ll be more tuned into colour and music, which is interesting cause I’m not traditionally someone who is tuned into anything. So something is going on with your actual perceptions. # 9: BPD-I

Finely tuned perceptions can also enhance the individual’s tendency to notice coincidences;

You’ve got this most amazing perception of what’s going on around you. You’re just so in tune, because your senses are so hyped up. You notice things, like the amount of coincidences that do happen in a day. When you’re in that state of mind, you don’t believe they’re coincidences. You analyse everything to the ‘Nth’ degree. And you believe, for whatever reason, that what’s happening wasn’t a coincidence. # 8: BPD-I

You go on this absolute manic journey of deciphering meanings, slotting everything in. You know, “Oh, that’s why [this person] called me!” That’s why this happened, that’s why that happened. Everything suddenly made sense. # 10: BPD-I

As energy becomes amplified, individuals often feel a sense of internal restlessness that often manifests as ‘busyness’;

Definitely you have a heightened amount of energy and it’s a crazy amount of energy. You cannot stop. You fiddle and you fiddle and you clean. You’ve got coffee on, and something on the afternoon, and then you’re catching up with the girls for a drink in the city, then you’ve got something else on. You’re on such a high you’ve managed to get four different dates in one week and you squeeze them in. # 12: BPD-II

Always, always sort of on edge, ready. Like always on the run, gotta go, gotta go. Can’t sit still. # 15: BPD-II

I need to move and be energetic. I’m better with grooming. Quite social, in a really chatty mood. And feeling confident about my life. So I can ring friends, I can catch up with people, I can buy presents, I get ahead of things I need. I kind of use my energy. # 9: BPD-I

For others, the amplified energy is experienced as an adrenalin rush that proves particularly useful during sport;

The high times are unreal for sport. You’re indestructible! Nothing could stop you. You just keep going. I was really good! You could get smashed in football, just get up again and “Pff”. It’s nothing. You’re on this massive adrenalin high and just this massive endorphin high or whatever they call it and nothin’ stops ya, just keep going and going and going. # 13: BPD-II

Page | 71

I was very good at sports. [It’s] like the adrenaline rush you get from drugs, the natural drugs in your body. And you like feeling that high. # 11: BPD-I

I was addicted to the adrenalin rush of extreme exercise. # 12: BPD-II

On some level, individuals may comprehend that the effusive energy is something more than themselves; the sheer intensity of energy and heightened sensation of power was compared by some participants to the guilty pleasures of drug addiction;

You know that scene in Pulp Fiction, where John Travolta’s had the heroin before he went on that date? Well, I feel like that, “I got a secret”, you know what I mean? You’re cruisin’ round, “I got a secret, I got the golden ticket, no-one knows.” Do you know what I mean? So it’s a bit like, “I have got it GOIN’ ON!” [laughing] # 14: BPD-II

It’s funny though, with the hypomania, you feel guilty about it. Like sometimes I’ll be really high and [my husband] will go, “Are you…high?” As if I’m on drugs. And I’ll go, “Yeah, I am.” I feel a bit guilty. It’s like I’m on a free high. It’s not really me, it’s something bigger than me. # 15: BPD-II

Interestingly, the subjective experience of magnified energy can also manifest externally as a phenomenon tangibly felt by others;

The ambulance came – there were about four men and they couldn’t hold me down. I was in such a bad state and they could not hold me down. Four couldn’t hold me down. The police were there too. # 2: BPD-I

There is a risk, especially for people with the BPD-I subtype, that the dramatically aroused energy becomes impossible to control once unleashed. Experiencing such dramatic shifts in energy levels can be overwhelming, particularly when the increased strength is combined with impulsivity, confusion and loss of insight. The uncontrollable nature of this state can be very frightening. Many participants recalled throwing chairs, smashing glass, starting fights and aggressively resisting help during the chaos of mania and were left bewildered by the consequences of such uncharacteristic conduct. The implications this drive has on behaviour will be discussed in more depth later.

Hypersexuality A related side-effect of the influx of energy was increased sexual drive. For certain participants this lead to accentuated sensuality, sexual confidence and flirtatious behaviour. For those who have personalities typically drawn to adventure and risk, this can be an exciting side-effect of a high. However, the increased energy of hypersexuality also lead to uncharacteristic and problematic behaviours. Thus the physiological effects of bipolar disorder cannot be separated from the psychosocial consequences;

Page | 72

I get quite flirtatious. ‘Part-woman, part-werewolf’ [laughs] It’s really feral. My friends called me the snogging queen! This one, that one, this week, the week after. So it does just show you the amazing power of confidence, mischievousness, and it does draw other people in. I guess you have no inhibitions. There’s something quite powerful about someone in that state. # 9: BPD-I

I started emailing some innocent thing, then it was getting more explicit as emails are wont to do. Totally out-of-character. I used technically correct words for things that are very, very sexually explicit, right? And I was writing exotic stories and printing them off [at work]. Like, really, really, really, my whole reputation could have gone up in smoke. I would never have been able to stand the humiliation. Ever. And there was just a lot more sexual experimentation and I was up for it all the time and whatever. You’re very vulnerable to someone taking advantage of you. # 16: BPD-I

The intensity of this sexualised power can be disconcerting, and result in uncomfortable situations and uncharacteristic behaviour that can adversely impact on relationships, reputation and self- esteem;

It’s very hard to explain what it’s like when you’re manic. It’s very, very hard to explain, but I just felt terrible, I knew something was really wrong. For one thing, I’ve always been very moderate in my sexuality but I started masturbating, occasionally, then it was every day, then it was a couple of times a day, but I wasn’t really enjoying it, do you know what I mean? I wasn’t wanting to do it. And it was always at 3 o’clock in the afternoon. # 16: BPD-I

You become very sensual when you’re manic. Just [drawn to] a new guy. I was actually feeling very, very like I wanted to go out and drink and meet someone and go home with someone. That’s how I was feeling. I start to see problems with my husband and feel that we’re not meant to be together any longer, we’re meant to break-up. # 11: BPD-I

Euphoria Related to this intensification of energy is the inducement of euphoria, which is typically experienced as a sharp peak in feelings of joy, happiness and excitement. Euphoric sensations are often discussed as one of the hallmarks of mood elevation. Understandably, it was experienced as a wholly positive feature of bipolar disorder;

The manic part is good. It’s a wonderful feeling, feeling like you can achieve anything and do anything and have so much energy, full of ideas and full of talking. I love the highs so much - these amazing feelings of euphoria that you get, you want it back, you’re prepared to put up with the crap of being depressed, just to get that good feeling, it’s worth it. You just walk on air. It’s great fun. Really good. You just feel, everything feels so good. It’s wonderful. I feel relaxed. No, I’ve got no hang-ups about any of my mania. # 11: BPD-I

Page | 73

The mania is heaven, absolute heaven. I feel I can conquer the earth. Just a lovely feeling that everything in the world is rosy. # 3: BPD-I

You’re hot. You’re the next big thing. You feel beautiful, and it feels like it’s just a holistic thing with the body. Your being, your body feels great. You feel great. You feel amazing at that point. # 2: BPD-I

You get the meaning of life given to you. It all made sense! You felt more at ease than anyone’s ever been. I almost walk around saying, “Pff – what would you know?” Yeah, it’s euphoric, it’s very much, “I’m satisfied, I know what life’s all about, I figured it out, yeehee!” # 10: BPD-I

This phase is commonly experienced as a pleasant, carefree state that generates a sense of vitality, enthusiasm and self-confidence;

If I’m not the most charismatic person with the most friends and the most popular person at every party I ever go to when I’m high, you know? I mean, that is great. It is great to have that injection of really high, like, fun, confident, happy energy, a big buzz of that all of a sudden. And I do think that makes us “special people”, especially when I see people around me taking drugs of whatever, I’m like “Ha, you don’t know, I’ve got the best stuff!” # 14: BPD-II

I felt awake, and alive. I just felt happy. Happy and talkative. I felt so good. # 5: BPD-II

I’m all outgoing and bombastic and joke around and make jokes. I can be feeling pretty good when I’m like that. # 11: BPD-I

When you’re high, you’re a bit fabulous, confident, chatty. I’ll probably make jokes which are probably a little more risqué than I normally would. And it probably comes off really well, cause you’re actually quite entertaining when you’re in that state. # 9: BPD-I

Excitement and Anticipation The sensation of excitement and anticipation is revealed through narrative analysis to be a key component of the highs. Participants described eager, expectant feelings of excitement, ‘like a kid on Christmas morning’, that is often experienced as an intensely physical feeling. Often times this internal sensation of buzzing delight spills over to impact drives and motivations and can be difficult to contain;

I just feel so excited about everything, like bursting full of like excitement, like I can’t WAIT until lunchtime and I can’t WAIT until 5 o’clock, you know. It feels like the most exciting thing that’s ever happened. You know? Just like really buzzed and I can just get such a buzz from little things. Deeply excited. # 14: BPD-II

Page | 74

I feel the physical excitement of it. The electricity, the tick tick tick, “You have to do something with this, you’re alive, you have to do something, you have to do something, you’re having these feelings, put them down, do something with them, this is special, this is special.” # 2: BPD-I

Anything I study, I get into quite intensely. Anytime I get into something, I get quite excited. I become super-fascinated, or start having moments of genius. It’s after reading for so many hours that my euphoria kicks in and I get terribly excited and I get all these great ideas, and ambitions. I sometimes have to get up and pace back and forth ‘cause I’m so excited. And I’m literally shaking with excitement. I’ll just laugh out loud, spontaneously, because I’ll have these great ideas and thoughts. # 17: BPD-II

I will feel good. I have that feeling that you get when you’re on your way to a party and you’re looking forward to it. Just that nice feeling sense of anticipation. Just that tingling, lovely feeling. # 9: BPD-I

The energising euphoria of highs can also be productive and provide a relief from depression. It is therefore understandable why many individuals are tantalisingly drawn to the exhilaration mania promises. One female welcomed the highs as a time to ‘come up for air’ while another participant expressed gratitude for having bipolar instead of melancholia, finding that the mania affords valuable periods of respite and fun between the lows.

Hypomania The experience of hypomania is less intrusive and extreme than mania. It is usually characterised by the short bursts of excitement and anticipation, described above, that elicit feelings of confidence and wellbeing. Duration varies; for some people, elevated episodes only endure for a few hours; in others, they can last days and even weeks without accelerating into uncontrollable psychosis. In general, individuals with BPD-II do not consider episodes of hypomania to cause significant problems. Clinicians agree that disturbance caused by hypomania is generally not severe enough to cause marked impairment (Mitchell, King & Aslam, 2004).

In reviewing the narratives it is clear that the happiness experienced in hypomania is difficult for individuals to discern from normal periods of wellness;

With the onset of the manic side, I felt fine! You know, I didn’t even identify that it was a different face of the same problem. # 4: BPD-II

Maybe one day I’ll feel like writing something. Or I’ll have the energy and the will, to carry it through. So hypomania for me is an entirely positive experience, because it’s the way I should be, basically. # 20: BPD-II

Page | 75

Particularly in the case of BPD-II, individuals may question whether their experiences are clinically significant, or simply a natural reaction following lifting of the depression;

It’s just a sense of wellbeing, so it’s a bit hard to differentiate between. It’s hard to know whether it’s more related to the fact that you’ve come out of this bad period and you’ve just got such enthusiasm for everything, for life, for doing things and being involved. # 7: BPD-II

When you get those stirrings that [depression] is starting to lift, I get all excited. Sometimes I do get a bit manic after [depression], because I’m so happy I want to conquer the world. # 15: BPD-II

This evidently is problematic in terms of early awareness and diagnosis of symptoms.

Self-Confidence Participants often described feelings of over-confidence that emerged during high times, that was typically experienced as a welcome relief from the usual feelings of inadequacy and lack of self- assurance. The demonstrated feelings of wellbeing highlight one of the inherent positives of a bipolar high, and clearly explain why individuals are drawn to the high times;

You are belligerent. That comes from the physical feeling, you feel indestructible. It’s ego. And then, you know, if you love yourself so much, you can actually stand up to people. Suddenly, you really like yourself, so heaven help the person that might question one of your ideas. Do you know what I mean? It’s like you have total faith in yourself. Cause you’re a well-oiled machine and you’re indestructible! [laughs] # 2: BPD-I

The confidence to go out and just walk up to someone and say g’day and start talking, especially a girl, was never on my mind. But when you’re on this massive high, you can do it. I’ve always had a really big self-doubt and lack of self-confidence. Unless you’re on that really big high. # 13: BPD-II

You definitely have less concern about other people’s feedback, which is quite nice for your confidence. Cause you’re not worrying too much. # 9: BPD-I

Productivity and Creativity Increased energy and excitement also create a sense of business, drive and productivity. Research supports the fact that milder forms of the highs are characterized by many advantageous qualities, such as “creative and expansive thinking” (Jamison, 2004: 96) and can enhance functioning in individuals with BPD-II (Judd et al., 2005). Goodwin & Jamison (2007) maintain that many positive features coincide with the destructive aspects of the condition. Johnson (2005: 250) argues that certain temperamental qualities that form part of the vulnerability of bipolar disorder, such as goal- setting tendencies, “…also promote adaptive outcomes, such as greater productivity…”

Page | 76

In general, participants attested to the benefits of hypomanic energy that can manifest in a variety of creative ways;

Because of the highs, it helped me accomplish so much more than the normal person, because I had so much more energy. # 12: BPD-II

I’d be pattin’ myself on the back cause I’d be racing around, I’d be very productive, I’d have all good ideas. # 21: BPD-II

If I’ve written something, I might just keep getting happier and happier. The last time, I wrote an epic science fiction poem, it was like four pages and it was all the right rhyming schedule and it just flew out of me. # 20: BPD-II

I’d normally sit down and write an essay on the meaning of life. It’s like you feel incredibly connected, spiritually. I just felt I was an incredibly poignant vessel, in this amazing complex construct of the universe. I’d become totally in awe of my own being, and you want to write about it, express that how that touches that feeling in your chest and how it’s just such an awe-inspiring experience to be a human being. You want to put those feelings in your chest, on paper. # 2: BPD-I

In some cases however, the influx of excitable energy, coupled with zeal for projects and ideas, can prove difficult to reign in and hints at potential downsides of uncontrolled hypomanic productivity;

I started this new [idea for a] book and I was so excited about it. Like, it was more than just being excited, like I could not turn off. I was writing things down and I wanted to get up and I looked at the computer and I thought, “Oh, I can’t wait until day-time”. I couldn’t wait for the next day. # 15: BPD-II

Grandiose type of behaviour was how it manifested with me. I’d stay up to 4 in the morning, writing my Five Year Plan and within a few days it’d be thrown in the bin sort of thing, cause the ideas in it really didn’t reflect the reality of where I was at, it reflected ideas and goals that were patently unachievable and therefore had little value but at the time that I was writing them. I was getting such a buzz, “Yeah I’ll do that next and I’ll do this next”. # 4: BPD-II

I’ve probably had a couple of ideas which were just a bit way too out there that flopped and probably hurt me financially too. Cause they were just too crazy. I suppose if you can channel it into something good, but if you channel it into something not, you’re all over the place, doing the crazy things, just going right over the edge. # 13: BPD-II

One man’s euphoria, induced by the mental stimulation of internet surfing, resulted in an intense ability to hyper-focus and absorb information. While these are valuable skills, for him, the experience inevitably leads to burnout and the acquiring of a mass of ‘useless’ information;

Page | 77

The only time I get euphoric is when I’ve procrastinated by reading websites, usually non-fiction, and getting so caught up in what I’m reading…it’s 7 in the morning and I’m still reading. I follow link after link on Wikipedia. I just follow tangent after tangent after tangent. I might be reading about something and come across a word I don’t know. So I’ll look it up, and then in the definition of that word it will refer me to something else and then I’ll read it. I’ll sit at my desk for hours on end, sometimes following a distraction on the computer. # 17: BPD-II

Many participants who experienced a surge of creativity during hypomania indicated ensuing frustrations that thwarted final accomplishment;

I remember I wanted to set up a new program and I’d get halfway and then of course I would get depressed again and that would go out the window. I’ve got so many books with creative ideas. I was writing things down and I thought, “Oh, I can’t wait until day-time”, but of course, in the morning I was just low, it’s awful. # 15: BPD-II

I really had an explosion of creativity in my mind, I started thinking about new stories and things I was going to make and do. And that really took off which was extremely gratifying, because I wondered if my creativity had been retarded, as a result of years of not having a creative outlet and having no confidence in my ability. I think I invented about six things when I was there, mechanical devices and stuff, but of course I came back and did none of it. # 17: BPD-II

I can’t type fast enough, and that will often really anger me, because if I’ve got some great ideas, I can just get them down, with all the bits intact. I’ll get a bit of it down, it’s nothing like what I wanted to get, you know. And that’s immensely frustrating, and that’s when I’ll stop and go and have a beer or something. I may have an idea that will take that much detail, [but it’ll] take so much time to get that down. My brain’s already flown ahead. So if I get a part of it done and the rest of it’s gone, I will destroy that part of it, because I can’t - it’s like a glimpse of heaven, you know. # 20: BPD-II

Partying For many people with bipolar disorder however, the burst of energy and excitement leads to excessive partying, or inappropriate activities, rather than periods of productivity;

My mania mainly comes out through partying, I think. When I’m feeling cool and high, I feel like I’m carrying the whole crew that I’m going out with, you know. # 14: BPD-II

When we’re feeling good and happy we like to be there partying and having a good time. You’re making up for lost time, really. When you’re depressed, you just miss everything and you don’t get involved in too much. # 11: BPD-I

Page | 78

I was really just a party girl. It was terrible. I think I crammed for all my exams, and I didn’t get too bad a mark, but nowhere near as much as I could’ve gotten if I had of not been completely pissed the whole time. Oh, it was so insane. # 2: BPD-I

I’ll be [clicking fingers], “Let’s go to a party, we’ve got to do something”. And during those times, you kind of go, “Well, I remember this feeling and this is where I used to get a lot of fun from.” # 20: BPD-II

According to these narratives, the experience of the highs also entailed other aspects such as increased self-confidence, over-spending, urge to communicate and heightened spiritual connection.

Urge to Communicate Another aspect common to both mania and hypomania is increased talkativeness, or urge to communicate, although it is not clear why this tendency is significantly related to a bipolar high;

I talk 100 miles an hour, really, really fast and really smart things come out of my mouth that I think, “I don’t normally know that stuff, I don’t normally know those words”. # 12: BPD-II

I knew that sometimes I could talk like, I knew that sometimes my talking was not right. Like, it’s just bizarre, like, “How did I just say all of that in one minute?” [laughs] # 14: BPD-II

You’re full of talking and you feel so good when you talk a lot. From when you’ve been really quiet to when you can really talk, you feel so much more alive, it’s really wonderful. # 11: BPD-I

I tend to have the urge to tell someone they’re wonderful or I’ll think of someone I haven’t seen for awhile and I’ll think of writing them a lovely letter - I’ll feel like reaching out. # 9: BPD-I

Spending Increased spending was also a common factor and seemed to be related to a combination of adrenalin, uncontrollable urges and loss of insight. Interestingly, the urge to buy things appeared to be as pronounced in cases of BPD-II, as in those with BPD-I. In terms of self-management, it would be interesting to investigate further at what stage in the illness cycle this increased drive to spend manifests;

I do get the urge to spend, [my] logic will just come and go. Like: ‘being a student you don’t really need that’… The urge to [spend is] stronger than the urge which says, you probably shouldn’t spend money. # 9: BPD-I

I’ve spent a lot of money and to this day I couldn’t even tell you what I spent it on, but you know, it was a feeling of, I’d always been successful so there’s always been a reasonable reward. But when I was having my manic things, certainly over a few weeks, even months that I’d go from a very, very positive and happy financial position to waiting for the next month’s pay-check because I’d just

Page | 79

cleared my bank account out. And it all seemed so logical as I was doing it. I used to just spend the money, saying. “One day I’m going to be a billionaire, so what does it matter?” # 4: BPD-II

I thought I didn’t have the money thing. And actually I’ve realised that in addition to all the money I’ve earned over the past 5 years, I spend $50 000 out of my inheritance. See, I don’t notice the spending. # 14: BPD-II

I still do stupid things, I go on mad shopping sprees. I’d get set on somethin’, like I’ve gone and bought say, five pairs of runnin’ shoes, I go to buy one pair and I can’t decide which one to get. The main thing is around the shops, I just can’t sort of, say no. And it’s stuff I don’t need. Stuff I’m probably never going to use. At the time it’s just somethin’ that I’ve got to have, I’ve got to buy it and I’ll feel satisfied, and then a week later I’ll say to myself, “Why did I buy that for? I don’t need it”. But the urge is so strong to go and do these things. If I don’t satisfy that impulse, it bugs me ‘til I do. And when that adrenalin goes, that’s when you come back to your senses and say, “Well, what did I do that for?” # 18: BPD-II

Spirituality and Mysticism Descriptions of powerful mystical experiences were also commonly highlighted in participants’ narratives. For some, increased spirituality was related to issues of meaning and significance, for others, it related to sensations of poignancy and connection;

It’s just a holistic thing with the body. Your being, your body feels great. You feel great. You feel amazing at that point. Intense joy. I still feel very connected, spiritually. There’s this joy. I can still feel the poignancy and the joy in my heart of being alive. [It’s a] kind of joyous, wonderment. Those kind of spiritual moments, my love is such a physical love at times, I just feel it in my chest. Incredible. # 2: BPD-I

This manic search for meaning that goes on and on is extremely tiring, because it sort of bounces round. You wonder where you fit in and … naturally your first stop on the manic journey was to religion. # 10: BPD-I

The religious feelings sort of bubbles up as you’re getting ill. So in the early phases, that meant I was doing things like looking at Star Signs, and that’s not something I’m interested in, normally. So there is this kind of spiritual feeling, a sort of New Agey thing, in a sense. I was starting to get my palm read, or go and get Reiki, or do all these things that I am not interested in. But they’re all kind of looking for meaning, the future, or spirituality. # 9: BPD-I

I felt that I was much more in tune with alternative ways, like a little bit of New Age stuff. [It’s] a sense that someone’s guiding you, whether it’s your Inner Self or your Higher Power. That you have the ability to be able to do things that other people can’t do. People think that spirituality means that you’re going out saying, “Oh I’m Jesus”, but it’s much more subtle. # 16: BPD-I

Page | 80

However, for some individuals with BPD-I, the expansive feelings of joy and connection turn into overwhelming Messianic delusions during psychosis;

I had the delusion that I was the next female Jesus Christ. But it’s so strong, it’s not like “I feel like going to Church”, it was “I AM Jesus!” I mean, that’s a big step. Big promotion! [laughs] It felt great! It felt like the whole of human history had moved into place, just so I could be where I needed to be at that point in time. So it was pretty exultant and grand, I guess. Beyond grand. Beyond something – it’s hard to describe. It spills over quite quickly into paranoia where you’re thinking you’re in danger. But the actual feeling that it induced was quite overwhelming. # 9: BPD-I

I started to think I was Jesus Christ. I mean I didn’t admit it, I was still functioning. [But I] started to think, “Well maybe I am THE guide”. [laughs] # 10: BPD-I

I felt like Jesus, at times. I felt [like] a very unique human being. I think I am spiritually gifted. # 2: BPD- I

While participants with BPD-II did mention increased religiosity, it was usually in terms of coping strategies;

I have been depressed so badly once, that I felt a very strong connection to Jesus. I felt I was in such a bad spot, and I felt his presence. So now, sometimes in my depression, I think of Jesus, or God, being with me. And that sort of helps. Or when I mediate, I try to focus on the love that God gives people. I mean, I do pray, “Please God, help me get out of this”, for sure. # 15: BPD-II

Thus, according to these narratives, the experience of mysticism, religious connection and spiritual delusions appear to be mainly contained to the BPD-I subtype, which may be an important diagnostic clarification.

Somatic Nature of Highs Extensive descriptions of the somatic nature of both highs and lows leave little doubt that physiology is a central characteristic of the experience of bipolar disorder. Identification of these corporeal symptoms is valuable in increasing awareness of the illness and managing early symptoms. Many participants stressed the importance of focusing on the physiological changes, rather than patterns of behaviour. It is therefore argued that somatic aspects are a key component of mood disorders that have not been adequately explored. Mainstream understanding of the illness centres on a simplistic view of a person who suffers ‘wild mood swings’ and bounces quickly from feelings of happiness to feelings of sadness. What is not often understood however is that the experience of highs and lows is intensely physical. The vignettes below illustrate the extremely embodied nature of the illness, both positive and negative;

Page | 81

I was jumping out of my skin, that’s what it feels like. # 16: BPD-I

It was like my skin was too tight for me. # 21: BPD-II

Your body is in a total high, the sensation coursing through you, everything’s electrified. Heart pounding. It’s fine saying, “I feel high”, but it’s actually it’s - I feel my heart is tense, my body’s tense, my body’s tingling with excitement-tense, ready to go, your hands are sweaty, your heart’s racing a little bit more. Sweaty hands, shallow breathing, physical lethargy, the feeling of adrenalin – endorphins, the physical anticipation, you know, the tingles, the rush all through your body, like electricity. My body felt indestructible. Like my body felt strong. Tall. Relaxed. It’s just like my body suddenly felt like a well-oiled machine. I liked the sound of my voice. I liked the way my lips felt. I could feel my lips move, I liked the way my shoulders relaxed, I felt tall. And you love being in your own body. # 2: BPD-I

It’s just a nice tingling. Like you’ve just arrived on holidays and you’re ready to explore the resort. It’s not a weird feeling, it’s normal, it’s that exact emotion - but it just sits there, it sounds strange, but I can sort of feel it in my stomach. # 9: BPD-I

It’s very tiring. I used to get a sore jaw cause I’d be really tense as well. When I went manic, I’d get a really hot forehead, hot face. I get these hot flushes, get this metallic taste in my mouth – and I thought this was excitement. # 21: BPD-II

For some participants, coming to terms with the reality of having a mental illness was made easier by focusing attention on the corporeal aspects and away from the mental and emotional. This raises the notion that bipolar disorder can be better identified by the patient as a sensation in the body instead of the unpredictable behaviour that follows. Further, this shows how vital the connection between body, mind and behaviour was to accepting to actual existence of bipolar and learning to identify it as a real phenomenon that can be managed;

This illness is detectable through symptoms that I could see and feel. And therefore, I can actually identify it, within myself. There’s proof, in a way, that it’s there. I can identify it through being perceptive to how it makes my body feel. # 2: BPD-I

The behaviours that we have do relate to how we feel and that relates to what’s happening biologically. Sometimes I just feel that sometimes it’s described from the outside. Why are you flirtatious? The reason there’s flirtations is that your whole body is just hormonal. It’s not just behaviour, it’s happening because there’s a real physiological change in your body. # 9: BPD-I

The idea that the intricate mechanism of the brain is somehow flawed and responsible for enduring physical, emotional and mental disturbances is a challenging concept to confront and may be one reason while some individuals choose to focus on the physical aspects of the disorder. However, it is

Page | 82

apparent that the physical aspects help make bipolar disorder discernable. Thus, physicality is revealed to be at the core of the experience of bipolar disorder.

‘Black’ Manias A key concept in understanding the phenomenology of bipolar disorder is that mood, cognition and psychomotor energy can move independently of each other (CME Institute of Physicians Postgraduate Press, 2007). Studies consistently identify a dysphoric component of irritability and aggression to manic episodes. Thus, as Ghaemi (2007: 124) asserts, “…in assessing the phenomenology of mania and depression, it is useful to keep in mind that these pure states are, in a way, ideal types and that the most common presentations are mixtures of both conditions.” Many clinicians, such as Thomas (2004), have suggested that the DSM-IV criteria for mania need modification in that mood should be specified as elated, depressive, anxious or irritable. The agitation caused by inner and/or motor unrest can promote fear, irritability or rage (Koukopoulos et al., 2007).

Despite the fact that some individuals can attest to the positive nature of a euphoria-based manic episode, it became overwhelmingly apparent that, for a significant proportion of the sample, the highs actually centred on sensations of agitation, irritability, aggression and anger. For this reason, these themes are presented here under the term ‘black’ manias, marked by agitation, irritability and anger/rage. The richness of the following phenomenological descriptions dramatically highlight the fact that ‘highs’ are more likely to be embodied as very agitated and negative energy states for many individuals, as evidenced by the following comments;

A couple of things that I really want to convey are that the highs are not all that good. I don’t think they’re as good as they are made out to be. And you do feel irritable and you do have trouble just organizing basic things, from the start. So it’s not a purely pleasant experience. # 9: BPD-I

I’d just go to the point of outrageousness where I’d upset people, I’d end up in fights and all that kind of stuff and it just didn’t bother me. People would punch me in the head and I’d laugh at them and stuff, so it was never a good time, it was never a happy time. # 13: BPD-I

You’ll be high, you’ll be happy, you’ll be excited, you’ll be a bit anxious, then you’ll become a little bit paranoid and you’ll become really paranoid and anxious, you’ll swing a bit, then something will trigger you and you’ll go into the psychosis, where you’re actually in a tunnel of paranoia or rage. And when you’re in the tunnel you can’t get out. So to escape that physical pain, you want to cut yourself with a knife, only to stop the pain. You don’t have time to think, it’s just all impulsive, “Stop this pain!” And so that’s when you suicide. I’ve only ever tried to kill myself in those states actually. It was rock bottom. It was the worst physical pain that I’d ever had. I called my Mum, and I said, “I’ve got to die,

Page | 83

it’s hurting too much. Like my stomach hurts, it really hurts.” It’s like having an operation without anaesthetic. That was lowest point. I think I even tried to strangle myself with a drip cord, as I was waking up, cause the pain was still there. # 2: BPD-I

Agitation and Irritability Psychomotor agitation is shown to be component of mania that is immensely distressing and uncomfortable for individuals. Research shows that agitation can interfere with care “…via threatening and escalating behaviours that lead to high-risk situations with untoward consequences” (CME Institute of Physicians Postgraduate Press, 2007: 1132). According to this sample, agitation was experienced as racing, frenetic, restless and tense energy that can result in aggression, self-harm and suicidal tendencies. Typically associated with mixed states, it is argued that agitated mania is probably the most dangerous phase of bipolar disorder and the examples below certainly attest to the sheer depth of physical, mental and emotional pain such a state provokes;

See, some of them haven’t been all good times. They’re agro and irritable and I just didn’t realise them at the time, but unbelievably agro and irritable and doing weird, freakish things. The most terrible and most absolutely frightening thing about these mixed states is that you don’t feel... It’s agitation. It’s awful. And so it’s all the thoughts, but with extra raciness, backing up all that negative stuff just makes it much worse. One very scary occasion I had, I was in one of those states, it was really bad, I had to leave work. I’d gotten so irritated I’d bit down on my knuckle - it was really terrible, I was going to go and ask for stitches, it was massive. But anyway, I just got my stuff and thought, “What is happening, what is happening, why did I do that, I’m scared, what’s happening?” And so I went home and I was crying and then I kind of got so upset and was so distressed, I was almost yelling. And then when I kind of came-to, when I kind of got a little bit better and worn myself out a bit, there was like hair in my hands and stuff [crying]. I’d like scratched all my arms and everything. Like, this is scary – I don’t want this. I don’t mind being depressed and slow and kind of sleepy, but I don’t want to feel so out of control like I don’t know what I’m going to do. # 14: BPD-II

How can I explain it to you? Have you ever had that feeling in your stomach where you know you’re in big trouble, you’re caught out doing something you shouldn’t? You know that feeling in your stomach? It’s like that, times a million, in your heart and your stomach and your chest, your arms, behind the back of your eyes, pinning your eyes open. Like a punch in the stomach – that’s a physical pain. This is like in the heart, stabbing, that kind of pain, but the pressure of it, times 10. Stabbing and it’s an urgent pain. It’s intense. It’s not good. In your head it’s just panic to get rid of the pain. Imagine a woman giving birth. Just think of the pain, she’s in the late stages of painful contractions, if you watch her giving birth, you can tell her face isn’t calm. She’s screaming, you can tell her thoughts are racy with the pain. And it’s like that too. # 2: BPD-I

Page | 84

You might be on a high, but you can still be angry and really down. And just so negative, but on such a high, the high just increases the negativeness. # 13: BPD-II

It’s a combination of good and bad up. It was like an aggressive up, and I didn’t know that that was an up. I was experiencing both of them, aggression but also this feeling that the sunset was amazing and the trees were enormous! So weird. # 5: BPD-II

As the examples above sharply illustrate, experiencing agitated energy is extremely unsettling. People describe feeling taken over by the intensity of an urgent, restless pain that compels their need to escape, or outrun the force of such a negative state;

Irritated. Wasn’t happy, wasn’t euphoric. It’s kind of like you’re in a jail and you just want to escape yourself. # 16: BPD-I

[My husband] would say, “You need to go for a walk”. Because I had that that look, or that agitation on my face, that feeling that “You need to get out of here, NOW!” I felt I had to have a walk. A really strong feeling of needing to. And at the end of it, feeling calm. # 5: BPD-II

The sheer force of a mixed state can be so terrifying that it convinces individuals of the need to do what they can to minimise relapse;

It’s only when the negative energy starts coming in that I took the meds. Before that it was like, “I don’t need that, don’t cramp my style!” # 14: BPD-II

It was more sort of irritable depression. Agitated. It’s very frightening. And after that depression, I said to myself, I will do anything, anything, to not go through that again. # 15: BPD-II

The interviews also yielded a deeper insight into the component of irritability, which is a very common feature of the illness. For some, irritation is a natural consequence of battling with the fatigue that results from rapid oscillations of energy, or a reaction to the internal pressure of the sensations that course through their body during episodes;

You might get a burst of energy, so the agitation might go for awhile, then you get tired again, and the agitation comes back. You know, your body becomes really tired during your highs. So you might feel a bit high still, but your body’s just a bit tired - that’s where the irritability comes in. And then you might have another rush and the irritability will leave, so it swings. # 2: BPD-I

You’re quite easy to irritate, cause it’s really hard to concentrate when you’ve got mild mania. Cause whatever’s happening to your brain, you immediately have to concentrate more all the time, so you’re easily sort of incensed, cause you’re having trouble doing what you’ve got to do. You’re more sensitive. # 9: BPD-I

Page | 85

Interestingly, for one participant, it was the identification of patterns of irritability that fitted between the periods of depression, which indicated possible bipolar disorder and was the catalyst for seeking a diagnosis;

When I noticed that the irritability fit into that pattern, I started to suspect bipolar. I didn’t know that irritability - which is by far more prevalent than the euphoria - and rage, was part of bipolar. I just thought it was euphoria and depression. So when I noticed the anger as being part of the cycle, I thought to myself, I’m not bipolar, I’m tri-polar. # 17: BPD-II

Some did not equate their irritability with the illness, but rather rationalised their irritable outbursts as something more akin to feeling incensed if certain principles were disregarded or challenged. It is clear from the following excerpts that some individuals with bipolar disorder hold rigid expectations of other people’s standards of behaviour, and can thus over-react in situations where they perceive someone is doing something that conflicts with their values;

I always put it down to the fact that I always try to conduct myself in a certain way, you know. So it’s probably the fact that I set myself a level to behave at and if people don’t live up to my expectations of myself, then I think that sort of ticks me off. I’ve had arguments in shopping centres, because I’m walkin’ where I want to walk, and someone’s just bumped into me because they want to go into that shop. Then it just turns into arguments and things like that. # 13: BPD-II

It is interesting to consider why this attitude, or sense of entitlement, might be correlated with bipolar disorder. It is reasonable to suppose that it indicates commonality of personality style or a temperament variable, rather than a particular symptom of the illness. However, one participant offered an alternative explanation, in stating that the tendency to ‘speak your mind’ is related to the influx of self-confidence mania can generate;

Well, you get ideas and you just think that you’re right, you’re so confident in yourself and when someone doesn’t agree with you, you get a little bit heated about it, because you’re so passionate about everything. Everything you’re saying and you’re thinking and you’re doing, you’re passionate, and when someone tries to object or say anything otherwise, it annoys you # 11: BPD-I

When agitation and irritation are mixed with impenetrable self-confidence, the end result is increased arguments;

I just attack people when I’m manic. I just get the confidence to speak up and tell them what I really think about them. I feel good saying it, because it’s the truth, it’s what I’m always thinking, it’s just that I’ve got the guts to say it for a change. It’s a confidence thing. # 11: BPD-I

Page | 86

I have arguments with strangers! Absolutely! Cause I think it’s my place to inform them of why or what they’re doing is socially irresponsible, by parking there, or taking the trolley out of the supermarket or whatever. # 14: BPD-II

I told my Agents exactly what I thought of them, and they cut my contract and cut my visa and kicked me out of the country. And that was a lesson. I was absolutely right, and absolutely righteous in what I was saying, but for my own benefit, I should have just kept my damn mouth shut. # 20: BPD-II

I was always clashing with people. # 21: BPD-II

Anger It is not surprising, given the chaotic combination of agitation, irritability and physical pain, that anger and rage also feature in these accounts. Perlis et al. (2004) suggest that the presence of anger attacks can help clinicians identify manifestations of affective instability and thereby help distinguish between depressive and bipolar disease courses. Substance abuse comorbidity also increased the likelihood of anger attacks. However, according to this sample, instances of enraged behaviour seemed more likely to occur in circumstances where individuals felt misunderstood, or when they were failing to get appropriate help for their symptoms. This could suggest that the experience of anger, unlike agitation and irritability, is not an innate characteristic of bipolar disorder, probably more of a sign of deep frustration and helplessness. Thus, it is possible that the experience of anger could be minimised if individuals found effective help for their condition quickly;

I’ve been violent in the middle of episodes. Like breaking glass, was my routine ‘ra ra ra’, get really angry. There’d be some kind of trigger, then you’d get into this tunnel vision rage, and pain. # 2: BPD-I

Once I actually cut myself, and that was because I was incredibly angry, and it was like, “Crrr, now I’ve got something to be angry about, that really hurt!” # 20: BPD-II

There were times when [my daughter] was a really little baby, she would be crying [and] I was yelling at her, just not being able to tolerate her noise. There were times when I was actually shaking the cot, “Go to sleep, go to sleep!” [My husband] never saw the physical anger I had with the children. He saw me yelling at them, kicking things, breaking windows. And that escalated to a point where I knew I had to go to hospital because I was in fear of myself. I would have these huge rages with the children, screaming at them and dragging [my daughter] up the hallway. Expecting things of them that were totally, totally unrealistic of their behaviour. If they didn’t behave a certain way, just being aggressive and getting at them, not punching them but [jabbing chest], but I got to a point where I could punch them. # 5: BPD-II

Page | 87

Of course, susceptibility to anger can also be related to personality traits, rather than innate mechanisms of the illness. However, as the following quote illustrates, the separation between the personal and the illness can be difficult to discern;

I don’t know why, but I’ve always had anger, ever since I was a little kid. Massive temper tantrums and that’s followed me all through life. It’s got me in a lot of trouble, it’s got me in a lot of situations I didn’t want to be in, it’s got me a lot of punches in the head [laughs]. I’ve always lashed out and reacted fairly aggressively. Just really angry and intolerant. I was very quick to snap, very intolerant of other people and things like that. # 13: BPD-II

For other participants, anger was ignited over social justice concerns, but this may indicate existential despair and the necessity for different therapeutic options;

For a few years I was very interested in politics and war, basically, what’s going on in the world. It would make me so angry. I would get up in the morning and get onto the internet and look at what had happened and spend hours arguing with people, with full vehemence and vitriol. And that started to depress me because I started to realise that I was just another demi-God, spouting my bit and it didn’t matter. It’s never been about me. And this is maybe a problem of transferral, like, I put it all onto the outside world. # 20: BPD-II

I’ll get pissed off about something. I’ll read about the latest thing George W. Bush has done for example, or about the child soldiers in Africa, about anything really. And get really angry about it. Often the anger is intense and excessive, but it’s not pathologically extreme. I know when I’m depressed, euphoric or irritable in a bipolar sense, when I react to everything in a consistently crappy way. And really, my mind is just looking for excuses to get angry or sad. # 17: BPD-II

Cognitive Impairment Autonomic arousal and neural hyperactivity underlying the excitatory phenomena of the highs also impact on cognitions, leading to a rapid change in the pace and quality of mental processes. The tangential and easily distractible nature of thought processes during a bipolar high were frequently mentioned. It is evident from these descriptions that it is not so much the content of thinking that alters, but the speed. This typically builds to such a pace that thinking becomes uncontrollable, and quickly overwhelms and exhausts individuals;

It was ideas spinning around, my ideas were just going really fast and I’d think about that then that then that, and something else, something else, something else. It was just going so fast. And that’s the first indication. # 11: BPD-I

My mind, even though I’m medicated, it races. Just the racing ideas, you know, “Let’s do this, let’s do that”. It could be that someone will trigger a thought, I’ll be driving and my mind will just go and I’ll

Page | 88

think, “Oh!” And I’ll write one sentence, or one line from this madness that’s been going on in my mind, down to one. I just get off sitting down and going off on those tangents! I love it. # 8: BPD-I

My brain just goes and goes and goes and goes. It’s like a wheel with things stuck to it and every so often things will fly off the wheel up into my conscious mind. # 20: BPD-II

I feel so exhausted of my brain being on over-drive for hours that I then sleep. When I wake up the next day, I’m feeling tired and lethargic and my mind is moving slowly again. It slows down during my sleep. # 17: BPD-II

I tend to overplay things in my mind, all the time. You just launch into these weird tangents that are just nothing to do with what you’re talking about. You can be sitting there talking about one thing, but in your mind, playing out about five other things. # 13: BPD-II

Your mind’s goin’ all over the place, there’s ideas comin’ everywhere. # 18: BPD-II

Obsessional Thinking and Distractability References to obsessional thinking proved to be a major feature and so it emerges that excessive ruminations may be a solid indicator of when individuals are sliding into an unwell period. As the following quotes illustrate, the nature of the obsessions vary from fixations over people, to fervent worry about situations, to uncontrollable ideas and urges, to cravings for drugs or alcohol;

When I broke up with my ex-boyfriend I obsessively could not stop thinking about him. Obsessively. And I would just go over and over and over. I knew that I didn’t want to get back with him, but I couldn’t stop thinking about him. For all that time. And it just drained me. And for a month afterwards. Every waking moment was just thinking. Thinking of him. Which is extreme. # 12: BPD-II

Symptoms? Obsessiveness. And hyper-sexuality, obsessions with people. It’s something that you’re not proud of doing, or thinking, or being like. I couldn’t understand why I had this obsessive, intense attraction to this other person. I was fighting it every step of the way, in myself. I was in this obsession, obsession, obsession, like, full-on. This obsession comes over me and I try and control it and control it and it just builds and builds and builds It’s a drive in you. It’s just something that you’re compelled to do. # 16: BPD-I

You just get it in your head and you’ve just got to do it. You cannot let it go. It will not go away until you’ve done it. And you get these compulsions, obsessive thoughts in your head to do it, no matter what time of day or night or whatever, it’s just one of those boundary things, it’s just got to be done. And from personal experience, you lose all sense of awareness of anything around you. And you get this mad focus of whatever the issue is. It’s really hard, and I have no self-control and no awareness of what I was doin’. # 13: BPD-II

Page | 89

I worry about [my Mum]. Obsessively. Especially when I go in the black hole, I get really scared that I’m going to lose her. I’d obsessively-compulsively organize and rearrange my draws to stop me from thinking about whatever I happened to think about. # 12: BPD-II

Once I get a thought in my mind, it’ll just chew my mind out until I pick it up. # 21: BPD-II

Another major theme in accounts of both the BPD-I and BPD-II subjects relates to concentration problems. Individuals noticed a distinct shift in their ability to concentrate during episodes of mania;

One of the things with my mania is that I can’t concentrate. When I’m not well, I just can’t concentrate. # 16: BPD-I

I found it hard to concentrate on one thing. I’d start one thing, then start something else. I’d start making a cake, and then I’d start making scones, or I’d start making muffins and the kitchen was a disaster area! # 19: BPD-I

If I get high, if somebody’s talking to me, and I’m thinking, “You’re boring me, you’re boring me”, I go “Try and concentrate, try and concentrate, try and concentrate”. Or if I’m sitting in bed, “Read, I want you to read, just five minutes, let’s just try five minutes”. My concentration span is that short. # 12: BPD-II

The level of distractibility that arises during a high evidently contributes to this marked loss of concentration. The following two accounts well illustrate this and it is particularly interesting to note the similarities, especially considering both participants are males in their 40s who are recovering alcoholics;

I’ve got half-finished stuff everywhere. Even from I probably didn’t channel it into the right things. when I was young, I’d go out with one specific Maybe if you channel it into schoolwork or task in hand and either get halfway there or somethin’ like that, but that’s probably what I’m halfway through and go, “Oh look, a butterfly”. tryin’ to say, I was branchin’ off all the time. You Just go off in a total different tangent. And then can [concentrate] for short periods and then you halfway through there go, “Oh, look, a lizard!” hop to somethin’ else. I still do that now, start a You know, or I’d go out to hose the garden but job at home, I’ll decide to fix the tap and I’ll go the garden hose is broken and I’d go into the and get the tools and then I’ll look at the tool garage to fix the hose and go, “Oh, that tool and think that needs fixing itself and then I’ll go needs sharpening” and halfway through and get maybe some oil or get another tool and sharpening it go, “Oh, I’ll go and do this” and start muckin’ around, you know, forget about just, unfinished stuff, in a matter of hours, just the tap and just keep gettin’ branched off. Or I’ll have junk everywhere. Stuff everywhere and pass the chair and think, “Oh that chair needs

Page | 90

half-finished things everywhere, and at the end fixing”, on the way to get the tool to fix the tap. of the day I’d think, “Jeez, I’ve done nothin’ You’re two steps ahead of yourself, like what I’m today! I’ve made a big mess, but I’ve done supposed to be concentrating on now, I’m nothin’!” [laughs] I could never say to you what thinking what I’ve got to do, the next couple of mood I was in when I went off on one of those things I’m gonna do, you know. If I focus I can mad tangents, but I just know that I do it. And I concentrate, but no, it wanders off all the time. just lose the plot! You know, I’ll set out to do one I’d have to really try, it’s really hard to hold onto thing and I’ll do ten things, and a percentage of it, I have to really remind myself, “Don’t wander others and I’m like, “What have I done?” And away” and eventually you do. You forget to everyone’s looking at me going, “Yeah, what are remind yourself and you wander away. # 18: you doin’?” [laughs] # 13: BPD-II BPD-II

Summary This chapter reveals important aspects of the lived experience of the highs of bipolar disorder that are not often raised in the research literature. For example, while it is known that episodes of highs involve oscillating spikes of energy, mood and behaviour, and can involve psychomotor disturbances, changes to sleeping patterns, drive, energy and self-confidence, what is not well understood is how these aspects affect the individual on a daily basis. Further, there is limited understanding of how features of ‘black manias’, such as dysphoria, distractability, irritability, agitation and obsessional thinking, are integrated into people’s lives. In-depth analysis illustrates how intrusive the physical symptoms of highs can be and shows how episodes often begin with bodily disturbances. This evidence indicates more attention needs to be paid to the somatic nature of (hypo)mania, as, according to these participants’ accounts, it is sensations that build to culminate in impaired mood and behaviour and may be particularly important in terms of identifying true early warning signs. This examination also points to the fact that spirituality and mysticism are factors more likely to occur in BPD-I, which suggest an important diagnostic distinction.

In the following chapter, focus shifts to the other end of the spectrum in an analysis of the subjective experience of bipolar depression.

Page | 91

Characteristics of the Lows

This chapter examine the key characteristics of depression, focusing on aspects such as cognitive impairments, psychomotor retardation and anhedonia. Findings by Post (2005) shows that individuals with bipolar disorder spend more time depressed than manic. Mitchell & Malhi (2004) have put forward the concept of a distinct “bipolar depression signature” and argue that the depressed phase of bipolar disorder has been significantly underestimated. Given that bipolar disorder is a major contributor to disability and mortality, they suggested that more research is needed to understand the “predominant affect” of the bipolar condition – the lows. This analysis highlights that the severity of depression appears similar for both subtypes of bipolar disorder (BPD-I and BPD-II) and this finding encourages a move away from referring to BPD-I as the more severe form of bipolar disorder.

Physical Lethargy As for descriptions of the highs, it is the physical aspect of the lows that inteviewees heavily emphasised over the emotional aspects. The experience of bipolar depression severely impacts on physiological and bodily functioning. These episodes are defined by extreme physical lethargy that manifests as stupor, inertia, and in debilitating loss of energy;

I slow right down when I’m depressed. I relate it to wading through a vat of honey. You just can’t get started. It’s just so hard. # 21: BPD-II

It was more like the exhaustion of it all. I can’t have a shower, I can’t, you don’t have the energy in your muscles to have a shower. I can’t do it. You can’t get out of bed, your limbs are affected. It’s the opposite of the electricity from the high. You’re just comatosed. I was fucked. Can’t move. And you’re just behind glass, you just feel really sapped of any motivation to do anything. # 2: BPD-I

Feeling that I was walking through quicksand in everything I had to do. You couldn’t be bothered! It’s that kind of frozenness, or inability to do anything, which actually kind of saves you. # 16: BPD-I

Every day was just excruciating. I couldn’t eat. Physically couldn’t put food in my mouth. Couldn’t talk much. I don’t think people know how bad it is. Cause you’re just stuck in a corner, feeling terrible. # 9: BPD-I

Not motivated, and agitated and anxious. Just staying in bed, not being able to lift my arms or legs, so exhausted. Just sleeping. Not even sleeping. You don’t sleep. You could go all night without sleeping, but you’re almost hypnotized, your eyes are sort of closed, but you’re not sound asleep, but your hands are so heavy, your legs are so heavy and you almost get off on the feeling of being

Page | 92

anaesthetised. Not a nice feeling. I have stayed in bed for 24 hours, on a number of occasions. I couldn’t get up. You honestly can’t move. # 12: BPD-II

I can feel the paralysis coming in, you know, like it’s very hard to make a cup of coffee or do anything good for yourself. # 15: BPD-II

You could feel it, it’d just start, the dark feelings and then they’d just get worse and worse. I couldn’t do anything, couldn’t get out of bed. I was awake but I couldn’t get up. It was an effort just to get out of bed. It’s really weird. To drag you down physically, I know it stuffs you mentally, but to get to your body, you just don’t want to get up. # 18: BPD=II

I’d get up and I’d walk over there, but if I passed something that I could sit on I’d just go, “Ugghh”’ [flops]. And I’d try and have something to eat, then I’d crawl back into bed. # 21: BPD-II

It is apparent from these descriptions that the distinguishing feature of bipolar depression is a draining of energy so absolute it can leave individuals incapable of action. A glance at the adjectives used in the above descriptions paints a clear picture of the lived experience of the lows: hypnotised, paralysed, wading through honey, comatosed, sapped, walking through quicksand, anaesthetised, weighed down, heavy, exhausted and paralysis. In essence, these qualities are very different from accounts of non-melancholic depression and this distinction may help delineate unipolar depression from bipolar depression.

For some, this energy depletion is a natural consequence following mania;

It’s just the swing from the excitement of the high. It’s just a swing from putting all that feeling and emotion and focus and physical energy into that, you have no more left and you cannot have a shower. # 2: BPD-I

However, the downwards swing does not always reach a state of complete incapacity where the individual feels completely engulfed or consumed by the relentlessness of the pain. Participants can also experience less severe lows that allow them to function, but it is clear that quality of life is still very impaired;

Sometimes you can be on a slight, a mild depression for a while, too. You don’t go right down, just plod away and just survive on a day-to-day basis. You need to put the washing out, you do it. You build up to it, and you can still do it. You can get to work, or you don’t feel like you’re laughing very much, but you can still talk alright. # 15: BPD-II

I wasn’t not doing what I had to do. I was putting one foot in front of the other and I was going to school and I was acting, just going through the motions. # 16: BPD-I

Page | 93

I just lived from day to day. I didn’t really have any life. Sort of slept and ate and did what I had to do, sort of thing. # 5: BPD-II

I was just like a hobbit that would go to and from work. I wasn’t doing anything, I wasn’t even smoking cigarettes, I didn’t want to go to the shop and ask for a packet of cigarettes, just didn’t want to have to have any conversation with anyone that wasn’t 100% necessary, like a work conversation. # 14: BPD-II

I just put up with it, and put up with it and just got through my day as I could. # 11: BPD-I

Anomie, Anhedonia, Isolation After physical lethargy, the main characteristic of bipolar depression according to this sample is the experience of blunted emotions. Participants described feelings of detachment and emptiness that most commonly manifest as a sense of flatness, or of being somehow separated from the rest of the world. This absence of feeling can be so profound that life seems to lose its meaning (Whybrow, 1997);

It was that feeling but much worse, of detachment and blunted emotions. I became totally detached from everyone and everything, I was emotionally dead. I had no emotions, no happiness, sadness, joy, nothing. I didn’t have enough emotion to think about it, to care about it, nothing. I didn’t have any feelings, I felt that there was a glass wall around me. And it was horrible. # 16: BPD-I

It all felt like I was in a bubble, like [my children] weren’t mine or something, that this wasn’t my life. Although I cared for them in every way, I knew I had to cuddle them, I had to read to them, feed them, they didn’t miss out on anything there. I suppose it was the bond. I wasn’t feeling it, and I didn’t really feel it with [my husband] anymore either. Knowing that you maybe should be feeling something, but you’re actually not. [Seeing] them through some sort of strange, distant fog. I felt this slow deterioration in all of my capacities until the point where I was admitted to hospital. # 5: BPD-II

The glass wall is often one that I feel, cause I can’t get in contact with people on the other side. It’s like there’s a wall, I can see them all having fun and I’m not jealous at all, but I just want so much to be back with [my family] because I miss them. # 15: BPD-II

You just feel blah. You don’t have any energy to feel anything. You just feel like there’s a glass in front of you and you don’t have the energy to feel anything about the world. And that’s not a good feeling. # 2: BPD-I

You can’t get enjoyment out of anything, especially with children, all that sort of stuff, their achievements, you should be enjoyin’ it, but I just couldn’t get any enjoyment out of anything. # 18: BPD-II

Page | 94

I can get up in the morning and just want to go back to bed. And feel awful, but it’s not an emotional feeling, it comes out in a physical feeling. Just, flat. It’s probably because I’m tensing up. I’ll start to get intestinal troubles, I’ll be clenching my fists, or whatever. To look at me, you wouldn’t think I was agitated at all, you’d think I was almost comatosed. I just don’t want to do anything. It feels like, it thinks like, rational apathy. # 20: BPD-II

Thus, apathetic flatness appears to be a common to the experience of bipolar depression. As the following quote illustrates however, this numb state of anomie often begins slowly and can be overlooked, before it quickly builds into a deep depression that is impossible to lift. This indicates that individuals who are able to recognise this phase of emotional flat-lining may be able to seek early intervention and successfully head off a full-blown episode;

I didn’t feel anything. All I felt was the worst, heaviest, most unrelenting depression that I’d ever felt. It was a bad one. Totally unmedicated, just cruisin’ in the darkness. That episode went into a full- blown mode, picking up its own momentum, completely uninterrupted and I was just so foolish to let that happen. But I think it just happens so incrementally, slowly that you just don’t notice until you’re completely engulfed by it. # 14: BPD-II

For other individuals, the only feeling they have throughout depressive episode is a keen sense of isolation;

It was more of a sadness. Or a loneliness? I’d get by myself, I wouldn’t mix and all that. I’d just sort of go away. # 18: BPD-II

Desperately unhappy, but in an isolated way. It was definitely a feeling of being totally isolated, totally cut off. # 16: BPD-I

Withdrawal and retreat were key features during the lows and further highlight the negative impact depression has on peoples’ quality of life;

I couldn’t function. I used to dread it when the sun started to come up. Like you’d hear the birds first, before the sun came up, and I’d hear them and I’d say, “Oh no, not another day”. I liked it better when it was dark. And that’s probably cause I didn’t have to get up, I didn’t have to face the world. # 18: BPD-II

I want to hide from the world. I want to sleep. For me, sleep’s like a drug, because it’s an optional reality. It’s like I’m not in the world. I’m asleep. I just didn’t want to be in reality. # 21: BPD-II

I think the reason I frequently sleep in, is because tomorrow’s another day. And no day has ever been so enjoyable that I’d want to do it again. # 17: BPD-II

Page | 95

I did a lot of sleeping, even though you don’t sleep that well when you’re depressed. You just want to sleep, because you just want the day to end. # 11: BPD-I

Tried to sleep as much as could, just to not be awake. # 9: BPD-I

Negative Ruminations Predictably, thinking styles become increasingly negative during the lows, however, the nature of the ruminations varies from individual to individual;

It’s very much the thoughts that make it the worst thing. They’re just kind of focused round being shit. Just to do with self-esteem and also terrible anxiety and worry about the future. You can just imagine my brain is just looking for things to be negative about. It’s just that feeling, just so miserable, of unending sadness. [It’s] just relentless man. # 14: BPD-II

You’re constantly talking to yourself in your mind, just thinking about things in your mind, slowly. Monotonous things, like how you feel like not doing anything. # 11: BPD-I

My mind would just turn over the past and think of everything I’d ever done as a mistake. And I’d grip onto this idea that I was never going to work again. That I was just washed up. That I was always going to live in a corner of my parents’ house and never be seen again. # 9: BPD-I

What I do know is that when I’m depressed I’ll worry about all sorts of things that I don’t even care about when I’m not depressed. You know, the dirt in the cracks over there, or the dent in the furniture, or the cigarette butt on the footpath – I’ll just see those as reality when I’m not down. When I am down, all these things just make me feel like everything’s just wrong. # 17: BPD-II

Just all negative thoughts. Anything that, for instance, if you say, “Oh, I’ll get up and walk up the road and get the paper”, I’d say, “No, I might get run over”. Stuff like that, crazy stuff. Or you’d get in the car and just drive down the beach or something - “Oh no, I might smash into somebody.” It’s all twisted around. # 18: BPD-II

A lot of catastrophising. A lot of really negative thinking. Doing heaps and heaps of head miles. And fear, there’s a lot of fear mixed in with that as well. For me, the depression magnifies the fear. # 21: BPD-II

Interestingly, for one participant, the ability to think clearly was a sign that her depression was lifting;

When I came out of it, my head was so clear. I could think clearly, it had gone. It was like something out of my head! # 7: BPD-II

Page | 96

Another feature common to a bipolar low was increasingly poor concentration that led to inability to make even the simplest of decisions;

In the morning I’d think, “Shit, I have to cook dinner, how am I going to do that?” I had to make a decision, but I couldn’t decide what to have. And then I’ve got to get dressed, then I’ve got to get in the car to get to the shops, I’ve got to find a parking spot, then I’ve got to walk to the shops and, every little step seemed impossible. It just was so hard. # 16: BPD-II

You don’t have any motivation. Everything’s an effort. Even decision-making, like what to cook for dinner or what to put on to wear that morning. Everything that normally you just think for one second, “Yeah I’ll wear that, yeah I’ll cook that.” Everything’s sluggish and slow and it just becomes a big effort and a big drain on you. # 11: BPD-I

I couldn’t decide what clothes I’d put on. I’d get up and not be able to choose what to wear. # 3: BPD-I

Suicidal Tendencies As previously highlighted in the literature review, the high rate of suicide in bipolar disorder is a significant public health concern that requires urgent attention.

Suicidal rumination is known to be a symptom of depression. Thirteen out of the 20 participants admitted to attempting suicide, some multiple times;

The lowest low for me, is wanting to take me own life. I just couldn’t see hope. Like that flame, that flicker of spirit I had nearly went out, you know. And you can’t be any lower than that. It was like life was just too hard, way too hard, too tiring. You know, I had no joy in my life, I had nothing to look forward. # 21: BPD-II

I definitely got suicidal thoughts. At the time, it just comes across as real thoughts, real options. # 9: BPD-I

The weight one has been a big one for me, with bipolar. And largely fed into the suicidal thoughts that I had as well, because I’d think, “How am I ever going to get out of this? How am I ever going to get to normal, inside and outside?” I remember being desperately unhappy about my weight, and being so ashamed and embarrassed for anyone to see me. And so I did think a lot of suicide then, because I didn’t want anyone to see me. I think it’s been a lot intertwined, the two. # 14: BPD-II

Clearly, for both BPD-I and BPD-II subtypes it is clear that the pain of depression is one of the hardest aspects of the illness for sufferers to endure;

It’s just so painful. That’s the hardest thing. It’s like hell. The pain of depression is so bad that this [hysterectomy] is nothing. It’s just physical pain, I can just take some drugs and it goes! [Depression] is just so strong, and pervades every cell in your body that you can’t forget what it’s like. # 15: BPD-II

Page | 97

I think for me just the day-in, day-out agony is what I can remember. # 9: BPD-I

Being awake was just too unbearable. I couldn’t even just lie in bed because even that was, traumatic. Lying in bed, feeling sick with grief and despair. And my very experience of living is, punishing. Day-today living just grinds away at me and wears me down. # 17: BPD-II

You’ve just got this incredible, physical, lethargic pain. # 2: BPD-II

Emotional Dysregulation Finally, this analysis includes a note on the experience of emotional dysregulation that can occur both during mania, depression and even euthymic periods. Generally speaking, emotional granularity encompasses moods and thoughts, as well as physiological reactions and action tendencies (McKenzie & Crouch, 2004; Power, 2005). Suh et al. (1998) suggest that affect balance (defined as the summed emotional experience of one’s reactions to ongoing events in life”) is a major component of subjective wellbeing and life satisfaction.

Researchers have considered a neurophysiological basis for the emotional instability in bipolar disorder (Green, Cahill & Malhi, 2007), while Greenberg (1996) proposes that the characteristic mood variation signals internal disequilibrium, or hyper-reactivity, that reflects stressful interaction between the organism and the environment. Henry et al. (2003) remark that it is the intensity of emotions, rather than tonality (i.e: euphoric, irritable, dysphoric) that is fundamental to defining mood characteristics of mania. Johnson (2005) found that even when euthymic, individuals with bipolar disorder experienced frequent and intense emotions in response to environmental conditions.

What is significant to this analysis and our deepening understanding of the phenomenology of bipolar disorder however, is the recognition that, apart from the euphoria in early stages of mania, the intensity of mood or emotional instability was a significantly under-reported feature of the illness. Only a few participants touched on the subject of ‘moodiness’ and how it affected their behaviour, or self-other interactions;

Emotions were very intense. If I feel anything, I feel it. There’s no one way or the other. It is or it isn’t. I was feeling things very strong. And, more to the point, my emotions directed my actions. That’s where it becomes dangerous - what I feel- because they subsume my rational mind and I start acting on behest, or the direction or motivation, of those emotions. Feelings have only ever caused me problems. # 20: BPD-II

Emotions motivate us to do all the things in our lives, but when the emotions become extreme, the irritability, the euphoria, the sadness, the depression, all sense of perspective is lost, and I’ll be

Page | 98

completely defeatist or completely furious or completely overjoyed at future prospects and things like that. And I’m well aware that the spectrum of my moods goes to greater extremes than healthy people. # 17: BPD-II

[My boyfriend] will say to me, “In my view, you’ve actually switched today. Like, during the day, I’ve witnessed your personality changing.” Yeah, well, it’s just that you were in a good mood before, and now you’re in a shit mood. You’re just used it, because that’s what bipolar is about. # 14: BPD-II

Summary This chapter analysis highlights that the lows in BPD-I and BPD-II are marked by severe anergic lethargy that profoundly impacts on bodily and cognitive function. The descriptions powerfully demonstrate how depression substantially impedes peoples’ quality of life and ability to control their own motivations, feelings and thoughts. The key features of bipolar depression indicate that the experience is played out in the body, as much as in the mind. Clearly, protracted and untreated episodes risk negatively interfering with the development of positive self-regard.

The next chapter extends the phenomenological focus to the impact that anxiety has, both as an antecedent, and precipitant, of bipolar disorder.

Page | 99

Anxiety: Pathway and Trigger?

Current research suggests high comorbidity of anxiety disorders in bipolar disorder and the content of these accounts supports a strong association (McIntyre et al., 2006; Goldstein & Levitt, 2008; Nakagawa et al., 2008). Anxiety disorders often precede and hasten the onset and, as such, deserve particular attention, as their presence can act as both a pathway, and trigger, to episodes. It is understood that individuals with bipolar disorder exhibit high rates of pre-morbid or trait anxiety and are known to be three to six times more likely to experience anxiety and increased risk prior to first onset. In epidemiological studies, bipolar disorder is shown to be highly comorbid with anxiety disorders (ten Have et al., 2002). The association appears to “confer increased liability” of poor function, further underscoring the importance of early identification and treatment for comorbid conditions (Goldstein & Levitt, 2008: 67). McIntyre et al. (2006) found that the incidence of anxiety was associated with intensification of symptoms, harmful dysfunction (suicidality), and increased rates of non-recovery and substance abuse.

Data analysis indicates that anxiety was a persistent feature for the participants in this sample, occurring both during, and between, bipolar episodes. These findings thus challenge the commonly accepted notion that highs as intrinsically ‘care-free zones’. There are clearly different forms of anxiety that occur (i.e: antecedent, precedent, coexisting, future-oriented) and thus the necessity for identifying the source of an individual’s anxiety is emphasized in order to tailor successful interventions. The difference between pre-morbid/trait anxiety, and state anxiety (where anxiety worsens with emerging depression) also needs to be clarified.

The impact of anxiety is often overlooked in bipolar disorder due to the depth of dysfunction caused by mania and depression. However, it is evident from these narratives that persistent, low-level anxiety significantly disturbs daily functioning and has a negative impact on quality of life. This reality underscores the need for the prioritisation of the identification and management of anxiety symptomatology in bipolar disorder (McIntyre et al., 2006). The experience of anxiety can be as problematic and disruptive as distinct episodes of depression or mania. The presence of anxiety is a powerful trigger to worsening episodes. Learning to reduce anxiety is a vital aspect of optimal control of bipolar disorder.

Page | 100

In this chapter, the specific physiological and cognitive aspects of anxiety will be investigated with a focus on specific anxieties relating to childhood experiences, stress and the fear and apprehension of future relapse, as well the role of anxiety in the incidence of comorbid eating disorders.

Physiology of Anxiety One of the main aspects that surfaces within the participants’ accounts concerns the physiology of the anxious state. Anxiety in bipolar disorder is experienced as something phenomenologically distinct from depression and low mood; individuals could readily differentiate between the states, describing very different sensations and feelings for anxiety.

The role anxiety plays in the broader pattern of illness were astutely recognised by one individual;

I think that anxiety is one of the real physiological symptoms of bipolar that underlies all the symptomatic behaviours of bipolar disorder. It’s like a first generation symptom. Bipolar is actually the feelings in your body that drive all the crazy behaviours, so anxiety is a huge one. Because you can’t have the highs, without nervous energy, and that’s really anxiety. Your hands are sweaty, your heart’s racing a little bit more. So it’s a huge component. # 2: BPD-I

Anxiety is most commonly experienced as a churning nausea and appears to be specifically located in the body at the gut level;

I get terrible anxiety, but it’s like a gut feeling of anxiety, you can physically feel it. # 10: BPD-I

I was also having anxiety attacks, waking up nauseous. Literally, within seconds of waking up, the nausea would come on like a switch, a sort of burning, sick feeling in my stomach and my face and just a general feeling of just everything being wrong and not being able to work my way around it. # 17: BPD-II

There’s a physical sensation of churning and feeling really stressed. # 16: BPD-II

Other physical symptoms of anxiety are described as shaking, sweating, racing heart and muscle tightness;

Anxiety is a physical thing for me. It’s like the fight-or-flight response, I get the butterflies, my thinking narrows, and my vision narrows, everything. # 21: BPD-II

Sweat would be just dripping off. I’d be shaking and stuff...a bumbling, stumbling, shaking idiot. # 13: BPD-II

The anxiety comes in for me as I’m heading into the depression. I get the shakes. And then the absolute exhaustion where you are actually bedridden probably comes last. # 12: BPD-II

Page | 101

The intrusiveness of the physical aspects of anxious symptomatology is vividly exemplified by two participants in particular - one who experienced such a feeling of obstruction in her throat, she had to consult a specialist, the other whose anxiety manifested in severe eczema that made it very difficult to go about daily life;

Sometimes my voice sounds different when I’m anxious, cause it’s all here [points to throat]. I even went to a specialist once, I thought there was a lump there, but there’s not, that’s just where my anxiety is. # 15: BPD-II

I have a history of eczema but it became so bad that my fingers and arms were just scabby, all the way up and down. I had one just massive scab and I would scratch my scalp and there were mornings when I woke up and there would be a dinner plate sized pool of dried blood on my pillow. The eczema does flair up when I’m stressed and I’d have sores in between all my fingers, my wrists, back of the elbows, knees, scalp, everywhere. # 17: BPD-II

The consequences of anxiety, while perhaps not as clinically severe as specific episodes of depression and mania, nonetheless prove very disruptive in terms of daily functioning. High levels of anxiety negatively impact on quality of life, greatly restricting the individual’s sense of control and ease in their lives;

For me, it was just a whole combination of things, like, I couldn’t do the shopping. I’d drive into the shopping centre and I’d drive out because I knew I couldn’t face the noise, the people. I felt like if I went in there, I would freak out! So it was a feeling of not being able to cope with doing things like that. # 5: BPD-II

I used to have to have a drink before any social engagement, because if I had to put my hand out to shake your hand, ohhh, it was horrific. It was like someone was about to kill me! That’s the amount of fear I had. # 21: BPD-II

These quotes show a key feature of anxiety in bipolar disorder apprehension and fear that creates a disturbing sense of unease.

To live with such sensations of discomfort is very draining and can prove debilitating in the extremes when it starts to become unmanageable or obsessional, as illustrated in the following accounts;

Yesterday, I was worried about everything, worried that I wouldn’t get up and get dressed. I get worried that I’m not going to be at places where I’ve got to be in time. Hence I’m usually there half an hour earlier. I’m absolutely terrified of doing the wrong thing. And it’s because the illness is so intangible. # 3: BPD-I

Page | 102

I’ve always, always had anxiety. Like, if I thought I’d done something bad, I’d worry about it. Or if I thought I’d said something wrong to someone, I’d worry about it. I am the sort of person who is a very intense worrier. I worry about everything. # 6: BPD-I

Childhood Anxiety For most participants, disruptive feelings of anxiety and insecurity first surfaced during childhood. Many experiences of this early anxiety were related to dysfunctional family circumstances;

I was a very sad child. I can just remember all the sad things about being a child. I remember Mum and Dad arguing. And I was always sad to leave Mum to go to school and I’d cry and I was shy. All those kind of characteristics of initial stages of anxiety. I was very serious, always had the world on my shoulders. They were all initial signs, weren’t they? # 12: BPD-II

For many of the participants interviewed, the level of anxiety experienced in the early years is powerful enough to leave an enduring negative imprint of their childhood memories. Some individuals consider that their early experiences of insecurity and fear were the catalyst for creating an enduring vulnerability, that predisposed them to bipolar disorder;

I remember being anxious all the time. I’m so convinced that an early childhood has to be calm and loving and consistent, because in those first few years, I think that’s what holds you in steed for the rest of your life. You can’t get it back, I just don’t think you can. And with self-esteem and all those issues, it’s very hard to get it later on, if you don’t have it then. # 15: BPD-II

Massive fears, all these fears ruled my life. I was a fearful kid. # 21: BPD-II

However, early manifestations of anxious symtomatology may have also been related to physiological changes that signalled the onset of the bipolar illness. Nonetheless, regardless of the cause, the consequences of experiencing such persistent and fearful anxiety as a child can have an enduring impact on the stability of one’s self-concept, as evidenced by the following;

At the age of 14, when I was experiencing some really bad episodes [and] felt paranoid and anxious, my core belief would have been, “The world’s a scary place”. Also, to feel paranoid and anxious all the time, you don’t really build up a core belief that you are confident. So one of my core beliefs was that, “I am weak”, because I felt weak all the time. So yeah, my body affected my core beliefs directly. # 2: BPD-I

Some individuals believed a resilient level of self-esteem never developed due to negative circumstances during childhood, such as bullying or parental neglect;

I think I left High School a boy, not a man, because I was beaten down and had no confidence at that point, and then I just moved from disaster to disaster, for whatever reason. I never really came of age

Page | 103

because my confidence, my manliness was never really nurtured, never allowed to develop. I feel like a joke, and I guess that blow to my self-esteem has been so pervasive and enduring, because the difficulties in my height occurred, during those formative years of puberty. Just as a budding…man, I felt absurd. So my self-esteem really took a hit there. # 17: BPD-II

I used anything that would change the way I felt. And a lot of it was about I didn’t like who I was. Because I didn’t like myself. And in the end I hated myself. Little things like, I never brushed my teeth or shaved in front of the mirror, I did it in the shower. I couldn’t look myself in the mirror, and I never, ever did. Probably 15 years, I’ve never looked in mirrors, I hated mirrors, hated my reflection. It was that self-loathing. # 21: BPD-II

Thus, when the complications of bipolar disorder emerge, individuals often feel they are already considerably ill-equipped to deal with the ongoing assault to their sense of self the illness inflicts.

Analytic focus now turns to an investigation of the family environment, specifically the impact of emotional distance, family conflict, limited communication, lax regulation, marital discord and parental alcoholism on the development of bipolar disorder.

Impact of a Negative Family Environment In the past decade there has been growing interest in the environmental influences associated with an increased risk for developing bipolar disorder (Berretini, 2000). While there is no question that bipolar disorder is strongly heritable (Johnson & Carver, 2006), it is nonetheless understood that there are various predisposing and precipitating factors to the onset of bipolar disorder aside from genetic vulnerability. Certain elements in the family environment are known to be reliable predictors of depression, namely the impoverished quality of parent-child relationships, family conflict and parental over-control (Belardinelli et al., 2008). Factors such as family conflict, parental depressive disorder, marital discord, parental criticism or hostility (referred to as ‘expressed emotion’), insecure attachments, parental loss and levels of parental care have been implicated in the precipitation of bipolar disorder (Phillips et al., 2007). While at this stage there is lack of consensus on the precise mechanisms and impact of the familial environment, questions are being raised as to the importance of environmental pathways interacting with biology to increase likelihood of transition to illness (Jones & Bentall, 2008).

It is known that a stressful, negative, abusive or depriving environment can impede healthy psychological development (Brune & Brune-Cohrs, 2006). In the specific context of bipolar disorder, Power (2005) suggests that discordant childhood experiences lead to dysfunctional cognitive schema that centres on the need to be loved or achieve, any threats to which can trigger escalation to

Page | 104

negative mood. Miklowitz et al. (2005: 101) found that a significant proportion of symptomatology in bipolar disorder patients can be attributed to psychosocial stressors, such as the experience of stressful life events, low levels of social support and high levels of expressed emotion within the family. ‘Expressed emotion’ is typically measured in terms of criticism, hostility or emotional over- involvement and, according to this research, individuals whose family had high levels of ‘expressed emotion’ are at significantly greater risk of relapse. The authors suggest that the family’s ‘emotional climate’ may have prognostic value by demonstrating “...that emotional reactions to criticisms from relatives contribute to liability to more severe course of illness...” (Miklowitz et al. 2005: 107)

Similarly, Ramana & Bebbington (1995) found that an adverse family atmosphere is associated with a greater tendency to relapse. This finding was also supported by Bower (2000: 232), who showed that risk of relapse is high for individuals who encounter a lot of daily stress following their release from hospital and that “[l]iving with a hostile, critical family ranks high among such strains.”

A study by Jones & Bentall (2008) reviewed potential cognitive and environmental risk markers in children of bipolar parents in order to identify the key factors that might predict transition to illness. While the evidence of the extent to which dysfunctional family dynamics are involved in onset is inconsistent, the authors maintain that it is crucial to identify the psychological factors and pathways associated with gene-environment transmission if preventative measures are to be developed.

Belardinelli et al. (2008) examined the family environment of children with bipolar disorder and found that parents reported lower levels of family cohesion and higher levels of conflict compared to parents with no bipolar children. Thus, as hypothesised, the families of children with bipolar disorder demonstrated greater dysfunctional patterns. Research thus supports taking the family context into account during therapeutic interventions.

Investigation of family functioning is therefore important for identifying both risk and protective factors. A positive family environment, where expressions of warmth and caring are constant, is thought to contribute to the development of ‘theory of mind’ abilities in children. ‘Theory of mind’ refers to the ability to comprehend other peoples’ mental states and emotions and to respond appropriately in social situations (Brune & Brune-Cohrs, 2006). As Olley et al. (2005: 327) demonstrate, it is an important area to study as “...the ability to recognise and attribute thoughts and feelings to other people underpins ...successful social functioning.” Few studies have specifically examined the theory of mind abilities in bipolar disorder. Further research into the association between family dysfunction and bipolar disorder is thus warranted and is certainly supported by the content of participants’ narratives.

Page | 105

A considerable proportion of participants’ narratives were devoted to discussion of family life, particularly focusing on the quality of parental relationships. This theme thus emerges as a significant one. Data analysis indicates that many participants experienced low parental warmth and attachment and few positive role models. The family environment was perceived as chaotic and stressful, where open communication was not encouraged and emotional support limited. All these factors may contribute to the development of impaired self-esteem and generalised anxiety, feelings of instability, and negative cognitive styles and coping skills, which may prove a problematic mix for those children genetically at risk for developing bipolar disorder.

For some individuals, symptoms manifest in early childhood and, in these instances, parents are typically unaware of bipolar disorder and often wrongly misinterpret the disruptive behaviours and emotions exhibited as issues of personality or obedience. Given the disruption undiagnosed symptoms can cause, the family is bound to experience heightened stress, with the problematic situation addressed as an issue of discipline, rather than illness management. It is understandable that any child dealing with the distress of bipolar disorder at a young age will be difficult to manage, but if they do not receive adequate understanding and support at such a vulnerable time, there is a risk they will receive negative feedback from parents which can damage the development of healthy self-esteem, as illustrated in the following account;

I’d get negative feedback from Dad growing up. So that affected me quite badly, emotionally. But Dad didn’t know any better. He didn’t know how to deal with me. I would have been a pain in the arse when I was a kid. Seriously. So, I could understand it would have been really difficult having seen the behaviours coming out in me as a little kid. I think it would have been very hard for him. He wouldn’t have known how to handle it. He thought he was doing the right thing by disciplining me. He just wasn’t very wise about emotional development in young children, that kind of thing. # 2: BPD-I

To experience the agitation of highs and lows at an early age often leads to confusing behaviour marked by emotionality and over-reactions that are often perceived as disruptive and troublesome temper tantrums. In this way, a child’s behaviour can be negatively labelled from an early age, thus setting up patterns and expectations that may become internalised;

My Mum was full of resentment because her parents were chronic alcoholics. So her dreams and aspirations and her life when out the window. She had the resentment, the anger, the poor me, the self-pity. And I think I reminded her a lot of her father. If there was something knocked over in the house, my Mum made a bee-line for me. And after awhile I had that nothing to lose attitude, “Well, they’re going to blame me anyway, I’ll go out in a blaze of glory”. And I really was a naughty child. I was disconnected. She used to belt me. # 21: BPD-II

Page | 106

Limited Communication Analysis also reveals that the emotional climate of participants’ families is characterised by limited communication. This lack of emotional expression has specific implications for any family that has a history of mental illness. By not openly discussing the heritable risks, individuals are denied the opportunity to learn about the illness, recognise warning signs and practice early intervention;

There wasn’t also a lot of good communication. There just wasn’t that opportunity. It wasn’t encouraged. We weren’t really encouraged to express our feelings. If I think back to how I felt, I was so insecure. That anxiety, insecurity, which maybe predisposes you to these [episodes]. There really wasn’t anyone that I could talk to that understood. # 7: BPD-II

Nothing was spoken about. Everything was shoved under the carpet. # 19: BPD-I

I was brought up in a household where I was to be seen and not heard, unless I was spoken to. If I mucked up I could expect the back of the hand, real quick, and things like that. There’s not much banter like that in our house! There wasn’t much emotion or things like, “How’re you goin’?” # 13: BPD-II

My mother is a person who’s got fairly stunted emotional expression, she loves us all dearly, but she’s not a touchy-feely kind of person. I hardly saw much of her. # 16: BPD-I

Because depression in our family, anything psychological, is like a no-no. Complete denial of it. No- one ever talks about anything. I grew up on a farm, all you do is work on the farm, you don’t talk, you don’t have deficiencies when you grow up on a farm. # 5: BPD-II

Low Parental Involvement In addition to experiencing high family conflict and low emotional support and expression, many individuals were also raised in an environment that lacked strong boundaries and parental control;

My parents were always really laissez-faire, you know? # 2: BPD-I

I was the wild one. We were allowed our freedom. Mum used to say, “Just give her enough rope and hope she doesn’t hang herself. Let her do what she needs to do. If she just wants to go out and drink and party and meet guys, just let her do it”. I was always the naughty one. # 11: BPD-I

People were scared of me. My Mum and Dad wouldn’t dare say anything. Because, I had such a bite to me, if I was the monster, nobody would want to get on the wrong side of the monster. I can see the fear in my sister’s eyes when I have it. And it feeds it. Nobody would dare cross me, or try and tell me what to do when I had the monster. And I actually felt empowered by those moods, because everybody would be scared. And I would get what I want, when I was in a mood. # 12: BPD-II

Page | 107

I don’t think [my parents] really took much interest really. I mean Dad didn’t know what year I was in, I’m sure [laughs]. And Mum didn’t help us with our homework, because she was too busy, you know, surviving. # 15: BPD-II

Well, [my parents] didn’t say anything to me, as long as the kids were home for tea and ate their vegetables, you know, it was a different era back then. Like, we were at the beach by ourselves when we were 5 years old. # 18: BPD-II

Such lenient or disinterested parental styles may be a significant factor in the evolution of bipolar disorder. It is possible that growing up in a permissive climate, where there are no consequences for actions, may be related to the problems in regulation of behaviour in later life.

Emotional Distance One theme common to the majority of participants was the experience of a negative relationship with at least one parent, in particular emotional distance from the father and the level of hurt experienced as a result of dysfunctional childhood was still apparent during interviews;

He recently said, ‘I was a shocking father, you had a shocking childhood, sorry’. But I don’t want to get into it with him, like, it hurts too much. # 15: BPD-II

It appears that the upbringing of individuals who go on to develop bipolar disorder is marked by emotional distance, chaotic interaction, limited emotional support and low levels of parental monitoring and guidance. While it is not argued that problematic parental relationships cause the onset of bipolar disorder, the subject was discussed with such depth and consistency it emerges as a likely relevant factor and thus warrants further examination;

Basically, we were very poor. My Dad played up on my Mum and she left him and it was awful. They got back together just before I was born, and then they didn’t have any money and Dad was involved in a lot of criminal activity and was sent to jail, for two years. And they had no money. No money for food and things like that. So we had to rely on the corner-shop with those, what’s it called, where you pay later? We had police come to our house, with guns, looking for our Dad and I was there for all of that. # 15: BPD-II

Participants felt that growing up in an unstable and tense home environment with a parent providing a negative role model has had an enduring negative effect, particularly in terms of creating high anxiety and low self-esteem. A childhood that is dominated by fear, uncertainty, conflict and violence does have implications on healthy development. Individuals spoke about ‘gestation’, ‘kindling’ and ‘triggers’ of their illness in this context.

Page | 108

Plus there were a lot of fights, and I was always, always sort of, on edge, ready, and I’ve always blamed that for the manic side, why I can’t, I’m always either excitable, or depressed. I thought that was something to do with it, perhaps it is, I don’t know. # 15: BPD-II

You know, I was taught: men don’t cry, men go to work, men go to the Pub, and all that sort of stuff. # 21: BPD-II

Participants also discussed the stress of their childhood in terms of the emotional abuse and parental criticism they were exposed to;

I used to be so nervous talking to my Dad, because he used to put me down. He used to call me dummy and he’s quite sexist actually, and he used to make me feel really dumb. Dad was quite cruel. # 15: BPD-II

I was a really hyper-sensitive child and I lived in a family where, on the outside it all looked great, but for me – well, there was physical violence, but there was a lot of, you know, you were put down a lot…whacked over the back of the head and called a mongrel. # 21: BPD-II

[Dad] has days when he’s downright abrasive and insulting to everything you say. He became quite emotionally abusive, in my adolescent years. He went through a phase where he used to call me a dickhead and think it was funny and you know, coming from your father... But I mean, when you’re a kid, you just accept your parents’ behaviour as normal. But in retrospect I’ve realised how unpleasant he wash. He’s also constantly critical of life choices that I make. I’m always afraid to let him know what I’m thinking about what I want to do with my life because he’ll always knock it down. # 17: BPD- II

Many participants also acknowledged a marked level of emotional distance or neglect that was troubling to them growing up;

Basically, as a child, and as a young adult, and as an adolescent there was an element of neglect. [M]y parents sent me to Boarding School and I hardly ever saw them again. They just didn’t have any contact, or care. I suppose my emotional needs were never really met, as such. # 5: BPD-II

It was pretty hard to get some time from [Dad], cause he was always busy doing his own thing. You can’t have a very deep or meaningful conversation with him, he likes to talk about himself all the time. He’s a very selfish man. I don’t particularly like him that much. I hardly have much to do with him. It’s really not that relationship. # 11: BPD-I

My father was a very traditional 1950’s man, went to work, came home, had his scotch, had his dinner, watched the ABC news for an hour, talked about his day. Not very expressive emotionally. # 16: BPD-I

Page | 109

I’d never backchat my Dad and say “No” or anything like that. And if I did, I knew what was comin’. Got slapped about the head a lot [laughs] by the old man. But he’s still hard on me. I grew up in a household where, you know, my Dad probably didn’t tell me he loved me until I think, I got married, when I was 27. It was, ‘I’m proud of ya mate, I love ya!’ Give ma pat on the back and that would be it. # 13: BPD-II

He’d be in his pyjamas in bed, you know, went into another room and yeah, have his TV, go in there with his bottle and that was it, sort of thing. # 18: BPD-II

I think the environment I lived in was dysfunctional. I never saw my father because he was always at work. My father was never there. He didn’t have to be around the mayhem at home because he had the excuse of going to work. We were low middle class but we tried to look upper middle class, we were sent to private schools because they wanted us to have these great educations. And by doing that, we went without all the other stuff and ah. For me, it was chaotic. # 21: BPD-II

Future studies may be needed to determine the degree to which the impairment in family functioning is “...a consequence of the bipolar parent who may model inappropriate coping skills and fail to develop appropriate parental skills” (Belardinelli et al., 2008:303), a reaction to bipolar disorder and its preceding states in the child, or reflect other pathways.

Father’s Alcoholism Many individuals describe a dysfunctional, stressful and chaotic family environment, recalling many traumatic memories that were, most notably, a result of the fathers’ alcoholism;

When I look back on my background, on my growing up …when it was dysfunctional. I think my father - although it was never really discussed - he was an alcoholic, and I think he was depressed. # 7: BPD-I

My Dad was an alcoholic. Dad never worked. He had a couple of his own little projects, like he had a farm for a while and he had some business, but basically, the whole time he was a criminal. He stole things and sold them at the pub every day. Dad would come home every night, late, drunk, sometimes argumentative. # 15: BPD-II

My father was a melancholy alcoholic. When he was good, he was very, very good, but when he was bad he was horrid. # 19: BPD-I

My father, he was a chronic alcoholic. He was a full-on alcoholic, you know. I’d go round lookin’ for him [after work], you’d go to a particular pub that opened at 8 in the morning and there he is, sittin’ on the doorstep, you know. He used to get violent when he’d come home drunk and all that. With my mother and with us. You used to fear it when he was coming home. He was angry a lot. # 18: BPD-II

Page | 110

It is evident that a parent consumed by alcoholism would provide reduced emotional support or nurturing to their family. In addition, their behaviour provides a negative example of coping behaviours that may be later assimilated by the child.

Given the tumultuous nature of addiction and abuse, it is not surprising that marital discord is high and children are caught in the middle of the turmoil, often times feeling responsible to protect their mother from their father’s actions. Many individuals were estranged from their fathers, as a result of divorce or outright abandonment;

Oh, I worshipped my father, but he walked out of our lives when I was 11 and he never said goodbye and I’ve never seen him since. That was awful, I was starting high school. He caused merry hell. # 6: BPD-I

When we were babies, Dad had a problem with alcohol. Mum and Dad would fight a lot and Dad would always leave. And I always thought he was leaving us, forever, as a little girl. So I would try everything in my power, “Don’t get a divorce, please don’t leave, Mummy don’t get a divorce, be good to Daddy, ple-ease.” And I would always watch what I said, so that Daddy didn’t leave. I would always make sure that I was a good girl, so Daddy didn’t leave. I was taught, at some stage, to visualize me holding my Mummy’s leg and Dad walking out and yelling, “Don’t go, don’t go”. # 12: BPD-II

This particular young man goes on to highlight how difficult it is to repair a parental relationship after years of distance and lack of support. What is particularly interesting about this case is the suggestion that a lack of male authority or impaired father-child relationship may relate to ongoing problems with respecting authority in adulthood;

Anyway, [Dad] came back only really recently. And he was pretty much a stranger. He’d missed puberty and adolescence and so he really came in and tried to make amends, you know... Problem is I’d learnt how to deal without a father figure. [W]hen he came back and was trying to make amends, he really tried to establish a fatherhood thing. Which, you know, a father’s authority develops over years of action. You can’t just come back and have authority. Doesn’t work like that...Maybe because he left, I have no respect for authority whatsoever…Take your phallis and go away! # 20: BPD-II

This level of parental detachment and remoteness inevitably has consequences on the development of a child. What is particularly noteworthy about the above excerpts is that five of these individuals (#11, #12, #13, # 18, #21) went on to have serious problems with drugs and/or alcohol. This raises an interesting question as to the importance and role of emotional involvement of the father on a child at genetic risk of bipolar disorder. This leads to consideration of what it is that children seek from a father figure and how impairment or loss in this relationship might impact on reinforcing the

Page | 111 biological pathway to illness. Some appear to look to their fathers to provide a sense of protection and security, and felt they played a vital role in instilling self-belief and reinforcing identity;

I’ve had to realise that I blamed my Dad, for feeling the way that I did for all my life. I thought it was cause he wasn’t a good enough father, he was making me feel bad, because he didn’t love me enough, or hadn’t instilled confidence in me. But actually, a lot of it was my disorder. So I was very hateful towards him, growing up. I used to really put him down a lot, and tell him he wasn’t a good father and he was all these horrible things. We’ve mended our relationship a lot, and I do realise now that another person can’t make you happy in that way. It was my bipolar that stopped me gaining an identity ... because everything turned murky because of that. And I thought it was his job to do it for me. I didn’t realise that you find your own identity, if you’re emotionally healthy person, you find your own identity as you grow up. I really thought it was my Dad’s job to give it to me. # 2: BPD-I

Deep down, I never thought my Dad would save me, or anything like that. # 15: BPD-II

The discomfort and emptiness children can feel as a result of not having a positive relationship with their father is powerfully illustrated by the following story, where one female is drawn to religion in search of this fatherly sense of love and protection;

When I was 16 I went to an Evangelical Service and they said in the sermon, “If you believe that you want Jesus to be your personal saviour, to help you for the rest of your life, no matter for good or bad, he’ll be there with you. If you want him as a personal saviour, come forward”. So I went forward and I said to God [whispers], “At long last I have a father who loves me.” # 19: BPD-I

Positive Relationship with Mother However, in most cases, the angst that characterised many of the father-child relationships in this particular sample was often countered by positive relationship individuals had with their mothers;

My Mum, she’s a rock that woman. She’s just an amazing woman. Like, she is just relentless in her giving. It was my Mum that kept me going. # 8: BPD-I

The interesting thing about Mum is she’s just so non-judgmental and sort of comes in and says, “Oh, that’s nice” and sort of just listens. You can tell her anything. # 10: BPD-I

She’s pretty good. She loves me for who I am. She cares for me. She’s a great support, my mother, she’s always had plenty of time for me and my children. # 11: BPD-I

She was very good to us, she’d always put us first. She’d go without so we could have a good life. # 16: BPD-I

My Mum’s a gem. She’s the best Mum. I’ve got a really good relationship with my Mum. Always been there for the kids and stuff like that. # 13: BPD-II

Page | 112

She was a very anxious mother, never just sat down and [enjoyed us]. I mean, it was survival for her. She ended up having to work to put us through school and things. She was determined that we went to a Catholic school. She fed us and clothed us and went to work and cleaned toilets so that we could go to a Catholic school, and even though she was anxious all the time, we could see that she loved us, you know. So much. The love’s just been there the whole time, so I’m very lucky. # 15: BPD-II

I mean my Mum, she’s my best friend and I don’t know what I’d do without her. She’ll always listen, she’ll always be there for a hug, or a place to stay if I need to get away from my own place. She’s great. I aspire to be like her and I’ll never quite be like her, because I’ve got too much of my Dad in me. # 17: BPD-II

I probably worry about losing my Mum, because she’s my rock and she’s just been there through everything, through drinking too much, it didn’t matter what I did, my Mum was there. She’s helped me move so many times and so many times she would help me out with my financial situation, so many times. I’m still a little girl with her. She still treats me like a little girl. I’ve never grown up in her eyes, I’ve always needed her. She Mummies me and she talks to me like I’m still in primary school. I feel really safe. I love her so much. # 12: BPD-II

In one case, it was the father who provided emotional security and offset the chaos of growing up with a mother dealing with the chaos of untreated illness;

I think my mother was bipolar. She was violent. She was a very difficult person. My brother and I had a pretty rough time. She had extraordinary mood swings. But my father stuck by her. Thank god [Dad] didn’t [leave] because I loved my father. He was rock solid and absolutely wonderful. He was the reason my childhood was so good. # 3: BPD-I

Despite having a less-than-ideal upbringing, however, some individuals were able to put the difficulties they experienced as children into perspective by acknowledging that their parents’ limitations were not intentional;

I don’t blame my parents, I don’t think it was their fault. You know, they had problems, but they didn’t set out to be malicious or anything like that. # 15: BPD-II

I’m not dirty, it’s not my parents’ fault, they did what they did with the skills they had. They came from a different era. # 21: BPD-II

Dad does his best. He loves us and he does his best, but he has an illness that he’s not getting treated for, which is really sad, but I have to take a step back from that I think, because that’s probably where my anxieties were created. # 12: BPD-II

Page | 113

Illness-Related Anxiety A key component of the anxiety that develops in people with bipolar disorder also relates directly to the illness itself. The inherent unpredictability of the episodes created a pervasive sense of apprehension for most participants. Heightened anxiety revolved around the uncontrollability of one’s behaviour, mood or reactions, lost confidence in abilities, lack of certainty in knowing what is going to happen, or when, and having to handle the constant awareness of difference;

I think actually being bipolar has made me less adventurous and made me a much more frightened and anxious person actually. There’s just a lot of angst around it and anxiety and things that I’d normally feel good about or confident about, I don’t. It’s embarrassing to feel that you can’t control your mood, that you can’t control yourself in situations. [Having to do certain things] is an extremely anxiety-ridden experience, because I’ll spend half the time leading up to it worrying that I’m just going to be a fucking mess and how am I going to cope. # 14: BPD-II

I started getting panic attacks where I just felt completely ill at ease. I just didn’t want to go back to work. I was feeling tense all the time, because you just don’t know what’s going on. # 10: BPD-I

On the whole, the narratives reveal that the most anguishing aspect of living with bipolar disorder is related to what can be termed ‘future-oriented worry’. This type of forward-rumination is typical of most chronic illnesses but it is one that appears to generate the most intense episodes of anxiety in those with bipolar disorder. Naturally, when a person’s reality and identity is so dramatically challenged under conditions of long-term illness, their sense of ‘future-self’ is also altered. In terms of bipolar disorder specifically, it is the unpredictability of symptoms and episodes that make it very difficult for individuals to plan in all aspects of their life - work, family, relationships, social, etc.;

It’s only when I start living in tomorrow, or worrying about what’s going to happen, that’s when the fear builds up. Thinking narrows, the anxiety builds up. # 21: BPD-II

I think a major part of this illness is you just have this huge uncertainty. You just don’t know what it’s going to be like for your future. It’s a changeable sort of illness. Maybe I’ll have a relapse that’s really comes out of nowhere, that is worse. You know? Maybe I will have to quit a job in the future because of it? # 9: BPD-I

I get very anxious about getting sick again. So it’s not kind of ‘why me’, but it’s sort of fear of the future in a way. Because I’m so terrified of the consequences of getting sick again, the consequences in terms of behaviour, consequences in terms of cognitive deficits, consequences in terms of relationship break-ups and things like that. I’m really vigilant. Really vigilant. I think I’ve got a lot of anxiety as a result and so it’s like you’re on the edge, or on the verge, a lot. And you can’t fix it, so you just have to recognise it and then be prepared to do something about it. # 16: BPD-I

Page | 114

Now I’m worried about my illness in other ways. Like having a baby and stuff like that. # 14: BPD-II

Stress and Anxiety Another theme to emerge was the relationship between anxiety, stress and the pressure to achieve. Data analysis suggested that people with bipolar disorder are particularly sensitive to their environment and external triggers, especially in a context where merit can be judged. This finding suggests an underlying fear of failure that can prove destabilising depending on which stage in the bipolar cycle the individual is experiencing. This association is worthy of further attention, as it may shed light on causes of the cognitive distortions that lead to anxiety and highlight an fruitful area of intervention or treatment. This analysis also shows that anxiety in bipolar disorder is not only physiological, but can also be triggered by external events, such as stress, or worry over performance;

I trained really hard in athletics and I used to get Dux of the school every other year. And then I started putting so much pressure on myself, and I started getting anxiety bad before exams, I’d get so nervous, I’d take it so seriously. I was 14! It was ridiculous. And in the end, I gave up. I gave up. And that was it. I didn’t care anymore. The anxiety was out of control. # 12: BPD-II

When I’ve got too much work, because I’m conscientious, I get very anxious. I just worry. # 15: BPD-II

Exams and things like that, I’d be beside myself. And knowing full well that I hadn’t put in the work that I should have. I was just freaking out. It depends on where you are in the crazy cycle, as to how you dealt with things. # 13: BPD-II

A deeper understanding of the role anxiety plays in triggering episodes of bipolar disorder is therefore vital to garner greater control of the illness. Some participants who had learnt to recognise that increasing anxiety was a valid indicator of ensuing depression;

I know anxiety’s not good to have for a long time, because that can tip into depression as well. I can lower it a bit, with exercise and meditation, but when it’s really bad, it’s awful. Shocking. # 15: BPD-II

The anxiety comes in, for me, as I’m heading into the depression. I get the shakes. And then the anxiety and then the absolute exhaustion where you are actually bedridden probably comes last. # 12: BPD-II

This recognition is important, as it indicates a point where individuals may be able to affect an intervention that successfully averts, or at least reduces the severity of depressive episodes, which is essential in building a sense of mastery over the illness.

Page | 115

Eating Disorders It is of interest to examine the accounts shared by two females with BPD-II who spoke at length about their experiences with eating disorders. The behaviour is deeply intertwined with the chaotic course of bipolar disorder and appears to have flourished as a way of coping with extreme anxiety. Interestingly, research has also uncovered a specific association between bulimia nervosa and bipolar II disorder (Lunde et al., 2009). It is hypothesized to involve disturbance in behavioural activation system affecting impulsivity and compulsivity, but the precise underpinnings of the relationship are not well understood and need further elaboration.

For one participant, her weight constantly fluctuated with the cycle of illness and the efforts to maintain a stable weight eventually led to an eating disorder;

I’ve had an eating disorder …that was exacerbated by this condition. I think that’s something that’s made it very hard, personally, for me to cope with the illness, with the weight going up and down, just ‘cause I was a self-conscious teenager. # 14: BPD-II

For the other participant, it was the act of over-eating and purging that actually allayed the physical sensations of anxiety;

The anxiety would make me over-eat, and then make myself sick. It was happening quite young, but I covered it up. I camouflaged it [the anxiety] by either eating and throwing up and drinking. You eat to relieve that, and for just a few minutes of the day, the catastrophic problem that’s happening in your life, for that moment, goes away. And you will do anything for that, even eat and stick your fingers down your throat. It’s really heightened anxiety. Really, you can’t stand it and you have to do something to stop it. I would obsessively eat and throw up, to relieve anxiety. # 12: PD-II

What is particularly interesting about this case is that this individual, who described herself as an “extreme bulimic” for over a decade, was able to completely cease her distorted eating pattern immediately after commencing medication for depression;

It’s really funny, I didn’t get help for my bulimia. And I was so addicted to it. So addicted. It’s a miracle I didn’t kill myself. But I don’t know how.... Oh, I think I started the Cipramil and I think that eased my anxiety. You know what? I woke up one morning and [snaps fingers], I don’t remember ever stopping. I didn’t ease it off, I didn’t go and get help, I just, all of sudden - I just wasn’t bulimic anymore. # 12: BPD-II

Summary This analysis has highlighted the importance of attending to the phenomenon of anxiety disorder comorbidity in the management of bipolar disorder. Individuals are susceptible to disturbing

Page | 116 physiological and cognitive features of anxiety that significantly impact on wellbeing and daily function. Specific origins for anxiety need to be clarified if effective treatment interventions are to be established.

This exploratory analysis points to an association between parental distance and high conflict family environment and the ensuing development of bipolar disorder. In considering the implications of this relationship, several possibilities need to be taken into account; i) that bipolar disorder in a parent made them dysfunctional; ii) that poor parenting may be in response to ‘difficult’ behaviour in a child exhibiting early signs of bipolar disorder; or that iii) that dysfunctional parenting is an independent variable, and iv) an iterative model. Further studies are needed to examine the implications of this relationship, and the impact of unstable environments on children with a genetic vulnerability to bipolar disorder. In terms of therapeutic intervention and management, the relevance of family focused therapy is therefore underscored.

In the following section, the focus shifts to examine the impact of diagnosis, identity and positive and negative experiences of medication and health care professionals. The impact of stress and the pressure to achieve briefly touched in this chapter will be considered in more detail in Part Four on elevated goal-setting tendencies in the bipolar disorder individual.

Page | 117

PART THREE Impact of Diagnosis

Page | 118

Issues Related to Diagnosis

An important facet of this thesis is to understand how individuals diagnosed with bipolar disorder make sense of their illness and learn to cope with it over time. This chapter will explore in-depth individuals’ path and reactions to diagnosis and the process of adaptation. Analysis will substantiate the fact that a diagnosis of bipolar is experienced as a “phenomenon of consequence” and requires further investigation (Hayne, 2003). Hayne (2003: 723) explored how individuals experienced psychiatric diagnosis and found that the “...diagnostic label becomes a transforming influence to actually shape present and future life expectations...” Pierce (2004: 407) found that a diagnosis can be a “devastating occurrence” causing individuals to re-adjust their own personhood. For others, a diagnosis can clarify a history of problems and generates hope that disruptive symptoms can be treated.

As previously illustrated in Part One, it takes time for individuals to conceptualise symptoms of their distress from a ‘phase’ to an illness. While, in general, there is a different pathway to diagnosis, depending on whether there is a gradual or sudden onset, typically help is sought when individuals cannot help themselves and are in crisis. It is also known that there is a high correlation between poor medication adherence and low levels of acceptance of the diagnosis (Ball et al 2003). Research by Biddle et al. (2007) shows that diagnosis may be further complicated by strategies of normalisation and emphasising the need to conceputalise help-seeking behaviour as a circular process that involves repeated negotiation of meaning. This analysis will demonstrate that there is a “…considerable gap between lay and clinical understandings of where along the continuum of distress the threshold for illness and help must lie.” (Biddle et al., 2007: 991).

It is known that the path to receiving an accurate diagnosis of bipolar disorder is often protracted, with the gap typically ten to twenty years, as confirmed by this sample. Diagnosis is complicated by factors such as misdiagnosis of unipolar, post-natal depression or schizoaffective disorder, or problems associated with substance abuse or anxiety disorder comorbidity, as well as clinicians who fail to ask questions about highs, and individuals who fail to report all symptoms (Hirschfield et al. 2003). Not seeking help or assessment for early symptoms was a source of sadness for some participants, who regretted the time wasted in seeking, or accepting, appropriate treatment. In this chapter, the importance of early diagnosis is emphasized, not only to ensure effective treatment, but also to prevent the likelihood of psychosocial fallout, such as negative impact on educational performance and self-esteem and reduce the worsening of affect over time (Duffy et al., 2007: 829; Berk et al. 2006). A study by Greenhouse et al. (2000: 237 - 241) found that “...age and number of

Page | 119

years ill correlated with acceptance, which suggests that experience can lead to a more accommodating attitude towards one’s illness.”

The quality of health care provision, particularly the strength of the therapeutic alliance, also effects people’s experience and acceptance of chronic illness. Empirical evidence suggests that patients are most satisfied where their psychiatrist shares their model of understanding distress and treatment (Bhui & Bhugra, 2002: 6). A Denmark study by Kessing et al. (2006) proposed that patient satisfaction with care may be a significant factor in treatment adherence. However, there are significant problems in the long-term treatment of bipolar disorder. Research by Simon et al. (2006) highlighted the need for more consistent follow-up care and implementation of systematic disease management programs (to include group therapy, monthly telephone monitoring of symptoms and medication adherence, feedback to health providers, facilitation of follow-up care and crisis intervention). There is also growing recognition that patients are not adequately treated when the ‘pure’ symptoms of (hypo)mania or depression are alleviated (MacQueen et al., 2001). Richmond et al. (2000) identified that patients feel a sense of abandonment after early discharge and it is apparent that without adequate follow-up care, education or long-term support, individuals have a very difficult time adjusting. Glover (2005) suggests that to embrace a genuine recovery-oriented framework, a “continuum of care” must be considered, not simply “post crisis” treatment. Recovery should be viewed in terms of process, rather than end-point or outcome. As Mitchell, Malhi & Ball (2004: 129) noted, continuity is a vital aspect of long-term care of bipolar disorder as “[c]ontact with the same clinician enhances early identification of recurrence, and facilitates joint awareness of the continuing impact of the illness.”

This chapter focuses on subjective reactions to diagnosis, outlining complicating issues of misdiagnosis, denial and resistance and factors leading to diagnostic delay. Analysis also includes examination of peoples’ experience of healthcare professionals, in particular the beneficial and problematic aspects of the therapeutic alliance, before moving to reflect on the pros and cons of psychotherapy.

Diagnostic Delay and Denial In analysing the pathway leading to diagnosis it is apparent that, in the many cases, individuals only come to be assessed following a crisis event, such as a suicide attempt or severe breakdown. This reality indicates the magnitude of desperation individuals often reach in their struggle to deal with symptoms before they find help;

You get to a point where you think that you’re unfixable, and that’s really scary. # 5: BPD-II

Page | 120

I sat with the car in gear and my foot just balanced on the clutch, trying to decide why I shouldn’t just drive off the edge. Still to this day I can remember all the thoughts going through my mind, but I still remember the only reason I didn’t was that I thought, “That’s just all melodramatic, what will people think? I’ve obviously got something hugely wrong with me!” So after doing that for 10-15 minutes, I said, “No, I’ll go home and ring the GP.” # 4: BPD-II

I was hospitalised actually for about three months altogether [after a suicide attempt]. And then I came out of hospital and I was seeing this Doctor and he was monitoring me very carefully, and closely, and I think it was really last year that he diagnosed me. He called it ‘bipolar with psychosis’. # 7: BPD-II

Many participants admitted to denying the extent of their problems for a long time before help was sought. It is known that denial is the main factor involved in non-help seeking, commonly fuelled by fear, stigma and the desire for normalisation. For some, threat lies in the fact that assessment may confirm the reality of a significant and long-term problem, rather than offering the prospect of recovery (Biddle et al., 2007). Certain psychological theorists maintain that denial serves to maintain mental and emotional equilibrium in the short-term when dealing with uncontrollable situations (Reeves et al., 1999) Thus, delay and avoidance are understood to be common strategies of normalisation;

I wasn’t willing to face it. I mean, I always knew there was something amiss, but I ‘spose I knew it was so big, I didn’t want to look. So I pretended it wasn’t there and it would go away. And it never did. Never did. And it got bigger and bigger and bigger. # 21: BPD-II

I’ve buried me head in the sand a fair bit. I probably denied it for a long time. I was afraid to really chase it up, because I knew they’d put me on drugs that would change my moods and stuff. And I just had this preconceived idea that I’d turn into a zombie, kind of thing. I didn’t want to alter the person who I was, even though I knew the person who I was, was not a very good person, a vast majority of the time. # 13: BPD-II

I also didn’t seek [help] out, because I think I was so scared of the actual diagnosis, because of my family and just overall community thoughts about people with depression. I wasn’t ready to face the fact in a strange, ridiculous, way that I had this problem. I was in denial, as much as anybody. # 5: BPD-II

Given the high rates of denial involved in the process of adaptation, participants were typically pushed to seek help only on the urgings (or ultimatums) of someone close to them, usually when their chaotic behaviour had escalated out of control. This reality indicates that individuals with bipolar disorder have a great capacity to integrate and endure troubling symptoms and behaviour

Page | 121 before reaching their “threshold of distress” which has significant implications for the process of help-seeking (Biddle et al., 2007);

It just got to a point where it was just unacceptable for everyone. My wife said, “I’m going. Get some help.” It was startin’ to impact on the kids’ behaviour and the kids’ reactions and things like that. My son was starting to imitate what I was doing, and when I’d go off, I’d start rantin’ and ravin’ and carryin’ on. And he was sort of startin’ to do the same. I saw the school counselor and she [asked] “Why is your son going like this?” And I said, “Well, he’s just doin’ what I do.” So we started talkin’ about me, and she was the one who said, “I think you might be bipolar.” So I saw a Doctor and sort of explained some of my down times, thinking my high times were my good days. It was a slow process of just seeing the Doctor about a couple of things, and it sort of went from there. # 13: BPD-II

[The] first time I went to a psychiatrist, it was more to hold my job, cause work was gettin’ at me, I was missin’ work and they’d say, “What’s goin’ on?” They could see there was a problem there somewhere so they wanted some answers. So it sort of got the ball rollin’ a bit, it was the kick in the bum I needed to say, “Righto, I have got a problem, let’s get somethin’ done about it.” # 18: BPD-II

It was my father who sat me down and said, “I think you need to speak to a psychologist about these things.” So I did. # 17: BPD-II

Thus, it appears that many people with bipolar disorder may be unlikely to realise the need for help on their own. This situation highlights the crucial role of external support – whether family, school, workplace, etc. - in facilitating early intervention and underscores the benefits of greater community education.

Many participants first turned to psychologists or counsellors for help in dealing with problematic moods, reactions or behaviours;

I couldn’t understand why I had this obsessive, intense attraction to his other person. I was fighting it every step of the way, in myself. And I went to [a psychologist] and I said, “I can’t understand why this is happening, I don’t understand it.” # 16: BPD-I

I started seeing a counsellor and a hypnotherapist and I’d sort of go alright for awhile, then I’d start just bouncing off the walls. I’ve probably just got worse and worse and worse. # 13: BPD-II

[The psychologist] introduced me to CBT, about coming out of my shell and he showed me this book about ‘Feel the Fear and Do It Anyway’ and he also did a bit of hypnotherapy on me. # 17: BPD-II

While psychological therapy is of definite benefit in dealing with the consequences of bipolar disorder, it is apparent that the limits of professional knowledge in the field can restrict a timely and correct diagnosis. The following extended excerpt illustrates how individuals can seek help, but often

Page | 122 fall through the gap between professionals’ areas of expertise. This reality inevitably contributes to a significant delay in receiving an accurate diagnosis;

I think my first proper episode of depression, I didn’t recognise as a depression because my brother’s best friend died. So when I went to the counsellors at University to try and get help, I focused most of what I discussed was around the death of my brother’s friend. They said that I was depressed, but I didn’t have to have any medication. It wasn’t suggested to me to go to the Doctor or anything like that. So then it was years later, when I did go to the family Doctor and I went complaining that I was depressed, that, “This wasn’t the first time, that I really need help, please, please, please.” And she said, “Ok, I’m going to refer you to a psychologist.” So I went to that psychologist for a couple of times.Then I think I had a another manic thing, and I’d gone to the GP and I was complaining about depression, and I remember having to make a real point to my Doctor, “I really feel bad, it’s not the first time, I’ve been to counsellors before, nothing’s working, please please please help me.” I’d just been basically up and down and up and down and up and down. # 14: BPD-II

For those individuals who do attempt to find solutions for their problems and access help, such a lengthy lag in receiving a diagnosis proves demoralising and frustrating. However, this cycle of consulting many different clinicians was common and it seems that it often take a while, and some persistence, before the individual finds a good physician, or accurate diagnosis for their symptoms;

I’ve thought sometimes about how many health professionals I sought about my depression and I think, gosh, I really am a typical bipolar story that you know, get to your 20s, you complain of depression, go to the Doctor all the time, then get to your 30s and get a bipolar diagnosis. # 14: BPD-II

Even when appropriate help was sought, in many cases, participants discovered that the level of professional knowledge about how to treat bipolar disorder was lacking;

When you have a patient who comes in and says, “Perhaps I need to go into hospital because I’m not feeling well” and they’re with their husbands, it’s the type of questions that you ask that are important. And it’s the way that you ask. And to say to a patient, “Look, you might want to disclose something that I will not note in my records. So you can tell me something that will not be recorded anywhere.” You know, things like that. I think Doctors really need to be informed. # 16: BPD-I

The psychiatrist on that day didn’t even know what Bipolar-II was. They gave me Zyprexa, and a Valium and sent me home. Eventually I got over that depression. But it gave me a sense of - I don’t know what to do if I ever go that bad again. # 15: BPD-II

This situation highlights how essential it is to educate a broad range of health professionals on the symptoms of bipolar disorder, particularly considering psychologists and GPs are often the first port of call to address troubling symptoms of insomnia, worry, anxiety or amorphous sadness. This

Page | 123 fragmentation between clinical treatment services and psychosocial rehabilitation programmes has been identified as a significant barrier to successful intervention by researchers such as Elisha, Castle & Hocking (2006).

Misdiagnosis Fifteen participants in this sample were treated for schizophrenia, schizo-affective disorder, PND or ADHD or unipolar depression before their diagnosis was later refined to bipolar disorder. In these cases, presentation of psychosis during mania appeared to complicate accurate diagnosis. The average amount of time spent with misdiagnosis and hence, incorrect medication, was 9.2 years;

I was so sick when I went to hospital, I was very delusional, I could have looked like schizophrenia cause you’re having such bizarre delusions and really not well. # 9: BPD-I

I was diagnosed schizo-affective from the age of 18 to 23. It was the wrong diagnosis. I think it’s a major insult to my intelligence to be given the wrong diagnosis. # 6: BPD-I

I was in hospital because I’d reached pretty bad psychosis. I was delusional, there’s no way I’d deny that. So, instead of realizing it was a manic episode and I was just going up and up and up and up, because I was delusional they assumed I was schizophrenic. # 8: BPD-I

Misdiagnosis of depression is also common for reasons that are self-evident;

Of course, I’d never go and see a Doctor when I was angry or happy, I’d only go and see them when I was down, so they only saw one side of me. # 17: BPD-II

This situation underscores the importance of educating clinicians and health care professionals.

For those participants who were initially misdiagnosed, many had a ‘gut feeling’ that they were on the wrong medication but, as the following excerpts illustrate, it takes tremendous resolve, inner conviction and persistence to fight the diagnosis and pursue a second or third opinion;

Well, I always knew, I always knew I was on the wrong medication. But there are so many bad psychiatrists out there, I had bad experiences with a lot of psychiatrists, so I gave up in the end, literally, I gave up. # 8: BPD-I

I just started feeling in my gut, four months before this up-and-down cycle started happening I should have gone searching for something new then. I was in a pretty bad way. [But] you get to a point where it’s almost like you can’t do something to help yourself. I knew before I went into hospital I was really unwell, and that I shouldn’t be going to [this GP], but I couldn’t actually bring myself to find another Doctor. Just couldn’t do it! I was holding out on the medication I’d been given by the GP and waiting to see a psychiatrist. # 5: BPD-II

Page | 124

Positive Reaction to Diagnosis Analysis of participants’ reactions to being diagnosed with bipolar disorder show that responses vary from relief, hope and acceptance, to more negative feelings of shock, anger, resistance, doubt and even despair. The majority of responses are positive, as a diagnosis offers prospect of treatment and the possibility of controlling symptoms that have bought unremitting turmoil into peoples’ lives;

It was a word. So what? I’ve never had a stigma about being mentally ill, ever in my life. I decided that, “Ok, I’d been diagnosed with this, I’m going to tell the world that this is just like having diabetes, like anything else, it’s a manageable disease.” So, yeah, it didn’t affect me at all. A diagnosis is so important, at the beginning. To know what you’re dealing with. # 8: BPD-I

It was a shock that they nailed it down, ‘cause I thought it was an abstract [thing]. There might have been 10 [symptoms] on the page and I reckon 9 ½ of them applied to me. And then you say, “Well there is a problem there, definitely. They do know what’s goin’ on with me. They do know their stuff.” You’ve got a bit of confidence in speakin’ to them and go along with the treatment and all that. So there’s the relief, “I can get out of it”. Before that, if I thought there was somethin’ wrong with meself I’d think, “Well that’s the way the cards are dealt, I’ve just got to live with it, there’s no cure, that’s it, that’s me, you are what you are. Just make the most of it, sort of thing.” And this turned my thinkin’ around a bit, “well there is things that can be done.” # 18: BPD-II

I was so pleased. So pleased. # 12: BPD-II

In a way it was a relief. # 15: BPD-II

I felt like it was a step in the right direction towards treatment. # 17: BPD-II

I do have that sense that now that it’s been identified what’s wrong with me that I can now benefit from the right treatment, the right medications. I know that it can be treated. # 14: BPD-II

I found it reassuring that there was a name for the condition I was experiencing and I was not alone. [But] I was quite angry when I first got it. I said, “No, that couldn’t be true! Bipolar’s just a term they bandy around, they don’t really know what it is!” That’s what my reaction was. Basically, they just slap it on anything. # 10: BPD-I

I just remember feeling completely thrilled. All this time, I just didn’t know [what was wrong]. But here was a Doctor saying, “Here’s all these other symptoms that’s involved” and I just remember being overjoyed about it, “This guy seems to know what’s wrong with me and I can get it fixed.” # 4: BPD-II

I felt hope, that’s what they gave me. They just said, “You’ll get better. You will get better one day.” So I don’t know whether it was the hope that did it, or the drug. But it was something! Something changed.# 5: BPD-II

Page | 125

Further, in many cases a diagnosis of bipolar disorder, far from being a traumatic and de-stablising event, proved to be a significant clarifier of self and identity;

Started reading some of information and I’m kind of going, “Ooh, yep, tick that box, tick that box” and I was just tickin’ every box. # 14: BPD-II

Just reading the Wikipedia definition of bipolar disorder was uncanny because it was like reading a diary or a short story of my life. And a lot of the idiosyncracies of my character fit into the bipolar map. I was reading about me, it was like some person was looking over my shoulder my whole life, making notes about my behaviour. # 17: BPD-II

About five years ago, my wife read something on the internet about bipolar and it pretty well suited me into the ground. # 21: BPD-II

My daughter got it up on the internet and she said, “I’ve got you some information on it.” Anyway I went through it all and then I gave it to me wife and said, “Read that, who does that sound like?” And she said, “That was written about you”. The penny dropped then and I said, “Oh yeah, I sort of got to get somethin’ done now”, cause the symptoms and that were all the things that I was showin’. # 18: BPD-II

It was the first time when I’ve read anything that I could really identify with. It felt actually really good. Very good. # 7: BPD-II

These reactions appear to challenge the assumption of “biographical disruption” in the process of adapting to the trajectory of chronic illness such as bipolar disorder, and as such, emerges a relevant area of further research (Bury, 1982). It also indicates that one of the main side-effects of diagnosis is hope, which Lakeman (2004) and Crowley (2000) emphasise as central to the recovery process in building a sense of agency and self-determination.

However, despite the positives, individuals inevitably take time to understand and accommodate the longer-term consequences of the illness. As such, development of acceptance is often a slow and shifting process of adaptation, resistance and negotiation that begins with processing shock;

Oh, total shock! I had no idea what was happening to me. None. I just thought I wasn’t coping with my life. And I also didn’t have family support, so it was a huge shock. It was frightening. Because depression in our family, anything psychological is a no-no. I’d heard of bipolar and I’d spent the whole time saying, justifying, to myself, “I have depression, but thank god I don’t have bipolar!” And so, it was a huge shock, being told I had some form of bipolar. # 5: BPD-II

Page | 126

I went to a psychiatrist and he said to me, “I want you to know that you are a very sick woman. You have to stay on [medication] for the rest of your life, because you’re very dangerous, and you’ll never ever be normal again.” So of course, that knocked me on the head so to speak. # 19: BPD-I

Resistance to Diagnosis Individuals also resist the diagnosis on the basis of perceived lack of ‘proof’. As the following excerpt shows, as bipolar disorder manifests in energy, feelings and behaviours, it can be very difficult for individuals to identify, and learn to control;

This illness cannot be proven. I can’t prove it. I can’t detect this illness myself, it’s in my mind. That’s really hard, like, that’s really hard to accept something where there’s no chance of detecting it ‘cause it’s in the grey matter between your ears. I’m sorry, but that scared the shit out of me! Thinking the medication treated my mind! It’s so incredibly difficult to get your head around the concept of having a mental, mind illness. ‘Cause that’s a really scary thing for most people. Even when I’d been explained about neurotransmitters, it’s really difficult, I think that’s too much for people in the beginning, so I just ignored that. So I had to change that thought, that core belief to: “This illness is detectable through symptoms that I could see and feel.” And therefore, I can actually identify it. I can actually identify this illness within myself. There’s proof, in a way, that it’s there. This is an identifiable illness. I can identify it through being perceptive to how it makes my body feel. # 2: BPD-II

Lack of certainty can be a significant barrier to acceptance in the early stages and manifests in questioning and dubiousness. This reservation is more apparent in people with BPD-II, who do not usually associate their periods of hypomania with illness;

I just was surprised. In my well periods, it’s hard to know whether it’s more elated mood, or whether it’s just you come out of this bad period and you’ve just got such enthusiasm, for everything, for life, for doing things and being involved. # 7: BPD-II

I still remain dubious about the BPD-II. It just seems like a catch-all for a lot of different, or small, disorders. Yeah, at the time I thought, “Yeah, it sounds like me”, but it sounds like at least 80% of the people I know, you know? It’s only in the extremes that you can really call it a disorder. I mean, for other people, it’s just the way that they are and they’re fine and great, so is it a problem? Only if it’s a problem, I guess. # 20: BPD-II

Certain individuals may struggle with the diagnosis because their identity has become so “infused” with the characteristics of depression that they tend to be “pessimistic about the likelihood of recovery” and view interventions with a sense of hopelessness (Wisdom & Green, 2004: 1234). Two participants in the sample manifested strong existential despair which could possibly be an indicator of identity-infusion that may require specific therapeutic interventions to resolve;

Page | 127

I guess I’d rather know than not know that I have a mood disorder. But, being aware of these things certainly doesn’t make lying in bed, feeling sick with grief and despair and wishing that I’d get a phone-call that my Mum’s died in a car crash so I can finally go and off myself, no easier to bear, simply because I know that I’ve got a disorder. Putting a name to it raises my awareness of it, it might raise my understanding of my condition, but it doesn’t raise my understanding of myself. # 17: BPD-II

It’s sort of the chicken and the egg situation, isn’t it? Maybe it wasn’t my parents that made me the way I was as a child. Maybe it was my genes? …Depressed people, they’re not depressed because there’s something wrong with them, they’re depressed because they’re well-adjusted to the world around them and the only rational response is to be depressed. I’ve come close to believing that, because intelligence is an evolutionary cul-de-sac, it’s going to kill us. It’s not healthy for people to be intelligent. I wish I were a cat, I’d like to be a cat. # 20: BPD-II

Negative Reaction to Diagnosis Naturally, however, it cannot be assumed that all individuals respond to a diagnosis of bipolar disorder positively. Many individuals found the confirmation of mental illness devastating and it is often a long process of developing self-awareness and coping skills before the diagnosis, and subsequent need for treatment, is accepted;

I don’t accept it. I don’t accept it. I’m miserable about it. I do feel crazy. It makes me think that I’m crazy. And what else? Just the consequences then, of having a partner and having to disclose to them and all of that, all of that hassle stuff, conversations that you don’t want to have, scenes you don’t want to be at and stuff like that. I’m probably the worst person to ask right now because I have such a dire view of my prognosis, like I just don’t see things working out, or anything, so at the moment I just see bipolar disorder as this ongoing [thing], that you have to be medicated for the rest of your life, so, it’s like confirming that you’re such a swinging, oscillating, crazy person. I know I’m just stigmatising myself and everyone else out there as well, but I can’t help it. It’s embarrassing to feel that you can’t control your mood, that you can’t control yourself in situations. I don’t like it, the diagnosis of bipolar disorder. You can keep it. I don’t want it. I don’t like it. # 14: BPD-II

I was angry. I said, “Up yours”, tipped the [medications] down the sink! I thought, “Blow you mate!” [With the second episode] I said, “Why me? Can’t you choose something else? Why me?” # 19: BPD-I

It is clear that, for some people with bipolar disorder, there is a difference between acceptance and reconciliation of the diagnosis. While some individuals do accept the reality of their symptoms and necessity of medication, they nonetheless struggle with an ongoing sense of trauma and assault to their self-concept;

Page | 128

Knowing that I’ve got a condition, and learning about it, both in reading and phenomenologically, has certainly heightened my awareness, probably my wisdom to a certain extent, but it’s done nothing for my happiness and it’s done nothing for my recovery. # 17: BPD-II

It’s like this bomb that goes off in your life. On a scale of 1 to 100, this is like 110, in terms of impact on your life. And people would think, “Oh having a disabled child would be the worst thing that ever happened to you.” No. It’s not. You know, mental illness is really terrible and I still have to reconcile what, who I’m going to be. Everybody wants to be seen as a normal person. And so I still have problems with the fact that bipolar is such a big part of my life, it’s such a devastating thing, and yes, I accept it and research it and find out about it, but it’s still a daily, devastating thing and it’s difficult to live with, everyday. It’s difficult to live with. # 16: BPD-II

It was really the most traumatic thing I think that will ever happen to me. Adjusting to having a mental illness. You’ve got no skills at that point in time, to deal with it. # 9: BPD-I

Two of the oldest participants in the sample emphasise how wearying long-term coping becomes, and how difficult it is to maintain acceptance over a lifetime;

It’s thirty years. Thirty years and I think thirty years is long enough. # 19: BPD-I

It’s gone on for so long, it’ s been forty years that I’ve been like this, and as [my psychiatrist] says, “It’s such a cruel illness.” Yes, it’s so cruel. It’s still very hard to deal with. I’m holding on by the skin of my teeth at the moment. It’s still hard for me to come to terms with. # 3: BPD-I

Such circumstances therefore underscore the need for on-going therapeutic support, not just in the early stages of diagnosis. Further research is needed to identify the vulnerable stages that could benefit from targeted support across the illness life-span.

Participants’ advice to those newly diagnosed are captured in Appendix H.

Issues with Health Care Professionals Some participants also had negative experiences with their contact with health care professionals, and were often left unsatisfied following interaction with the health system;

When you’re in Emergency, they treat you like shit. You know? They are narky and they just think you’re a piece of shit. And the nurses were cruel to me. # 2: BPD-I

There are so many bad psychiatrists out there. You’re laying your life, you’re laying your feelings on the line to these people. They don’t know you from a bar of soap. I was paying these people to try and help me. And I think the first one I walked into, she was asking me about my sex life, and I’m going, “What?!” I know with bipolar you can have a high libido and things, but you know, when you

Page | 129

walk in and sit down, that’s not how you get a rapport with the patient, you know: “Hello, I’m Doctor such-and-such, how’s your sex life?” That’s really confronting. And I had bad experiences with a lot of psychiatrists, so I gave up in the end, literally, I gave up. # 8: BPD-I

Well, [it] was basically a 15 minute consultation for $200 and he was like, “How are you going with the medication? Come back and see me next time.” It was very unsatisfactory. # 16: BPD-I

GPs just write out that script and say you’ll be fine. And then if you’re not fine? You think, “Well, I’m a failure, it’s me, something’s wrong with me!” # 12: BPD-II

One participant discovered that the quality of GP assessment and treatment was affected by small town connections which required her to protect her reputation, and that of her husband and prevented her from talking honestly about the full extent of her symptoms;

Because [my Doctor] was a footy bloke and [my husband] played with him, there was this whole relationship, so he was in denial as well. And he was saying, “Mums struggle, this is your first baby, you don’t have support, I don’t believe it’s so bad. I don’t think you need to go see a psychiatrist.” [But] I couldn’t speak to [my Doctor] because I hadn’t told [my husband] about what I was really experiencing. So, I suppose in his defence, he couldn’t see someone as distressed as I was. Because I’ve always looked O.K. # 5: BPD-II

Others attested to poor follow-up care and difficulty adjusting following hospitalisation, which supports findings from Simon et al. (2006) which highlighted significant gaps in follow-up treatment, despite demonstration of the long-term effectiveness of systematic disease management programs that involve group therapy, telephone monitoring, follow-up care and crisis intervention;

It’s very hard when you’re hospitalised, because you’re in this very closed environment where you don’t have to do anything, you haven’t got the running of your house and all the other things that happen in your life, so it’s very hard when you come out, that adjustment is very difficult. # 7: BPD-II

Well, I think my follow-up care wasn’t very good at all. I’d seen a Doctor in London and then a Doctor in Sydney. Then that Doctor was on holidays so I saw someone else. And then I was on every 3 month visits very quickly. So I just think I didn’t get as good medical care as I could have. ‘Cause you’re dealing with a lot of stuff when you’re dealing with all the medicines, and the changes. But you don’t really know how to be more vocal about those sort of things. In that stage, no-one knows, your parents don’t know to question it, or to ask for more help. And then my psychiatrist retired after about eight months, and then didn’t refer me to anyone else. So I sort of had another year of being semi-recovered, but not really fully functional. You don’t have expectations about psychiatrists. # 9: BPD-I

Page | 130

If I’m dying of an insulin attack or whatever, I can’t say to you, “Don’t worry about it, come in in 3 days, you’ll be fine.” It just doesn’t work like that! When people need help, even if it’s just to talk them through it or advice, they need it now, they don’t need some receptionist or some nurse saying, “Well I’m sorry there’s 3 days to wait until I can get you in.” It doesn’t happen in the real world, of a patient with another disorder, or another illness. So why should it happen to a patient who has a mental illness? That is their symptom, it needs to be treated then. Just because it’s not tangible, it’s a mental symptom. # 8: BPD-I

As Goldberg and Harrow (2005: 88) highlight, the ongoing disability of chronic illness has the potential for demoralisation and resignation to lowered life expectations. Clinicians must therefore be aware that patients’ satisfaction with treatment may reflect adaptation to limited expectations and modified goals in line with altered homeostasis. Greater scrutiny is thus needed to assure treatment needs are being met.

Some individuals felt that their ability to fully communicate their concerns was restricted. For example, one individual had no plan for when she felt suicidal and had not yet been able to ask her psychiatrist for practical advice;

Sometimes, he’s very quick. I only have half an hour, and look, I’m happy with that. But I don’t ever feel I ever get to talk to him very much. He’s very good at picking up on what I’m saying and then diagnosing and giving me ideas for medication. [But] he hasn’t given me a plan for [when I feel suicidal]. I tried to ask him last time, but he got me up, I think he had someone else waiting. # 15:BPD- II

In general, it takes time for effective therapeutic alliances to be established. Individuals typically learn to become more empowered in ensuring their needs are met with experience;

You learn to become more self-reliant in the process, to be a little bit more demanding if you want something different from your Doctor that you’re not really getting. # 9: BPD-I

Lack of Information Further complicating matters is that, even when individuals are given a diagnosis, they often receive very little information about the illness. In many cases, they are offered no resources or follow-up care, making the odds of managing triggers and early warning signs to reduce rate of relapse unlikely;

I didn’t know anything about depression. [The GP] just gave me the tablets and said, “Take these” and didn’t explain to me anything about it. And I thought, “Oh, depression” but didn’t relate my behaviours to depression. He gave me the drugs and then the only time I really spoke to him was

Page | 131

when I bought the kids in for their shot. So if I had a problem, or if I needed something in particular, he would just say, “How are you?”, but nothing formal. # 5: BPD-II

What [the Doctor] didn’t really do was give me a lot of information up front about how medication needed to be monitored and I needed to address a lot of other areas as well, lifestyle issues. So whilst it was great and the feeling was very, very positive to finally have something diagnosed, you know I really sort of was left with the impression of, “Well, you just take this pill and that’s the last you’ll see of it type of thing”. But the reality is a lot different. Even after I’d been diagnosed with this thing, it still didn’t automatically mean everything was ok because there was still the managing of it and so on. # 4: BPD-II

The other thing too is; everyone knows where to go if you’ve got a pain in your stomach or you sprain your ankle. If you’ve got mental illness, where the hell do you go? No-one knows where to go! An educational program, in this day and age, really should be in schools. # 8: BPD-I

Given the lack of information, it is not surprising that some participants were initially confused by the diagnosis. Not being equipped with the tools and knowledge meant that they were unable to accept the reality of illness;

I just didn’t understand it when I was first diagnosed. You can’t solve a problem without understanding it. It’s like, “Solve this maths problem”, without understanding the formula. I was clueless about how it operated within me. It’s not a mood disorder! It’s physical. This is the reason it took me two years to accept my diagnosis, I swear to God. Because I thought the illness was in my mind! I just couldn’t see that a high was totally physical. Bipolar disorder has always been in my body, like a sensation in my body. # 2: BPD-I

It would have been nice to have a bit of knowledge about it. A little, even just a tiny bit, even just a name. And just, a brief outline, to know why. Why ya done what ya done. # 13: BPD-II

Evidently, the more information individuals have at their disposal, the more confident they feel about managing the disorder;

Now it’s different because I’ve just got this unbelievable wealth of knowledge, so I feel completely differently to my condition than I ever did before. I never got a diagnosis before, so with that diagnosis also comes all this extra information, so I’ve so learnt things I should do and what you shouldn’t do and whatever. # 14: BPD-II

Such findings highlight the importance of the nature of quality of the treatment alliance, particularly a collaborative approach, in ensuring the success of interventions in managing bipolar disorder, as indicated by Berk, Berk & Castle (2004).

Page | 132

Beneficial Relationship with Psychiatrist Those individuals who shared positive experiences of their psychiatrist cited respect, intelligence, availability, a caring attitude, empathy and giving hope as important elements;

When I found my new Doctor, I just knew it was right. She’s an amazing woman, in so far as I have all her contact numbers, I can pick up my phone now and call her and say, “Is this normal, is this ok?” And she’ll say, “Come and see me” or she will say, “Until I see you, I want you to do this with your medication.” And I know I’m lucky in that sense, but, for god’s sake, I’ve worked damn hard to get it to that position. To find a Doctor that has that caring, is so important. # 8: BPD-I

He was very, very interesting and very funny. And for one thing, he is obviously a very intelligent man. And so I respected him in that sense, straight away, because I could see, just from his mannerisms, that he had a weight of intellectual authority, to the point where he doesn’t need to fling it about and I’ll respect a person like that instantly. Because you can sense it in him. So I was very willing to listen to what he had to say, which often I’m not. So it was really good to come and have these things discussed with someone who I instantly had a basic respect in that regard for. # 20: BPD-II

[The psychiatrist] didn’t let me talk much, he asked questions and I answered them instead, which was the first thing that made me realise that he was a highly competent person as opposed to the other Doctors who would go, “Hmm, hmm” and listen, without saying anything back. He was in charge of the discussion, not me. # 17: BPD-II

He listened to me. And he said to me,” I understand, that must have been horrible for you, that must have been terrible.” And I’ve been to many psychiatrists [but] he was prepared to listen to me. # 19: BPD-I

[He’s] excellent in giving care and being caring and supporting you and he’s always been fantastic in giving me hope and that kind of thing. Praising me, and he’s amazing with the medications. # 2: BPD-I

Pros & Cons of Psychotherapy The usefulness of CBT and counselling was acknowledged by many participants to be a useful adjunct to medication. Many clinicians, such as Orum (2008) and Vieta & Colom (2004), suggest that psychological management has an important role in helping individuals take informed, preventative action, cope with the psychosocial consequences of episodes and develop strategies to improve inter-episode functioning and quality of life. Analyses of the narratives supports the fact this type of therapy is helpful for dealing with issues such as acceptance of diagnosis, adjustment following hospitalisation, goal-setting and moving forward and shows that effective coping with bipolar disorder involves much more than provision of psychiatric medicine;

Page | 133

I think [counselling] probably helped me tackle the enormity of what had just happened in my life and what I was going to do about it. [And] getting back to work, CBT was kind of helpful for when you’re feeling irrationally negative about things. # 9: BPD-I

I think I’ve really benefited from [CBT] to think healthily about what this mental illness is. I think it [helps] to focus on looking at your core beliefs surrounding your new diagnosis, and what you think about it, because the medication will be accepted much more quickly. # 2: BPD-I

It’s having the right counsellor to help move forward and not keep looking back at the reasons why. There’s different reasons why it’s actually brought on, from what I can gather, and it’s just having the right therapist to say, “We’re moving on now, we’re moving into the future, and we’re going to deal with it, let’s leave that in the past and let’s move forward and make some changes in your.” And I feel empowered by that. I feel empowered about moving forward and looking forward to the future and dealing with future instances and relationships when they arise. Rather than talking about the past all the time, which makes me sad. # 12: BPD-II

I’m going with [my psychologist] to places that I’ve not been before, with someone, so I think that’s very positive. And she’s very optimistic and confident. So I just think, maybe I’m really going to get somewhere this time. # 7: BPD-II

However, not all participants who sought psychological therapy found it beneficial;

It’s very difficult to think my way around it in any cognitive-behavioural sense. [Psychotherapy] doesn’t feel constructive, especially considering that the advice [my psychologist] gives I’m already aware of. And I just fail to do. I don’t think that psychologists have any more tricks up their sleeves that can benefit me. The advice they give me is not new, I just have this problem with applying myself. Day after day goes by where I get nothing done and it cuts me up every day. # 17: BPD-II

I thought “I can’t bear any more psychotherapy! Any more talking!” I didn’t want to talk anymore, because I didn’t feel it was helping me [and] all the while [the psychologist] would be typing information into the computer, not looking at me! You pay your $130 bucks and out you go. # 5: BPD- II

It was the most bizarre experience I’d ever had in my life. [The psychiatrist] hardly said anything! At the end of the half hour he said, “Oh, ok, well, I’ll see you next week.” No feedback, or anything. Nothing! Then the third time, he shut his eyes and went to sleep. And I said, “Excuse me, but are you asleep?” And he said, “Oh no, no. Oh, you thought I was asleep, did you?” And I said, “Yes, your eyes were shut.” And he said, “Well, your observation of what I am doing is a really important indicator of your previous life experiences. If you think that people are not listening to you and that are going to sleep on you, it’s obviously a trigger.” It was some sort of psychodynamic view. But after that, I just thought, “That was complete and utter rubbish!” # 5: BPD-II

Page | 134

I went to [the psychologist] many, many times over about six months, sometimes more than once a week, and I just talked and talked and talked and talked and talked. [H]e would sit there and he would nod and go, “Hmm, hmm, hmmm, hmmm”. And he would say something tantalising insightful in the last five minutes of our session then say, “But we have to wrap up there”. By the time I saw him again I guess he’d forgotten most of it. That was just the cycle that repeated. He never gave me any advice, he just listened and listened and listened... He never helped so I stopped seeing him. Got on with my life. # 17: BPD-II

This could indicate either that there are certain stages in the adaptation process where psychological counselling is ineffective until the physical symptoms are brought under control, or that certain temperaments respond better to the psychological approach, or that many individuals receive an inappropriate therapeutic approach.

Summary While diagnosis is complicated by delays in help seeking, normalisation strategies and misdiagnosis, it is encouraging to learn that the majority of participants had a positive reaction to their diagnosis. Most felt renewed hope that treatment would relieve symptoms and help regain a sense of stability in their lives. Importantly, analysis indicates that it is possible that diagnosis is experienced as a ‘biographical clarifier’ rather than a ‘biographical disruption’. However, there were still many individuals who struggled to reconcile their diagnosis and it is evident that, for some, much work needs to be done to integrate the significance and consequences of the illness into their lives and self-concept. It is possible that these differences in reactions relate to the time spent with diagnosis as it appears that whilst individuals may initially reject the validity of diagnosis, as episodes recur and the pattern of illness is carved out, awareness, skills and management techniques do develop over time. The impact of bipolar disorder on identity development will be explored in-depth in the relevant chapter. Analysis also underscored the essential role of support networks and the wider community in identifying symptoms and facilitating assessments that lead to timely diagnosis. The importance of educating clinicians and health professionals, and creating an integrated system of assessment and intervention was also highlighted. However, the key issue raised here is that adaptation to a diagnosis of bipolar disorder is a fluid process that is constantly worked on, re- negotiated and questioned over time.

Page | 135

Experience of Medication

Diagnosis is only one step in the life-long process of managing bipolar disorder. While many individuals may initially feel relief and a renewed hope that they will receive help for troubling symptoms, this reaction does not necessarily ensure acceptance of medication as a valid long-term treatment strategy. Thus, optimism following diagnosis may be short lived and there are many factors that complicate issues of compliance which will be examined below.

Understandably, individuals take time to decide how they want to manage their mental distress. As patients, they have the right to exercise choice in relation to their health and should be told of the benefits and potential negative consequences of taking medications in order to make an informed choice about their treatment options (Perkins & Pepper, 1999). However, Bowskill et al. (2007) found that patients experienced high levels of dissatisfaction with the provision of information about medication and suggest that, in order to facilitate informed choice and treatment adherence, clinicians need to give information appropriate to each individual’s level of cognitive function at different phases of the illness. Gaudiano & Miller (2006: 671) found evidence of a relationship between patients’ initial expectancies for improvement and long-term outcome. Results suggest that expectancies were a “strong predictor of response” and thus a possible intervention target. Studies by Patelis-Siotis et al. (2001), Otto et al. (2003) and Vieta & Colom (2004) support the addition of psycho-education, particularly CBT, to maintenance drug therapy to improve coping and inter- episode functioning.

Many researchers relate lack of compliance to issues of insight (Darling et al., 2008) but, as Hamilton & Roper (2006) & Yen et al. (2007) point out, awareness of the reality of a mental disorder, awareness of symptoms and awareness of the need for treatment are different issues. As mentioned in the previous chapter, denial can be psychologically protective and thus resistance a common stage in a complex process of negotiation (Hamilton & Roper, 2006). Bollini et al. (2004) found that “denial of the disease and need to test its continuing presence” were the main causes of non- compliance in a sample of depressed patients.

Furthermore, given the fact that many medications have troubling side-effects and that many individuals with bipolar disorder remain symptomatic or experience relapse whilst taking medication, the costs of taking treatment may be more than the costs of relapse. Thus, for some individuals, it may be a more rational decision to not adhere to a medication regimen (Perkins & Pepper, 1999).

Page | 136

Additionally, the decision to take medication is also complicated by the fact that there is considerable evidence to suggest that there are risks, as well as benefits, to the use of antidepressants in bipolar disorder patients. Some individuals risk inducing manic episodes or rapid cycling through the use of anti-depressants (Carlson et al., 2007; Koukopoulos et al., 2007; Mitchell & Schofield, 2004). Worsening of affect was indeed reported by a number of participants. All these factors may provoke resistance to the need for preventative treatment using drug therapy.

Clearly, how individuals cope with bipolar disorder is strongly influenced by what having the illness and taking medications means for them (Pope & Scott, 2003). For some, treatment can be perceived as a threat to their freedom of choice (Mueser et al., 2002). In understanding this issue, it is also important to understand how taking medication effects peoples’ self-concept. Carder et al. (2003) demonstrate that, for some individuals who are asymptomatic, the taking of medication is the only daily sign of illness and, as there is no immediate symptom relief, receive no cue reward for pill taking. Kwintner (2005) suggests that medication symbolises thwarted autonomy and creates a fear of dependency. Scott (2002) and Cohen (2005) demonstrate that compliance is influenced by perceived controllability. Anderson et al. (2008) found an association between medication adherence and life contentment in people with bipolar disorder and results indicated that individuals who were more likely to comply possessed better coping resources and a stronger belief that their behaviour affected the condition. Thus, beliefs about illness are an important predictor of medication adherence.

In order to ensure the issue of non-compliance is not pathologised, however, it is important to understand that there are many rational reasons underlying decisions not to take medication for bipolar disorder. Analyses show that acceptance is a process of experimentation that typically involves stages of testing need and efficacy.

In this chapter, the positive and negative experiences of medication will be explored, along with analysis of peoples’ experience of side-effects and reasons for non-adherence.

Positive Response to Medication The results of the survey show that medication was rated as the most important strategy in managing bipolar disorder by all respondents (n=17). While there a many problems related to side- effects, wrong medication or incorrect dosage, it is clear that when individuals are correctly treated with drug therapy, the results can be profound. The right medication can offer individuals a chance to ‘feel normal’, often for the first time in their lives;

Page | 137

For the first time you know what normal is, basically. The sooner you understand the disorder, and accept the medication, the sooner you feel like what it’s like to be normal. And then you can manage. The medication helps. But the main way that it’s helped me is being able to show me what it was like to have a normal body. My medication treated my sweaty hands, my shallow breathing, it treated my physical lethargy, you know. It treats the feeling [of] adrenalin, endorphins, the tingles, the rush all through your body, like electricity. It was the best thing that was ever done for me, [showing] me what it is to be normal. And now I can just recreate that for myself. That’s what it’s given me. # 2: BPD-I

I tried all those things, the lifestyle and the sleep and the meditation and things like that. The only thing that works is the medication. You can do all those techniques, you can do it until the cows come home. The medication is kind of like a gatekeeper. [It’s] in your armoury of things that you can do. If I need [extra] I take one, then it just calms me down, so that I’m normal. # 16: BPD-I

I’ve got an extra mood stabiliser, it’s fucking hardcore! It just knocks you out and stuff. But actually, I felt alright after that, I felt quite normal, the most normal me that I’d felt in ages. # 14: BPD-II

I’m probably more normal. I’m hoping that the medication will just moderate me and keep me a more controlled person. I don’t want to change who I am. I just want to be able to control who I am and control my reactions and I’d be pretty happy with that. Keep taking the little purple tablets, hopefully I’ll mellow out. # 13: BPD-II

It’s like getting’ lashed with 100 lashes and now you’re gettin’ lashed with two lashes. The chaos has stopped. And what follows that is a better life. # 18: BPD-II

Others recognised that while medication does not prevent the cycle of highs and lows, it can ameliorate the depth of depression and is an important component of stabilisation;

Even though I could say I get frustrated with Lithium cause it’s not working in the sense of preventing my episodes, it is making the depressions much better. By a long way, by at least half. So I think it’s worth taking, even just for that, even if I just keep cycling all the time. # 9: BPD-I

Many participants could recall the exact moment when they could feel the medication taking effect, and this moment is often signals an important turning point in acceptance and treatment;

It worked beautifully. I remember taking it and six hours later - I know they say it takes weeks - but I could just feel a relaxed feeling. It did take a few weeks to have the full effect but I was just over the moon about it. I started to enjoy my children, so that was a good thing. # 15: BPD-II

When [the GP] introduced Lithium it was like, “Oh my god, this is what it’s like to be happy!” It was incredible. It was extraordinary. And it was like a warmth, I remember this warmth in my brain, it was like this most amazing feeling of things improving, of things feeling good. # 5: BPD-II

Page | 138

They say that it takes weeks for the effects to kick-in, but when I’m severe, it happens within days. Within days, literally the second or third day of being on the pills, it got better. It was like magic. # 17:BPD-II

I can feel it doin’ me good. I can look back and say, “Well, the proof is in the pudding”. Over the last 15 months I haven’t had a day off work and prior to that, we’d get our sick days in July and I’d have used them up by August. # 18: BPD-II

Well, since I’ve started taking the medication, I’ve had no problem getting up in the morning. That’s what the medication’s done for me. It gave me lots of energy. Like, I started running, which I’d never done before. Some of the depressive thoughts stop. I don’t clench my fists anymore. I guess I kind of loosened a bit. It’s made it just that little bit easier. It’s taken the edge off the pain, I guess. # 20: BPD- II

The internal stability that comes from being treated with the right medication opens up future possibilities that also create a sense of optimism and hope;

Since I’ve been taking the mood stabilising tablets, I haven’t had the anxiety. And lately, I’ve been a little bit excited that maybe these mood stabilisers will allow me to work full-time. I’m going to give it a shot, anyway. # 15: BPD-II

Testing Process However, despite achieving positive results through compliance with a drug therapy regime, most individuals none-the-less experiment with phases of non-adherence in order to clarify the medication’s efficacy and test its need. This testing process can recur throughout the life-span of the illness;

Everyone wants to get off medication. [There’s] a stage you think you’re just going to get over it. I wanted to get off the Zoloft altogether and just meditate and exercise for the rest of my life. # 15: BPD-II

I decided to just wait and see how long I would cope without medication. I thought I could try and keep on top of it, just through meditation. # 17: BPD-II

Some individuals weigh up the costs and benefits of medication and decide that they are prepared to risk relapse rather than contend with the negative effects of medication. This may be because they do not yet understand the pattern of illness and the importance of extending the stable ‘middle-ground’;

I’m considering I might actually see a doctor about tapering off the medication for awhile. Because I think I’ve taken it for a year now [and] if I can taper it off in the next six months, I’d like to see if it’s

Page | 139

just getting over a hump, you know, maybe I can deal with it. I’ve got good support at the moment. A good opportunity to see if I can deal with it. There’s no way in hell I’ll be dropping a pill everyday for the rest of my life. No way in hell I’ll be doing that. So, now is a good time for me to try. I’d like to try while I’ve got the opportunity. # 20: BPD-II

I don’t mind taking my medication when I’m not well, when I am a bit manic and when I am a bit depressed. But it’s the rest of the time that I don’t want to take it because I don’t like that feeling of flatness that it gives me. You know? I want to be able to go off it from time to time. That’s what I want to be allowed to do because it’s my body and I don’t hurt anyone else when I’m manic and when I’m depressed. # 11: BPD-I

These examples suggests that some individuals who have sought help for symptoms of depression or mania and may even accept a diagnosis of bipolar disorder, do not necessarily accept the necessity for lifetime compliance. It seems that it is only until the link between medication withdrawal and relapse is recognised do people with bipolar disorder become reconciled to the idea of staying on long-term medication. Typically, this acceptance entails identification of a pattern from one’s own experience, and understanding of the differences between illness management and illness cure;

Just the re-occurrence of it. The lived experience of what I was told, [that] this is a long-term thing and it’s not something that we’re curing but we’re keeping in check and we’re managing, along with other aspects of lifestyle that need to be consistently managed for a long while and probably forever. The one thing that finally got through is: you need to think about treatment in terms of 10 or 15 years or forever type of thing. # 4: BPD-II

The ramifications of untreated bipolar disorder in terms of negative consequences on jobs and relationships are also a key motivating factor in taking medication;

You lose jobs for stuff like that. And actually, that’s what made me start taking the meds. I was like, “This is out of control, this is out of control, this is all too much now.” # 14: BPD-II

The ramifications of not [taking medication] are just not worthwhile thinking about. Even if they’re not dramatic life-threatening things, they can be significant none-the-less, life-changing sort of career things, issues around relationships, the massive pressure on the people around you, so a it’s a small price to pay to be taking medication. # 4: BPD-II

Negative Reaction to Medication Despite willingness to pursue treatment, numerous participants experienced significant problems and side-effects. The main issues centred on problems related to deterioration of abilities, over- medication, weight gain, low libido and side-effects of withdrawal. There is also a significant risk of

Page | 140 demoralisation for individuals who are compliant and ‘follow Doctor’s orders’, only to find the medication options ineffectual;

I was screaming, “No-one’s helping me, they keep telling me there’s help out there for depression, but there’s not!” And, you feel that. Cause if you’re on antidepressants and you’re depressed, there doesn’t seem to be any help. Because when you’re on a powerful anti-depressant that doesn’t work, you can get very demoralised. # 15: BPD-II

I still had depressive episodes and it’s very discouraging, when you you’ve been taking the medication religiously, for years, and you go through another episode, popping the pill and putting it in your mouth when you feel lousy, and you’ve been taking this pill for days, weeks, months, years on end causes you to question, “Why bother?” # 17: BPD-II

The harsh reality of treatment for bipolar disorder is that medications can lose their efficacy over time;

I’ve always been compliant and I’ve always been shocked when it doesn’t work. The time when I had to go off Lithium I was very upset because it had been so good for me. # 6: BPD-I

I mean it always starts off terrific, you go, “This is the drug, I’ll be fine now.” But it’s my experience that it poops out. I would have been happy on anti-depressants, but they just don’t keep working. # 15: BPD-II

Getting medication to the right levels can also take time, and individuals are often involved in a frustrating process of trial and error before they begin to feel their troubling symptoms alleviate;

They took seven weeks to kick in and I was pleading, “Please give me something else, please give me something else” and [my Doctor] was like, ‘”Just wait, just wait, just wait.” It takes ages to get the medication right, so you just don’t know when you’re going to be fixed, or when you’re going to feel better, really, genuinely feel better. # 14: BPD-II

We’d done lots of different drug changes, a huge amount of drug changes, or it felt like a huge amount because they all had different side-effects. It’s taken almost nine months. # 5: BPD-II

Now I have to juggle all of medications again, some have worked and others haven’t. So I’m hoping I’m on medication now that can help stabilize me. # 12: BPD-II

These testimonies highlight the need for good support systems and trusting relationship with practitioners during the initial trial periods. It points to the fact that patients should be aware that working out the right dosages takes time, in order to deflect any feelings of demoralisation or despair from developing.

Page | 141

Side-Effects Also related to these issues is the need for clinicians to be transparent about the reality of medication side-effects. Some participants in this sample had developed severe health conditions that greatly reduced their quality of life as a result of their medical treatment for bipolar disorder;

I was on Lithium for 20 years [and now] I have to have dialysis and maybe a kidney later. I can hardly walk. # 6: BPD-I

I have a disability connected with the medication – tardive dyskinesia. Because of it my mouth is moving all the time and grinding on my teeth. # 3: BPD-I

It affects the pituitary gland and it makes your body think that it’s pregnant, so my periods stop and I get milk in my breasts. This is supposed to help me with my bipolar?! It’s making my body think that it’s pregnant! Plus I put on weight. [The lithium] leaves a metallic taste in your mouth. You get a thirst, so you urinate more often. Oh God, I’ve had some near misses, I’ve nearly wet myself on a few occasions, it’s terrible. # 11: BPD-I

Other side-effects were not as chronic, but were evidently uncomfortable and disrupted people’s functioning and daily routines. The main issue of concern was the sedative effect of certain medications. It is not clear whether this ‘zombie’ feeling is a typical treatment outcome or if it results from over-medication, or incorrect treatment related to wrong diagnosis. Whatever the cause, the reality was disturbing for many individuals;

I’ve just noticed a lot of deterioration in my abilities and my drive and I do tend to blame it a lot on my medication. I don’t like the way that the medication makes me feel. I feel like I’m drugged out, and not very happy about that. To me, it’s just not on. Look at me. Look at how I’ve changed over the years! # 11: BPD-I

I’m actually sitting here pretty wasted half the day and I continuously forget what I’m doing or talking about. # 14: BPD-II

I was just so sedated. So sedated it was ridiculous. I would sleep from 8.30 at night to 8.30 in the morning, but comatosed sleep. Like, could not move, it was that bad that when I had my first child, the first three months, my husband did everything, everything. I just did not move. # 8: BPD-I

I was really doped up. Now I see why, for my own safety, so I couldn’t go out and get high basically. So I was put on a lot of medication and then just slept for a few months. And that wasn’t a good time, I was totally zonked. That was really horrible. # 2: BPD-I

It made me a zombie, an absolute zombie. I’ll always remember just walking around like a zombie. # 15: BPD-II

Page | 142

It did calm me down a lot, it probably took my mania down to hypomania, but it’s a very strange feeling. I didn’t feel manic, but I didn’t feel normal, but I wasn’t depressed. I just felt like a zombie, but a zombie that was really uncomfortable in my own skin, it was like an itch, but it wasn’t anything I could scratch. It’s just a really horrible, yeah, wired up feeling. # 16: BPD-I

[My psychiatrist] was over-medicating me. It would sort of bomb me out. # 7: BPD-II

They were treating me for schizophrenia. From the age of 18 to 23, I was a zombie. # 6: BPD-I

Other complicating side-effects were related to weight gain or low libido that affected self-esteem that often feed into the negative cycle of thinking in depression;

I’m annoyed that Doctors didn’t talk to me about side-effects in the beginning. Cause putting on weight when you’re depressed, you just think it’s your fault. I think that’s really something I needed more control over. # 9: BPD-I

I’ve put on a lot of weight. I was a skinny little thing, always. And Mum has a thing about weight, she’s always saying, [whispering], “Get off those drugs and you’ll lose that weight.” And sometimes I think, “Oh Mum! You just don’t understand! Why would I willingly put on more than 10 kilos and spend $30 a month if I didn’t feel like I had to?” # 15: BPD-II

It was like for years some aspect of my sexuality had been numbed or something. # 17: BPD-II

My sex life’s gone. I have no libido, whatsoever. It’s a huge problem, huge problem. # 20: BPD-II

Medication Withdrawal The side-effects caused by medication withdrawal were also revealed to be quite traumatic for some participants, in one case directly caused a suicide attempt;

[My psychiatrist] decided that I’d come off this medication. But I came off it very quickly, and I suffered withdrawals, terrible withdrawals. I’d never experienced agitation before. I couldn’t keep still, and really, very, very depressed, to the point where I attempted suicide. A very bad attempt. A very big attempt, with an overdose, and I nearly died. # 7: BPD-II

For others, the physical and psychological effects of withdrawal were distressing, and sometimes creating an enduring sense of unease about taking similar medications in the future;

I’ve tried to get off anti-depressants before and it’s horrible. Oh, it’s terrible. It’s very addictive physically, you have withdrawals and it’s like having the flu and you get very teary and you have these brain zaps, and you end up taking the anti-depressant again, not because of anything other than to stop the physical withdrawal. So I thought, “Ok, I’m going to do this really slowly.” And they’re little capsules and they’ve got like about 300 beads, and I actually emailed Wyeth and asked how many

Page | 143

beads are there in the Effexor? Because I don’t care if it takes me a year, I don’t want to have those horrible, physical things, because you end up just taking it again because it’s so horrible. So I’m counting beads! # 15: BPD-II

I’d never experienced any withdrawal until the Effexor. And the withdrawal is quite vivid. Within about a day and a half of missing pills, I would start to get brain zaps. It’s feels like jolts of electricity in my brain. I would actually hear a rushing sound in my ears, ‘Whoo whoo’, like a wave crashing on a beach. I could move my eyes and ‘Whoo, whoo, whoo’ and I would hear the noise and I would get that rush of what felt like electricity in my brain. It’s like ‘Zzzz’ in your brain. The other thing I noticed within a day of going off the pills was that I would be very susceptible to crying. So extremely volatile.# 17: BPD-II

Ohhh! It’s awful. I get a pulsing in my head and it comes through my jaw and into my teeth [stiffens]. It’s very uncomfortable and I get to about 2.30 in the afternoon and I get it, and I go, “Oh, I forgot to take it!” # 21: BPD-II

It’s a feeling like electric shocks in your brain. It’s a physical sensation in your brain, things firing in your brain. I could feel it and I thought, “Shit, it’s going to explode!” Sometimes I feel really terrible, but you have to just put up with it. # 16: BPD-I

Reasons for Non-Adherence Despite the fact that medication is the mainstay of treatment for bipolar disorder and highly rated by the participants, the majority in this sample attested to poor experiences in relation to medication use. It is clear that obtaining the right levels of medication is complex process complicated by many setbacks. The following analyses provide insight into the idiosyncracies underlying rationale for non-adherence;

I expected, you know, like havin’ a beer, you get the instant hit and all that sort of stuff. So I stopped takin’ it and I’d go along ok for awhile and then I’d crash again. # 18: BPD-II

To be honest, because my life was so unmanageable through the alcohol and drug, things like managing to take a tablet at the same time each day was very hard for me. I to’ed and fro’ed and just never really got it right, for a long time. # 21: BPD-II

There’s too many people just popping pills to solve the problem. I just don’t think we understand enough about consciousness, about how we even manage to do what we do. It’s all hit and miss. # 20: BPD-II

I’m reluctant to stay on the pills, because I really feel that they are bandaids. Yes, depressive people may have a chemical imbalance in the brain, but the chemical imbalance is caused by certain patterns

Page | 144

of thinking, by and large. So having a pill to restore the equilibrium is not addressing the cause, only the symptom. # 17: BPD-II

I can only tell my situation when I’m off my medication, that’s when I’ve been able to get perspective. It’s my body and I choose to put in it what I want to. I’m on medication and I’m depressed. It’s not working. Why take it? I want to have a play at my own future. # 11: BPD-I

I need to have six of the tablets a day, just to get it to [the right] level. See, that makes me feel crazy! The pills are about that big! So three of those in the morning, and then at night, three more. You know, come on! I’m like, 50% lithium! # 14: BPD-II

Some participants avoided medication out of fear that it would alter fundamental aspects of self;

I didn’t want to alter the person who I was, even though I knew the person who I was, was not a very good person, a vast majority of the time. # 13: BPD-II

It feels that the true you is being taken away a little bit. Feeling that you are giving yourself over to pharmaceuticals, and that is going to have an impact on your personality. # 15: BPD-II

There are times when I thought that there is no possibility of keeping the same personality. I remember I stopped taking them because I didn’t like the way I was turning, the way I was changing. It felt more like I was losing parts of myself, or parts of myself weren’t working as well as they were before. # 20: BPD-II

When I’m taking medication that alters my brain, and subsequently my mind, it’s a little…jarring, I guess, ontologically, for lack of a better word. I don’t think that anyone is comfortable with knowing that they take a pill just to make them normal. Because emotions are intrinsically linked with who we are as a person, and something that alters those is unsettling. If you have a condition with any other organ apart from the brain, it’s easy to accept, because the symptoms are there, you take your medication, the symptoms stop. And because the organs in your body aren’t really personal, you own them but they’re not linked to your concept of self, at least in the same sense that the mind is. So I suppose philosophically, medication that alters the way I think is vastly separate, in terms of acceptance, to medication that simply alters an aspect of my physicality. # 17: BPD-II

Straight away I start feeling better, when I go off the medication, I start feeling bit full of life again and happy and good for a change, you know? You don’t take them and you start feeling nice, why wouldn’t you do that? How can you stay on something that keeps you like this all the time [flopping motionless in chair]? When you want to be happy? You know, get the spark back. # 11: BPD-I

The fear of losing essential aspects of self was thus highlighted as a matter of concern for many participants. This issue will be taken up later and explored in greater detail in the subsequent chapter focusing on identity.

Page | 145

Summary This analysis illustrates that individuals do experience significant problems with medications and details why adherence is a genuine cause for concern for most patients. Findings highlight the importance of candid communication between clinician and patient and provision of realistic expectancies about treatment. Informed choice is best facilitated through open discussion of the time it can take for the correct medication and dosage to be implemented, the phenomenon of medication ‘poop out’, as well as side-effects and withdrawal.

It also seems pertinent to educate individuals on how they should be feeling if medication is working optimally, and what level of efficacy to expect. Thus, people could be more empowered to seek second opinions or a medication review if they are suffering ‘zombie-like’ feelings as a result of wrong medication or incorrect dosages. Information made available about how a correct drug regime helps people with bipolar disorder feel ‘normal’ may also reduce peoples’ fear of the impact of medication on fundamental aspects of self. The next chapter will continue analysis on this theme of self and identity.

Page | 146

Identity Issues

There is an enduring sense of vulnerability following the experience of mania, depression or psychosis and the experience of altered mental states adds further complexity to maintaining a stable and coherent sense of self. Psychologically, the aftermath of episodes takes time to recede. Time is also needed for individuals to re-focus on themselves as a person, not as a diagnostic category . In-depth qualitative analysis allows exploration of the interplay between bipolar disorder and biographical disruption, as well as opening up new fields of phenomenological understanding. To this end, research into how individuals with bipolar disorder experience their illness and reconstruct their life stories in relation to it, are essential.

The constantly vacillating energy and mood states of mania and depression have been shown to produce actions, drives and cognitive processes that are changeable and often opposing the individual’s fundamental sense of self. Given the fact that these fluctuations of illness have been shown to alter the expression of personality and desires and “…exaggerate the sufferer’s normal tendencies...” (Grounds & Armstrong, 1992: 10), it is prudent to question the extent to which bipolar disorder impacts on the formation of identity. Bipolar disorder is “…often said to colour the behaviour and thinking of those that suffer from this illness – even when well – to the extent that many individuals find it hard to define their true self” (Olley et al., 2005: 323). Thus, it is important to explore the interrelationship between the disorder and self in order to understand how identity is constructed in illness. Specifically, the focus is on examining how bipolar disorder defines, sustains or changes peoples’ understanding of themselves. Interpretative phenomenological analysis help illuminate the efforts undertaken to make sense of shifting identity over the course of illness (Jago, 2001).

A sense of consistency of values, behaviour and personhood is integral to be able to experience a sense of safety and confidence in the world and it is precisely this stability of self which bipolar disorder threatens (Laing, 1960). Bipolar disorder can thus create ontological insecurity by leading individuals to question the continuity and cohesiveness of their identity. An essential purpose of this analysis therefore, is to determine whether individuals act to integrate or reject the identity that is created in mania or depression.

The longer bipolar disorder has progressed without intervention, the more difficult it can be for individuals to extract their ‘true’ self from expressions of the illness. For example, following diagnosis, identity characteristics and personality traits may be equated with manifestations of

Page | 147

mania, or may be altered through the effects of psychiatric medication (Grounds & Armstrong, 1992). Thus individuals may experience profound uncertainty in relation to self and have difficulty establishing authenticity and identifying what parts of them endure beyond the illness. Depending on how entrenched identity has become with the patterns of illness, individuals may resist medication, or employ various defence mechanisms in order to sustain a sense of self that is validated in illness. In addition, the distortive schemas that develop in mania and depression can result in an enduring ‘cognitive scar’ that affirms a “...stable, negative knowledge structure about the self...” that may prospectively interact with stressful life events to produce mania (Meyer, Beever & Johnson, 2004: 175). Thus, schematic appraisal is understood to be a pertinent factor in the process of psychosocial development (Jones, 2001).

Individuals may also find it difficult to consolidate a coherent identity following the experience of a “false self” in (hypo)mania. Others may experience a cloudy or indeterminate identity following diagnosis and have trouble negotiating a stable self-concept. As Dickson et al. (2008: 466) argue, the presence of chronic illness often creates a sense of “identity absence” and individuals may struggle with the loss of “embodied certainty”. Certainly, Power (2005: 1116) asserts that “…in bipolar individuals, dysfunctional self-organisation represents part of the recurring vulnerability of disorder.” The implication here is that lack of a coherent sense of self contributes to ongoing anxiety. Yngvesson & Mahoney (2000: 77) raise the concept of ‘broken’ versus ‘unbroken’ stories to question what happens when individuals “do not go on being the same”. The salient point is that a broken narrative of identity produces anxiety through “lack of certitude”.

It is possible that some individuals find that bipolar disorder represents a threat to their preferred identity in creating a discrepancy between their “perceived” and “ideal” self (Gorlow & Katkovsky, 1968). Such dissonance is important in order to understand how peoples’ inability to self-regulate behaviour and emotions leaves them vulnerable to confusion and demoralisation (Higgins, 1996). Markowitz (2001) demonstrates that diagnosis of a mental disorder may be interpreted as a personal failure or inadequacy and result in negative adjustments to one’s self-concept.

As Inder et al. (2008) illustrate, for people with bipolar disorder, identity is often defined by their mood state rather than by a more consistent sense of self, leaving individuals struggling with the confusion between mood and personality and the shifts in emotional and behavioural changes, leading to disconcerting feelings of self-contradiction.

In investigating how bipolar disorder is incorporated into self, however, it is equally problematic to assume a “return to an integrated self” as an aim of recovery given that the self is never completely

Page | 148

uncontradictory, rational or autonomous, particularly in the case of mental illness (Rudge & Morse, 2001: 71). Self-schemas are not unitary or static constructions - thus identity construction is typically a fluid process (Power, 2005).

The relationship between BPD-I and self-esteem is an area of focus in numerous studies. Both Hirschfeld, Lewis & Vornik (2003) and Solomon et al. (1996) found differences between bipolar patients and normal controls on measures of “emotional strength/stability”, suggesting that recovered bipolar patients may be more sensitive and less able to deal with negative feedback than normals. Research by Jones et al. (2006: 370) found that instability of self-esteem, along with dysregulation of sleep may be early markers of bipolar disorder in children. Blairy et al. (2004) investigated impairments in social adjustment and self-esteem of bipolar patients in remission for at least three months and found that they reported more difficulties in social adjustment than controls, especially for leisure and work activities, and significantly lower self-esteem levels. The authors suggest that self-esteem is an important determinant in functioning. Kernis et al. (1993) suggests that unstable self-esteem is associated with a poorly developed self-concept. Such findings tentatively support the existence of the so-called “manic defence” - the suggestion that the high level of self-esteem characteristic of the manic state may hide a fragile sense of self-worth (Winters & Neale, 1985; Lyon et al., 1999).

A recent study by Jones & Bentall (2008) found that self-esteem was highly unstable in remitted bipolar patients, supporting the hypothesis that dysfunctional self-schemas play a central role in bipolar disorder. Markowitz (2001) demonstrates that self-esteem can suffer when individuals interpret their bipolar disorder as a sign of personal failure or inadequacy, and negatively adjust their self-opinion accordingly. Self-esteem is understood to be an important determinant of the nature, extent and quality of interpersonal relationships and thus, low self-esteem can cause significant difficulties in social adjustment during remission (Blairy et al., 2004). Results of a study by Hayward et al. (2001) suggest that differences in emotional strength indicate that people with bipolar disorder may be more sensitive and less able to deal with negative feedback when compared to controls. Other studies have shown that people who have unstable or ‘contingent’ self-esteem tend to be hostile when reacting to perceived threats to self-worth (Crocker & Park, 2004: 406). Researchers have hypothesised that low self-esteem leads to a tendency to engage in “short-term affect regulation” and unhealthy coping behaviours such as substance use, gambling, smoking, binge eating, over-spending or pursuit of sexual pleasure (Crocker & Park, 2004: 402).

This chapter will highlight several themes in relation to the impact bipolar disorder has on identity development, focusing on the struggle to define authenticity, identity work undertaken in re-

Page | 149 evaluating ‘self with illness’ and the process of reconciling contradictions. Analysis will also investigate whether identity is clarified or confounded following diagnosis.

Struggle to Form Identity Narrative analysis revealed that many individuals lived with a very amorphous sense of identity. The symptoms of bipolar disorder affected self-construction and it is clear that an underlying vulnerability forms in the early stages of illness;

It was my bipolar that stopped me gaining an identity, because everything turned murky because of that. It’s hard to explain. That was why I went through so much. Cause I didn’t know who I was. Didn’t know if I was the girl who painted all the artworks when she was high, or if that was part of my illness? I might be nothing. Or like my intellect, anything I’d ever written that I thought was any quality, I’d done on a high. So I thought, “Well, who the hell am I? If all these things are taken away, if all these things that people have praised me about have been symptoms?’” # 2: BPD-I

I was a great mimic, and I still am today. I can put on any mask you wanted. I could be whoever I wanted, because I didn’t have to be me. And in the end, I didn’t know who I was, because I was so good at playing the part, you know, chronic people-pleaser. I can’t be myself, I’m so worried about what you think of me, I liked the spotlight, I liked people laughing. I needed acceptance. I mean, I loathed myself, and if you guys were laughing at me going, “Good on ya”, you were telling me I was alright – because I couldn’t tell myself I was ok, but if the blokes around me go, “You’re cool”, I’d go, ‘”Oh, maybe I am”, you know? I wasn’t comfortable with who I was. # 21: BPD-II

One of the things that’s at the front of my mind now is this whole thing about identity, and “Who am I?” sort of thing. Because you know, with the ups and downs and moods and stuff, I don’t know if this is common, but I for one certainly struggle to remember who I am, and what is normal, what the normal me is and what things I am actually interested in and what are the things that I’m not interested in. Because one of the things I find is you feel like all sorts of people. So the difficulty now is knowing who I am. Because it’s been with me for so long now, really most of my entire adult life, it’s actually sometimes difficult to separate. # 4: BPD-II

The hard thing is the not knowing. Why am I like this? What’s going on? # 21: BPD-II

It’s hard to explain. Sometimes I feel blank, in a way. I have a low self-esteem. # 15: BPD-II

I don’t know which parts of me are bipolar and which aren’t. # 20: BPD-II

It’s hard to tease out personality from disorder. And it’s because the illness is the behaviour and the behaviour is the illness. People can’t separate that, they can’t tease out all the strands. # 16: BPD-I

Page | 150

‘Real Me’ Following diagnosis, participants struggled to identify the ‘real me’ and delineate what traits belonged to them, and what were manifestations of the illness. Some found that their identity was able to be clarified following diagnosis and treatment;

My personality comes out when those physical symptoms aren’t there. My real personality. You know, the gregarious [person], just drinking and being the life of the party, you know, she’s really fun, but that’s not me. She’s not me at all. The real me doesn’t have to - when I’m not pressured by my body - behave a certain way. My natural self just comes out. It took me so long to realise that. I had to realise that excitement, or any of my intellectual thoughts, or any of my creativity, or anything that I liked about myself [were still there]. I can have those things! I could still sit down and focus and write, without having that excitement I always thought, had to come with it. I had to realise that my identity was still there. Strip away all the physical stuff, I was still there. My intellect, my creativity. # 2: BPD-I

Others felt that the heightened energy and positivity of mania was an essential part of themselves. The following example shows how, for some participants, manic energy was essential to the way one they lived their life. Loss of these aspects was thus a negative experience that affected their sense of self;

You know, it’s part of me to be a little bit manic, and full of energy. Yes, it’s part of me. It’s the real me. I had all that energy, I raised four kids and I used to play tennis five days a week and netball once a week and basketball once a week. You know, I’d be out mowing the lawns after tennis lessons. I just had so much energy. I used to enjoy getting up and out of bed in the morning and getting on with the day. Even cooking a meal I used to find quite rewarding. Now it’s just a chore, something I have to do every night of the week. Cook a meal, cook a meal. And washing, it’s just a chore, whereas it never used to bother me. I used to put on the music as I was doing the washing and vacuuming and mopping the floors. Now it’s just a tedious job to do. # 11: BPD-I

There was a stage there for quite awhile where I was thinking it’s those ups that are the natural thing, which is just totally ridiculous. Nobody can stay up for two weeks and think that’s normal, but you just do. So you just think, that’s the real me and sometimes I’m not feeling like the real me, I’m a bit flat or something. # 4: BPD-II

For some participants, it was simply the up-and-down nature of their personality which they had grown used to over time. In such cases, stabilisation proved to be a difficult adjustment after years of living with a sense of self deeply entwined with these fluctuations;

I’ve lived with it all my life, so I just thought that’s who I was. I just get on these crazy highs and lows. I didn’t think it was strange. You know, ever action’s got an equal and opposite reaction and I just

Page | 151

thought because I’d just go on these crazy outbursts, that I’d just spent the energy or whatever and then get it back, just sleep and relax and get it back again. # 13: BPD-II

I’m just used to being like this now, and this is to me normal. # 8: BPD-I

I’m usually high or low, not much in between. But that’s my personality. I’m sort of passionate Scorpio, we’re like that. # 6: BPD-I

Demarcating Illness from Self Learning to separate characteristics of self from the characteristics of bipolar disorder is an important skill in the long-term management of the disorder because it helps in the identification of warning signs. Some individuals are adept at recognising which aspects of their personality and behaviour spring from the illness;

I get irritable. I want to spend money, I argue with people. It’s not my personality. I’m not like that. I’ve very placid, very placid. And the irritability is the worst thing. I don’t like getting irritable with everyone, but it’s part of the illness. I know when I’m ill. I can tell when I’m ill. # 6: BPD-I

For one participant, strong self-knowledge was vital in determining what ‘normal’ felt like, and was a key factor in negotiating the correct level of treatment after being inappropriately medicated;

I went and saw the psychiatrist and I’m like, “Well this is a very bland 60% me – what can we do?” So I guess in that sense it was good, having been sick at the age of 27, I’ve experienced life with no illness, as an adult, so I know. I feel sorry for people who are 14 when they start because, how do they know what normal feels like? So in that sense it was probably helpful for me to have known that I could feel better than this. “What’s wrong? What’s going on?” # 9: BPD-I

Self-Contradictions This self-awareness is also valuable in dealing with self-contradictions caused by the alterations of energy levels, emotions and behaviour during illness episodes;

Because I had insight, I could deal with those contradictions of what I was doing with who I was. # 16: BPD-I

The ability to demarcate between self and illness also helps to protect self-esteem. Thus, self- awareness has a protective function in helping individuals work through some of the consequences of their actions;

I lied a lot to my husband when I was really manic and that’s not what I would do and now, I’ve learned to be able to do that. And hide parts of yourself to other people. So you know, I’d like to be able to sit down and say to someone, “You know, this is what really happened”. # 16: BPD-I

Page | 152

Now at least I can just rationalise it, whereas before, I couldn’t. So in one way it legitimises you being like that and it’s kind of it’s not your fault or whatever (- that you’re a freak–) but I just think that it is my fault. I guess it has been good to make sense of a lot of the things that I’ve done, that I haven’t understood in myself, like “Why did I do that?” So it’s helped me in that way, I suppose. # 14: BPD-II

Without understanding the source of the distress, or reasons for damaging and disruptive behaviours, negative feelings can become internalised and affect the formulation of a solid and positive identity;

I’m not always a nice guy. When I’m irritable I’m an arsehole and I hate who I am when I’m irritable and I hate who I am most of the time, because I’m either depressed or irritable. # 17: BPD-II

I would have to be dishonest to have to deal with the pain of symptoms sometimes. I would lie so I would get what I want, to make me feel better. That kind of thing. Or I would be greedy, needed something to make me feel better, to self-medicate. # 2: BPD-I

Incorporating the negative consequences of bipolar disorder is particularly damaging when it occurs as a child. Lingering feelings of unhappiness and instability often result from these early experiences of chaotic mood states and can have a detrimental effect on developing self-concept, particularly during adolescence, which is the typical age of onset. If adverse feelings, urges and reactions are not accurately understood as manifestations of the disorder, problematic behaviour is often attributed to personal deficits. This can result in an impoverished self-esteem from very early stages of the illness. Adoption of a negative view of one’s identity is particularly likely when it is reinforced by others and can take a great deal of time to resolve once integrated into self-identity;

I became very demanding in what I wanted and what I needed, because I was so desperate to have some relief from all the pain as a child. So my Dad really thought I was a brat, and I was. I remember he used to say to me, “You’re really manipulative, you’re a bully, you’re very aggressive when you ask for things.” So he noticed back then. He just put it down to character defects, or just thought that was my personality. # 2: BPD-I

Such feedback, especially when it comes from a significant other such as a parent, can exacerbate a child’s perception of deficiency. The sense of being somehow flawed is harmful, as it can create a foundation of self-doubt and inferiority well before the disorder becomes severe, making it difficult later to establish a positive and stable self-concept;

You know how you meet some people they’re really centred and spiritual and you can just see their essence in all aspects of life. But because I’m so up and down, if you took me this week and put me in one situation when I was on an up, and got me and put me in it when I’m down, I would react totally

Page | 153

different to that same situation. Always the thought of being a bit inferior, because you’re not so centred as other people. # 13: BPD-II

This internal vulnerability may have long-term consequences on coping and adaptation to bipolar disorder, as positive self-regard and confidence are essential elements in developing resilience.

Awareness of Difference The contradictions and inconsistencies inherent in illness behaviour can make it difficult for individuals to establish an authentic sense of self in line with their ideal self. The confusion that exists for individuals trying to maintain authenticity, whilst dealing with the conflicting characteristics of bipolar disorder, is powerfully described in the following extended quote. In this example, a female in her late thirties illustrated how hard it was to integrate seemingly opposing natures, highlighting the depth to which the illness infiltrates a person’s personality, behaviour and values. This case demonstrates how powerless individuals feel when the bipolar side takes over and how difficult it can be to reconcile the change;

It’s bizarre! It’s like you’re two different people. It’s truly like you’re two different people. I’ve got one side, where I will do anything for anybody and I put myself and my own needs last and I’m starting to learn how to be relaxed. When I’m good, I talk to people and make sure they’re ok and I do little things for my [family] and nothing’s a problem. However, I’ve still got that other side, just waiting to come out. I am awful, just awful. I’m awful to my family, I’m awful to my sister and all I can see and all I can talk about, is me. So egocentric. And it’s awful. I call it ‘the Monster’, that Monster just completely takes over. And it’s a different person [crying]. When you’re that Monster, it’s you. It’s like it comes over you. My sister can see it in my face, she says my face changes completely. When I’m that person, it’s in me. How can it not be me? Like, you can sit there and tell me, “It’s not you, it’s not who you are, it’s a medical condition” but it doesn’t – I can’t believe you when I feel it. That Monster is so strong and powerful, that I haven’t worked out [how to control it] it’s just going to take conditioning and time, for me to accept that it’s a condition and it’s not me. It’s not who I am, but something that I need to control.

It’s a really fine line between being the Monster and being over-confident and arrogant. I’m aware of it now, I’m so aware, I don’t want to be that person, because I know that person’s going to come down and go to the monster. But I don’t want to be that person. I just want to be the quiet one that sits back and you know, says wise things after you’ve had time to listen to what somebody’s said. And I want to be the person that can go and do yoga and just be at peace, without looking for it in all the wrong places. # 12: BPD-II

Page | 154

The notion of feeling like ‘different people’ was a common theme and suggests that helping people with bipolar disorder deal with the inconsistencies of their identities would be a useful focus of therapy;

It’s like I’m two or three totally different people, where some people are just the same. And I suppose I need to, without sounding too hippyish, to centre myself. I’ve got to find who I really am, because I haven’t really known for a long, long time. Because I can react so different to the same thing, over and over again. So I’m probably three different personalities. I don’t think I’ve ever become my own man because of the things I’ve done and the way I’ve reacted and things. # 13: BPD-II

All the things that I’ve always found embarrassing about my own personality anyway, that I’m so moody, you know, and it’s with such intensity, you know, so I can be such a nice person to someone, and then I can be the cruellest person as well. It’s terrible. # 14: BPD-II

Hard to Reconcile For some individuals, having to incorporate the incongruities and self-contradictions that occur as a consequence of bipolar disorder results in a ‘paradigm shift’ in the way they understand, experience and define themselves;

I still have to reconcile who I’m going to be. It’s very interesting, kind of an analogy to this. When I was really manic, I got tattoos, right? It’s very clichéd. But they’re not representative of [the affairs], they’re marking it, right? That’s my way of saying: I couldn’t control what happened to me, but this is my way of marking that I’m different to who I was before and I’ve done that on purpose, to say that I can’t go back and not have that tattoo now, because that happened. It marked what happened with that person. You can’t explain how devastating bipolar is. And it’s life-altering and you’re expected to just pick up the pieces and go on, as if you are the same person as before and you’re not. You are a different person. You de-construct yourself and I’m still working how to re-construct myself, after that time. And I haven’t got the answers yet. # 16: BPD-I

I’m not who I was though, anymore. I’m a different person. # 5: BPD-II

Once one does embrace their own mortality, and accept the notion of their own death, it’s a door that is open that can never be closed again. It’s a paradigm shift in one’s very ontology in terms of how they see the world and how they see themselves. # 17: BPD-II

The reality that some individuals with bipolar disorder do not ‘go on being the same’ is an important facet of the lived experience that needs to be resolved if optimal function is to be achieved. In addition, the process of re-construction and integration resulting from such a deep ontological schism can be made more difficult if loved ones do not recognise the fundamental nature of the

Page | 155 change, or if individuals feel they are unable to publically identify with the broader community of mental illness sufferers;

The hardest thing for me is that I can’t talk about it and be who I am. Because the girl that’s in my art class, that smells really bad, that’s got long grey hair that needs cutting and colouring, she smells, she’s fat, she doesn’t speak much and – I’m the same as her. There is no difference, we’re all human beings and I feel quite comfortable being in that class, there are people that don’t speak, that have got cuts all up their arms, and that’s who I am as well. And yet, I’m not allowed to be that person and still be seen as being ok. So that’s where the dichotomy is, is that you can’t be who you are anymore. And you have to make who you are, in your head, be ok, because nobody else will let it be ok.

I would feel quite comfortable saying, “I’m not feeling very well, I’d really like to go to hospital for a few days.” But I’m not allowed to say that. I’m not allowed to do that. I would feel quite comfortable at my Art Exhibition, being very proud and having people have a look and come and talk to me about it. But I’m not allowed, because anyone I knew that came would be absolutely horrified at the other people in my class. So I’m not allowed to be that person. I can’t be that person. And it’s not because I’ve got bipolar disorder. It just means that I have to pretend to be only part of who I am. And I have to downplay a lot. The best course of action is to be smiling and upbeat and not talk about who I am. # 16: BPD-I

Impaired Self-Esteem Analysis of self-esteem is also relevant to understanding the impact of bipolar disorder on identity. Many participants in this sample displayed a fragile sense of self-worth and high rejection sensitivity. It is apparent that after experiencing constant cycles of highs and lows, the quality and stability of self-worth can become significantly eroded;

I’m absolutely terrified of doing the wrong thing. It’s all to do with low self-esteem and lack of confidence. # 3: BPD-I

The biggest thing that I lost was my self-confidence. And if you don’t have self-confidence, you’ve got nothing. You know, that’s when all hope’s gone. # 8: BPD-I

I just have a low self-esteem. I do have problems with that. I seem vulnerable. I was never bullied at school, I was very popular, had no problems with friends or anything, but as I’ve got older, I have lost that. And last year, for the first time I’ve been a victim of workplace bullying and I ended up having to leave, because of it. And looking back, I feel that my lack of confidence was there for all to see. I was petrified of sticking up for myself on this one issue. # 15: BPD-II

I had no self-esteem, no confidence. I didn’t have a future. I was goin’ along nowhere. Yeah, self- esteem was rock bottom, the confidence was shattered. # 18: BPD-II

Page | 156

Living with the uncontrollable aspects of the illness and consequences of unwell behaviour can increase self-doubt and a sense of vulnerability, as well as a significant loss of confidence in abilities and plans;

It’s a really devastating condition to have, because it does wreck your life. I do have very low self- esteem, cause I’m not working and I can’t work. I do know that my potential, probably the best I could have done work-wise or career-wise or intellectually-wise has come and gone. Your self-esteem really does plummet, and your place in society is very different. Very different. # 16: BPD-I

It is therefore evident why individuals with low baseline self-esteem might find relief in experiencing over-confidence during highs.

Some individuals recognised building self-esteem was an important facet of wellbeing that was best bolstered by achieving self-validation goals;

My biggest challenge is being able to build my self-esteem up and control it. That’s what my biggest thing is. I have to work hard for it, and that means doing courses, guitar, spending time with my friends and working on it indirectly. # 12: BPD-II

I’m pleased that I got fit, that’s a real milestone for me, that’s a real achievement for me, like I was never able to run, so to be able to do all that kind of stuff felt like I’d given myself a pretty nice gift there. # 14: BPD-II

Others indicated that in order to nourish self-esteem, work on reducing the ego was required;

[I have] self-esteem now, instead of an ego. Self-esteem’s always better than an ego, ‘cause an ego’s based on nothing! There’s nothing holding it up! # 2: BPD-I

Instead of trying to bring the ego down, you bring the self-esteem up. And to get self-esteem you need to do esteemable acts. # 21- BPDII

Still others found that self-confidence grew naturally following diagnosis and adopting appropriate strategies to manage depression;

I think my confidence is a lot better than it was two years ago. Prior to that, it used to frighten me a lot, when the depression was comin’, but now it doesn’t scare me, cause I know, if it does come, I can beat it. # 18: BPD-II

However, while self-esteem was an issue for most participants, few were able to offer any specific strategies to help repair it. Thus it is clear from this analysis that chronic low and unstable self- esteem is significantly problematic for many people with bipolar disorder and for this reason emerges as important foci of intervention. Gaining more in-depth information about the domains

Page | 157 where self-worth is invested would be valuable in order to understand precisely how self-esteem is bolstered and stabilised in this particularly complex patient population.

Autobiographical Work A few participants were in the process of discovering their authentic nature, and acknowledged such “autobiographical work” (Frank, 2000) required effort;

I’m not very good at being vulnerable, I’m not very good at going, “Here, there is me, this is the real me!” I’m not very good at that, but that’s what I had to do. Yeah, find out who you really are. I’ve got a long, long journey to go. But I’m starting to find out who I am, and I don’t mind that bloke. # 21: BPD-II

Well, it’s me. Pretty much everything I’ve ever done, everything I am, I’ve had to stop and sit back and look at who I am, basically and try and re-program myself, I guess, in a way. I’m hopin’ that the medication that they put me on will just moderate me and just keep me a more controlled person. I don’t want to change who I am. I just want to be able to control who I am and control my reactions, I’d be pretty happy with that. I don’t have massive expectations of being a totally different person. # 13: BPD-II

Encouragingly, some participants were able to identify innate characteristics of self and positive features of their identity that endured beyond the illness and following a process of integration and self-reflection;

The things that I really love to do are still there. The drives are still there, in a different way, probably in a more balanced, healthy way. Your way of dealing with things doesn’t change, that’s kind of in- built in who you are. Sometimes your reactions to things don’t change, they stay the same. And, you know a lot more about yourself. You’re a much more cohesive person, because you look back and you make sense of the whole of your life, in a way. # 16: BPD-I

I’m all the good things, without the bad things now. All the things my disorder created within me, like my attention-seeking, demanding nature and dishonesty, those things came with trying to handle, trying to deal with my disorder. Those things are gone now. And I find that I’m actually all the good stuff. # 2: BPD-I

Summary Bipolar disorder causes considerable scarring of the individual’s innate sense-of-self. This analysis has demonstrated that much integrative work needs to be done if people with bipolar disorder are to establish healthy and positive self-concepts that will withstand the assaults of illness episodes. It appears that identity development is significantly disrupted as a result of untreated symptoms

Page | 158

during the early phases of the disorder. It is therefore possible that establishment of negative self- schemas and damaging patterns of psychological adjustment could be averted if the condition was diagnosed and treated earlier.

While some individuals can experience identity clarification following a diagnosis of bipolar disorder, other individuals struggle with reconciling the consequences of illness with their conception of their ‘ideal of self’. Clearly, more work needs to be done in this area to better understand the exact strategies by which identity is re-formed and a positive sense of self is built.

Page | 159

PART FOUR Vicissitudes of Living with Bipolar Disorder

Page | 160

Exploring Distress and Psychosocial Burden

This chapter sets out to examine the precise nature of the psychosocial burden involved in living with bipolar disorder. While the distress of bipolar disorder has obvious physiological and psychological aspects, its impact is not limited to sensory or emotional pain. Coping with the illness over a lifetime requires stamina, resilience and adaptability. The salient issue is to understand what is at the core of suffering in bipolar disorder in order to target more appropriate management that will contribute to positive outcome. There is also a need to focus on behaviours and vulnerabilities that drive episodes as understanding of the psychosocial mechanisms underpinning relapse are key to developing effective interventions.

Whilst it is possible to investigate functional impairment and disability that occur in bipolar disorder, the personal suffering is difficult to quantify. It is hard to measure the amount of threat and loss sustained as a consequence of the illness.32 This exploratory analysis therefore seeks to illustrate that the ‘distress’ involved in living with bipolar disorder is substantial and affects every aspect of individuals’ lives. For this reason, investigation must de-centre focus on the treatment of symptoms to make way for equally important discussions of meaning-making (Ironside et al., 2003: 171).

Bipolar disorder represents an ongoing disruption in peoples’ lives and identity development. It is known that bipolar disorder has a history of damaging social relationships (Frank et al., 2000; Meyer et al., 2004) problems related to employment and frustrated career aspirations (Michalak et al., 2007; Tse & Walsh, 2001), and has a negative impact on the quality of life (Gutierrez-Rojas et al., 2008; Agren & Backlund, 2007). In recent years, the assumption that individuals with bipolar disorder regain full functioning of euthymic states between episodes of mania and depression has been shown to be incorrect. Studies by MacQueen et al. (2001) and Olley et al. (2005) found that at least one-third of recovered bipolar patients fail to experience ongoing difficulties in occupational and social domains. Other studies have shown that significant psychosocial impairment remains throughout asymptomatic periods and that due to “...the likelihood of relapse impairment may be life-long in a substantial proportion of cases” (Coryell et al., 1993: 726). Anticipation and dread of

32 A related issue is how to adequately measure the process of adaption in bipolar disorder. Options include QOL measures, subjective wellbeing, psychological wellbeing, or clinician ratings. However, symptomatic outcome measures are limited in their ability to detect more subtle changes of wellbeing and functioning. As Michalak et al. (2005: 14) assert, an important step forward is to design a disease specific QOL instrument for bipolar disorder that works effectively in all the various phases of illness.

Page | 161

future relapse are also involved in the suffering of people with bipolar disorder (Bendelow, 1993; Bendelow & Williams, 1995).

The disorder also interferes with the pursuit of life goals and limits personal, interpersonal and career opportunities. Individuals often suffer a pervasive sense of failure and insignificance in the face of an uncertain future (Dickson et al., 2008). Delay in diagnosis may also have long-term consequences in terms of disrupting “normal social, educational or economic advancement” (Post, 2005: 5). Lessened capacities as a result of illness episodes often result in people with bipolar disorder lowering their personal goals (Charmaz, 1997).

Grief also forms part of the distress of bipolar disorder, particularly in relation to the loss of the “anticipated self” (Andresen et al., 2003) and “the ‘silent echo’ of what might have been” (Geanellos, 2005: 12). Individuals may thus have to deal with the sadness connected to broken dreams and aspirations (Hummelvoll & Severinsson, 2002) and contend with feelings of demoralization (Clarke & Kissane, 2008) and existential despair (Havens & Ghaemi, 2005).

Several key themes identified as factors contributing to specific illness burden will be discussed in this chapter, including; reduced quality of life, restricted opportunities, existential despair, loss, loneliness, interpersonal strain, dealing with the consequences of behaviour, diminished agency, fear of relapse and future uncertainty.

Totality of Affect Bipolar disorder has a comprehensive affect on all aspects of peoples’ lives. Thematic analyses of the transcripts reveal that a major component of distress relates to the totality of impact;

It’s affected every part of my life. It’s affected every relationship I’ve had, it’s affected my children, it’s affected my parents, it’s affected my brothers. It’s affected my work, it’s affected my financial situation. So it’s not like it just plays on one part of your life, or one aspect of your life, it does everything to every part of your life. # 13: BPD-II

Managing it, and having it and knowing that you’re up and down and trying to be one step ahead and knowing that even though you’re on the medications, that one time, one day, one month, that it’s very likely that you’re going to fall in the shit again, even if you do all the right things. It’s living with the side-effects of the medication, it’s trying to keep it private. Everything. Everything, everything! Psychologically, emotionally, spiritually, the whole thing, everything’s off the table. It’s a really devastating condition to have because it does wreck your life. I do have very low self-esteem, c’ause I’m not working and I can’t work. I do know that my potential, probably the best I could have done work-wise or career-wise or intellectually-wise has gone, has come and gone. # 16: BPD-I

Page | 162

I’ve often thought, “Why did I get a mental illness?” You could’ve taken a leg away, I could have just dealt with that much better than a mental illness. Cause a mental illness just gets at your whole, especially someone who’s interested in studying, your mind and things like that. So to lose access to those things, when you’re that way oriented, is just the worst type of illness, I think. That’s the real thing, it really hits you where it hurts, really gets you in your most treasured experiences, I guess. Now I don’t have a career, and I don’t have much money, and I don’t have a partner, and I’ve just managed to do it all, and I’ve got a mental illness and I’m still doing it. Just don’t look down! [laughs] But you know, it does show you that you can get by, on the very minimum that human beings need, in every possible way, cause you get deprived in every possible way, cause of just the onslaught of things and the effects on your life. # 9: BPD-I

Coming to terms with the sheer enormity the condition has on all facets of life is made more difficult with the realisation that optimal coping typically necessitates daily symptom management, over a lifetime.

Reduced Quality of Life Participants routinely discussed their illness in terms of reduced quality of life. Previous research has identified this as a significant factor (Agren & Backland, 2007; Gutierrez-Rojas et al., 2008). The following excerpts illustrate the extent of disability, incapacity and helplessness that is often incurred;

It’s very difficult for me because I can’t walk, I can’t stand up, I can’t shop. There’s no way I can even get on a bus or a train and I can’t stand. So I’m very limited. I got a pension in 1995 and I’m still on a disability. I used to read a lot, but now I can’t, I just can’t concentrate. That’s part of the illness. When I was really bad, I used to sleep in the bed and had cockroaches in it and I was living on bread, jelly beans and water. I couldn’t look after myself. # 6: BPD-I

I can’t believe this story is about me. I can’t believe it. It’s like this life that I had planned for myself is not going to happen. But you know, this is reality. I thought at the time, that I was losing everything. I hated [my husband], I hated the kids, I hated life. Which is just not me. It can affect my quality of life. What I viewed for myself, I suppose, is not happening. So I’ve had to accept that. # 5: BPD-II

My quality of life has been shattered by the condition. I see my life as a series of failures. Bearable just means I can bring myself to eat my next meal. And that’s no way to live. Day-to-day living just grinds away at me and wears me down. I’ve been unemployed for about 6 months now. In the last couple of months, I’ve been living hand-to-mouth, basically, paying my rent, paying my health insurance, and sometimes eating. # 17: BPD-II

Page | 163

[I feel] a lot of deterioration in abilities and drive. I’ve put on a lot of weight over the years, I’ve lost a lot of interest in activities, I’ve slowed down a whole lot and I don’t like the way that the medication makes me feel. I feel like I’m drugged out, and not very happy about that. # 11: BPD-I

Loss and Restriction Related to this reduction in quality of life is the experience of loss and restricted opportunities. Managing the illness in order to reduce the risk of relapse typically requires many significant adjustments, particularly in terms of reducing stress and maintaining a strict lifestyle routine, which will be discussed later. Many participants lamented the fact that they were not able to pursue career or study options, as taking on these demands often precipitated illness setbacks. They are thus left in a state of idling and, as Lohne & Severinsson (2005: 287) suggest, it is often these “unexpectantly acquired limitations” that triggers the process of suffering;

I’ve restricted myself so much too. For so many years, I’ve just accepted that I just work part-time , nothing that would really extend me. And it’s more like, for the last five years or something, I’ve felt that all I do is manage my illness. I’m always trying to juggle things, for my illness. I do feel like I was treading water for a long time. I mean, my illness has kept me back. # 15: BPD-II

It’s kind of like a holding pattern. When I take a chance I get sick again. So it’s just one of the real difficulties. It’s a changeable sort of illness. Maybe I’ll have a relapse that’s really comes out of nowhere, that is worse? Maybe I will have to quit a job in the future because of it? So even after nine years, I don’t know. I still don’t know the answers to those questions, and you just have to work out your ideas around failure. Being prepared to try and fail. # 9: BPD-I

Coping with bipolar disorder not only disrupts the pattern of daily living, but also interrupts the completion of life goals;

It also means things go on hold, things that you have happening in your life might have to be disrupted, or might not happen because of this illness. So it’s an interruption to things. Even friendships. # 7: BPD-II

It’s bullshit, everything you read, “Oh yes, it’s all smart, arty geniuses”, you know, it’s fucking crap. It’s just silly. Puts pressure on you? It does. “Oh well, I’d better be good!” [laughs] I haven’t written the great Australian novel, I haven’t done anything except create chaos and angst. # 14: BPD-II

The necessity to readjust life goals and future plans can have significant consequences on people’s lives, such as not being able to have children due to the reality of long-term management of the illness, as described in the following case;

Page | 164

I may be reviewing some of my earlier hopes and thinking, “Well, is it all really necessary?” I mean for me, I’m finding it difficult at the moment, the not having kids things. And I think the bipolar has been a really big part of that. In terms of influencing what sort of partner I chose. And even now, in terms of not letting me get on and get fit, and not letting me get ahead with my career, yeah, I don’t even have time to think about those issues. I just spent three years cycling. So I think the real likelihood is that I won’t have kids. So I think that probably is the major, significant thing. I’m sort of used to not having a career now. Terrible, isn’t it? # 9: BPD-I

Understandably, the theme of loss was prominent in many accounts, particularly the concept of wasted time, and regret for negative psychosocial consequences resulting from delayed diagnosis;

It makes me melancholy, looking back over photos because usually I just feel that I’m doing nothing but getting older. I’m wasting time, I don’t have anything to show for it that I’m proud of. My 20s were just a waste, were destroyed by, ruined by my depression. I’m now too old to have some of these opportunities, they’ve passed me by. # 17: BPD-II

I don’t ever want to get to the point where I’m just marking time again. # 20: BPD-II

I never acted like a normal teenager. I think, if I had been diagnosed, I would have been able to study, and that probably would have made a big difference in my life, because I would have been around a lot different people. I feel like I have wasted so many years of precious life. # 12: BPD-II

I probably spent, oh God, I could easily say, ten years of my life, just wasted. You know, just on this massive merry-go-round, just drugs and alcohol, highs and lows, and anger and issues. Just, basically along for the ride, you know, with no thoughts and control, with nothing. That was probably really, the point of my life where I probably should have been my most productive, and I was just, out there. You know, alienating everyone and just being a pest, you know. That’s a massive merry-go-round, of hurt and pain and hurtin’ people, and everything. # 13: BPD-II

I really feel that my 20s were basically just a rollercoaster of bipolar disorder. With very little intervention into it, so just raging at its full. # 14: BPD-II

I’ve always been focused in my life. And I couldn’t understand what was taking it away. And I feel ripped off! I feel deprived, I suppose, of having enjoyed my children, and my family life. # 5: BPD-II

That was my youth. # 6: BPD-I

Being sedated for ten years…I lost so much time. # 8: BPD-I

I...feel...broken. My spirit was broken. I feel like a broken man and I don’t know if I can be fixed to the point that I would ever realise whatever potential I have. # 17: BPD-II

Page | 165

All this stuff that I could have known, or could have done differently, thought about differently. It just would have saved me three years. All that time I could have been travelling. All the time when I was refusing my medication and not understanding my disorder. Yeah, it was time lost and I don’t want other people to lose that time. After nineteen years of not being diagnosed, you shouldn’t deserve to lose another three years. # 2: BPD-I

Analyses of these issues implies that individuals with bipolar disorder could benefit by readjusting attitudes towards failure and by working through the feelings of grief associated with lost dreams. Encouragingly, these examples also suggest that some of the distress involved in bipolar disorder could be alleviated with earlier diagnosis, by avoiding unnecessary years of chaos, poor decisions and regret.

Dealing with Episode Aftermath It is evident that the experiences during episodes of mania, depression or psychosis leave an enduring psychological scar. Resolving the aftermath of episodes therefore proved to be a significant issue that required time and patience;

It is a bit like that feeling where you wake up and you don’t know whether something’s been a dream or real. You get a bit insular. It takes time for the fears to go away. So it’s quite frightening at first, it was hard to make sense of. # 9: BPD-I

It’s still not completely resolved in my head. You’d think, “What was that all about? It was so real, it couldn’t have been fake, there must have been something in it.” So there’s these unresolved issues and you keep thinking about it. That’s the problem. You just keep mulling over the whole episode, it’s really quite annoying, it just doesn’t go away. It’s like your brain trying to make sense of it, I think. # 10: BPD-I

I was scarred, a bit like coming out of a war zone. # 14: BPD-II

The cognitive disorganisation that follows episodes often results in people losing faith in their own abilities and doubting their capacities and self-worth. Such vulnerability can be quite disruptive on peoples’ ability to go about their daily lives;

I can’t organize to go on holiday, because I don’t know what kind of mood I’m going to be for that month. I can’t really organize to go and have coffee with somebody next week, had to cancel three coffees this week. So, I can’t stand that side of it. # 12: BPD-II

Suddenly you’ve got to take one big thing into account for all of those decisions, just normal life decisions that everyone else just makes, going along. # 14: BPD-II

Page | 166

Decision-making abilities were also impaired by recurrent episodes, and were a source of ongoing regret for some individuals;

If I thought too long about the different decisions that I’ve made that may or may not have been the right ones, things that have been affected dramatically by my mood, may or may not, have been as a result of the treatment of the particular drug that was on at the time, it’s very, very easy to get upset! # 4: BPD-II

When it comes to making life choices, I no longer have any confidence in my decision-making ability because I feel like I make all my choices for the wrong reasons. # 17: BPD-II

Uncertainty and Fear of the Future Fear of relapse was also highlighted as a significant element contributing to the enduring burden of bipolar disorder. Participants acknowledged living with a ‘free-floating’ sense of dread that was wearying and greatly constrained their ability to look to the future with optimism. This shows that the limitations that bipolar disorder imposes on people’s lives are not restricted to the present, but are also projected forward. Resolving such apprehension is particularly relevant, given that anxiety is a common trigger for relapse.

Analyses shows that individuals do suffer as a result of fear of relapse and the innate uncertainty of the illness;

I have felt really desperate. Because, to be honest, sometimes when I do do the exercises, and I do do the meditation, I’m doing everything right and I get depressed, that really, really concerns me. It, it can bring me to my knees, sort of thing. I like to think that there was something that caused it, or I worked too much, or the anxiety was too high. But when there doesn’t seem to be anything, that really does...I feel a lot of despair. # 15: BPD-II

I think a major part of this illness is you just have this huge uncertainty. You just don’t know what it’s going to be like for your future. # 9: BPD-I

I get very anxious about getting sick again, it’s like sort of fear of the future. # 5: BPD-II

Enduring One of the most difficult aspects of coming to terms with bipolar disorder for the majority of participants was recognising that depression was going to recur;

The main thing that’s upsetting is that I just feel like it’s a life sentence. I just feel like the first thing you find out with this disorder is that you’re going to suffer depression a lot more times [crying] for the rest of your life, you know? That’s the worst thing. # 14: BPD-II

Page | 167

The countless times I’ve been depressed and thought, “Why am I even bothering?” I just know there’s going to be another time where I’m thinking the same thing. What’s the point? # 17: BPD-II

It’s when you know, the first day a depression has come, and you’ve spiralled, and you know, you’ve got to endure it. And you don’t know for how long, but you’ve got to endure a depression. That to me is the hardest, nothing is harder than that. Nothing. That’s when I want to die, so badly, to get out of the pain. # 15: BPD-II

The concept of ‘endurance’ (Morse, 2000; Ohman et al., 2003) is thus revealed to be relevant to our understanding of the suffering of bipolar disorder and an area worthy of further research.

Loneliness Another theme germane to the phenomenology of distress is the experience of profound loneliness. It appears that loneliness can arise from many factors, such as lack of social support, being distanced from the community due to inability to work, or lack of understanding through communication difficulties (Hummelvoll & Severinsson, 2002). Little et al. (1998) suggest that inability to communicate the nature of one’s distress is a significant contributor to disease suffering. The following quotes illustrate the alienation that can occur living with bipolar disorder;

It’s a weird, lonely kind of world you end up inside your own head. That’s probably where you try and distract yourself with other things, to try and block that weird tangent that you can go down in your own head. That’s probably the scariest thing. You could get stuck and lost in your own head. # 13: BPD-II

Because when it’s in your head, [you can’t] share with anyone, and that’s what’s unsettling. Because everybody’s on a different plane, and you’re alone. That’s what’s scary, I think. # 10: BPD-I

I do get very, very depressed and distressed. It’s very difficult for me to live like this. I mean, I’m a very solitary person, but I hate being lonely all the time. And I am lonely most of the time in my flat. # 6: BPD-I

It is that you feel that you’re alone, that no-one else understands or feels what you feel, so how could they know? # 20: BPD-II

I would be happy to talk about it, and I suppose this is one of the things that people get out of talking to you; people don’t want to hear about it a lot, so yes you can talk about it and yes, I do talk about it but basically what I find is that it’s a real conversation stopper. # 16: BPD-I

Page | 168

Interpersonal Problems It is known that incidence of interpersonal problems is highly correlated with bipolar disorder. Many participants in this sample had experienced relationship breakdowns and acknowledged that their out-of-control behaviour directly contributed to the fallout in intimate relationships;

Just the pain, and the damage you do to the people you’re supposed to love the most. I was the one doin’ the worst to them, you know. If someone else had done it to them, you’d just blow up big time and go off. You’re the one doing more damage than anyone else. All the people that you love and you’re mates and everything, you end up pushing away. And then all that sort of snowballs, everyone’s stepping back all the time, because of the way you react or overreact. The marriage was just about destroyed, the kids were shattered. # 18: BPD-II

My husband was just making his way and it was a big strain on him, me being so sick. And I went downhill very quickly and made an attempt on my life and that finished things as far as he was concerned. It’s a very difficult illness for people to live with. My second husband was marvellous and we were married for twelve years, but it was too hard. I used to go up and down and eventually he fell in love with my best friend. But I can understand it happening, they were drawn together because of my illness. It was inevitable. # 3: BPD-I

I seem to always want to leave [my husband] every time I’m manic. It’s not that I’m miserable, but I’m not that happy, but that’s part of my bipolar, the reason why I’m not happy. And I try and think that I could be happier with someone else, and when meet someone in hospital that’s young and exciting and gorgeous and has similar problems to you that you can relate to, it’s hard not to fall in love with people in hospital, it really is. # 11: BPD-I

My first wife stuck it out for a little while but she really decided that enough’s enough, didn’t really sign up for this. So I think [my illness] was directly related to her leaving. # 4: BPD-II

When you’re a depressive person, you can cause a lot of damage to the people around you, intentionally and unintentionally. I don’t have much that I want to remember from then. It was either losing friends I’d had for years, due to petty trivialities, or it was, literally I spent two years where I didn’t socialise with anyone at school. # 20: BPD-II

[My wife] had given up on me, she’d kicked me out. And I gladly left because I couldn’t stand the thought of having the children seeing me deteriorate. Yeah, I’ve got a lot of work in that area to make up to those kids. My eldest one saw a lot of stuff that she shouldn’t have to have seen. I’ve got a lot of work to do to repair my relationship with my wife. # 21: BPD-II

The extent of damage that can occur in interpersonal relationships is thus significant and lends support to the utility of family-focused therapy in the treatment of bipolar disorder. An additional issue is learning to deal with the consequences of actions following a high;

Page | 169

The other thing that is difficult is the consequences of your actions. My marriage survived [the affairs], but only because my husband doesn’t know. So I’m very lucky. But, it frightens me, because if I ever got that obsessive again, like the consequences, the outcomes wouldn’t be so fortunate, I think. # 16: BPD-I

Problems Sustaining Friendships A significant proportion of the narratives dealt with impoverished friendships in particular. These examples show that people with bipolar disorder find it difficult to sustain and nourish friendships, and that relationships can be damaged as a direct consequence of illness behaviour, or misunderstanding about the reality of mental illness;

I just don’t have friends. I just don’t want to get close to people, because I suppose I know that I’m a bit of a special case. I suppose I just know that people won’t understand me. And I find so often that girls I meet, that are my age, they’re just twits! I’ve become a little bit judgmental of people who don’t have that spiritual thing like I do, and they seem a little bit shallow. I just don’t think that friendships have as much meaning as I’d like them to. # 2: BPD-I

[One friend] just cut off contact after I got high. There was bad behaviour on my behalf and it was all a bit yuck. So it does just make you realise things. There are some things in my life that bipolar does…. [pause] I tried really hard to fix that friendship, I called and left messages and apologized, but then you have to go, “It’s not my fault I have bipolar.” It’s just one of those things. # 9: BPD-I

I don’t have too many people over, I don’t have a lot of friends. I’ve got two girlfriends and they both moved as far away as they could from me. # 11: BPD-I

I never made any really good friends. I always thought, everyone else is just relaxed and had friends, and I kind of felt I really had to work at it. Some friendships have just dropped off because people just don’t understand. Some people really get it wrong, or they treat you differently. # 16: BPD-I

For somebody like me, at this point of my life, I don’t actually have a huge resource or a huge group of mates, and that’s really because of me, at different times, I just didn’t have what I needed to give friendship to somebody else. # 4: BPD-II

It’s an interruption to things. Even friendships. # 7: BPD-II

I’ve lost a lot of friends, I don’t have many friends left at all cause I’ve upset them all durin’ the course of our time together. You end up quite isolated from everyone that you know. Some of the things I’ve done have just been unacceptably outrageous and it just pushes people away. # 13: BPD-II

Work-Related Issues Bipolar disorder also impacts on work functioning, namely in the ability to acquire and sustain work, or maintain a position that is in keeping with educational level, skills or high career aspirations.

Page | 170

Individuals often need to take sick leave to recover from episodes of illness, which inevitably impacts on work function and continuity of work history. Interestingly, it was also found that personality factors, such as belligerence, arrogance, antagonistic attitudes, inflexibility and problems with authority appeared to contribute to work-related conflict and incidences of firing;

With depression it was just impossible. So I resigned and took 6 weeks off and really just took the first job that came along, ‘cause I didn’t want a gap in my CV. # 9: BPD-I

Now that I’ve got a mental illness history, you can’t actually insure yourself against loss of income. So you’ve got to do the work, or you don’t get paid. # 10: BPD-I

Only once or twice have I ever left a job of my own volition. Normally I’m made redundant or fired or pushed out. I was bored and I got frustrated with things that didn’t work and I got very angry about incompetent management, as does everyone, but I really took it to heart and ended up shooting my mouth off to the wrong people. It’s normally inevitable that I’ll say something, because it’s very difficult not to have opinions about things. # 17: BPD-II

I’ve quit several, been fired from a couple as well. But I can’t deal with office work, I cannot deal with politics. # 20: BPD-II

Summary The implications of the enduring distress and psychosocial burden inherent in the lived experience of bipolar disorder are that individuals require more access to healthcare and therapeutic support across the illness life-span. Daily and long-term management strategies are needed, as well as more integrated and consistent follow-up care. Individuals with bipolar disorder would undoubtedly benefit from counselling related to interpersonal and work-related fallout, and help in dealing with issues such as grief stemming from loss, reduced quality of life, loneliness, altered self and interrupted life goals. Considering the substantial disease burden bipolar disorder places on the health care system, it is evident that too little attention has been paid to managing the suffering incurred between distinct episodes of illness and crisis. However, this analysis suggests it is likely that rates of relapse could be significantly reduced if patients were offered more targeted, preventative follow-up care. Access to education programs and provision of information, particularly in relation to recognising early warning signs and identifying triggers, would also greatly assist individuals in taking control of the self-management process and reduce the likelihood of relapse.

Page | 171

Influence of Achievement Striving and Goal Setting

Research has established that engagement in goal-directed activity and a focus on achievement are associated with the risk of onset of mania (Jones & Bentall, 2008). Despite significant periods of illness, many individuals with bipolar disorder do have periods of high accomplishment and are often motivated by a desire for success (Johnson & Carver, 2006). It is known that individuals with bipolar disorder experience above average interpersonal and academic functioning before illness onset (Johnson, 2005). Examination of goal-setting traits is therefore relevant in order to understand how such variables predict manic proneness. Lozano & Johnson (2001: 110) found that specific personality traits, particularly the ‘achievement striving’ facet of High Conscientiousness, predicted increase in manic symptoms. They argue that elevated achievement striving found in bipolar individuals provides “one piece of the puzzle” in understanding vulnerability to relapse, as “…stimulus-seeking, driven, workaholic characteristics... may bring about situations that trigger manic episodes…” As Lam et al. (2004: 198) corroborate, an achievement-oriented temperament “...may lead to overworking, sleep deprivation and irregular routine that intensifies risk…”

Many interventions target “...the background of high goal setting and over-emphasis on accomplishment...” by helping individuals monitor their expectations for success (Johnson, 2005: 257). Regulation of the circardian rhythm through routine stabilisation and limitation of excessive goal pursuit are typically recommended. It is therefore beneficial to examine how high goal-setting impacts on behaviour and is implicated in the dysregulation and schedule disruption that appears to trigger manic episodes. As Meyer et al. (2004: 173) states, the;

...goals people formulate and pursue, whether they choose challenging or easily attainable goals, and whether they construe goals as important, pleasurable, or stressful may all contribute to the onset and course of mood disorders.

It has long been known that high levels of accomplishment are associated with mood disorders. Bipolar disorder is more likely to be correlated with higher levels of professional attainment and socio-economic class, as well as above-average aspirations related to fame, money and political influence (Johnson, 2005). Elevated drive for attainment and a focus on ambition and value achievement have been clinically observed in individuals with bipolar disorder and their family.

Page | 172

Studies have shown that bipolar disorder is over-represented in individuals working in creative and high profile domains (Johnson & Carver, 2006; Jamison, 1993). Johnson & Carver (2006) sought to examine whether individuals vulnerable to mania set elevated goals in their lives using a measure called the ‘Willingly Approached Set of Statistically Unlikely Pursuits’ (WASSUP). Results suggest that individuals with bipolar disorder do set elevated goals and that mania proneness relates to pursuing aspirations of popular celebrity, wealth and political influence.

It is not evident whether the tendency to set extrinsic goals is related to elevated confidence experienced during (hypo)mania, coping styles, or impaired self-esteem that results in the need to seek external rewards and validation. Johnson (2005: 254) proposes that elevated goal striving is correlated with extraversion and that unrealistic confidence fuelled in mania can lead to “...excessive behavioural involvement in ever-higher goals...”

It has also been suggested that vulnerability to mania is related to “excessive engagement of the incentive system” (Johnson & Carver, 2006). Meyer & Krumm-Merabet (2003) suggest that the attributional style of the hypomanic temperament, which has a high expectation of future success and achievements, may interfere with the regulation of affect and motivation. Recently, researchers, such as Meyer et al., (2007) have turned their attention to investigating the behavioural activation system (BAS) in order to understand the neural basis for the incentive/reward processes that may underlie the pleasure individuals with bipolar disorder derive from reward-pursuit and goal attainment.

Some researchers have argued that continual goal and risk-taking behaviour are pursued in order to increase positive affect (Jones & Bentall, 2008; Power, 2005). Power (2005: 1109) suggests that individual with bipolar disorder have higher emotional responsiveness and reactivity to reward which leads to the “...activation of positive goal-attainment schema...” However, the author also makes the point that goal-seeking activity does not necessarily lead to positive emotions given that mania often involves dysphoria, anxiety and irritability. Negative cognitions and emotions can also be incited if there is a failure to meet a set goal (Johnson & Carver, 2006: 391). Increased emphasis on goal pursuit is not therefore necessarily related to BAS. As Johnson (2005: 250) points out, goal- setting tendencies may have adaptive or maladaptive consequences. Thus, it is important to understand how goal striving is differentiated in individuals with different levels of relapse and severity of episodes and what factors mediate such relationships.

There is also a need to consider possible demoralisation issues that can occur following “altered life expectations”. Individuals with bipolar disorder can find their goals modified over time, with the

Page | 173

interruptions of recurrent relapse. This often results in people unconsciously “setting the bar low”, in terms of life goals and expectations, to match lessened capacities (Goldberg & Harrow, 2005; Carder et al., 2003). As Goldberg & Harrow (2005) state, this risks forming a “new baseline or functional equilibrium state”, thus, it is important to explore how people with bipolar disorder, high in achievement striving, come to terms with possible “identity tradeoffs” in line with an altered level of homeostasis (Charmaz,1997).

This chapter thus sets out to examine the high goal-setting tendencies and the effect this elevated focus on achievement has on illness course. A prompt question was used to elicit discussion in this area: What were your hopes and dreams for your life when you were growing up?

Seeking Validation High aspirations certainly surfaced as a major theme in the narratives. For some individuals, the drive to achieve was fuelled by a need to be recognised. External validation thus appears important for those whose sense of identity is fragile in association with their struggle with bipolar disorder;

I always dreamed of having a big career that would give me an identity. I always wanted to do really big things. All the ego stuff. I used to want to be an actor – Of course, you’ve got bipolar disorder you want to be a bloody actor! [laughs] # 2: BPD-I

I had such high expectations that I was going to be successful - whatever that meant! # 4: BPD-II

Because I haven’t had much comfort in my life I wanted a nice home for myself, for myself and my family. And I always enjoyed the recognition that I used to receive, even though it was only on a small level, in my professional life. # 5: BPD-II

I was always wanting validation, so I was always wanting to be the best at something and write a best- selling Australian novel. It’s a real drive. I didn’t care what it was about, I really wanted to write a book so people would say, “Oh it’s wonderful and you’re fantastic” and I wanted to win prizes for it and when people asked me what I did, I wanted to say, “I’m a writer”. I was going in short story competitions all the time and I would fully have the expectation that I was going to win. And when I didn’t, I was devastated. And I took it quite personally. # 16: BPD-I

For some, the seeds of these ambitions are often created following less than ideal experiences at school or in the home environment. In such cases, it may be that high aspirations are aroused by a need to bolster self-worth, or to break a dysfunctional cycle by establishing success that can be externally verified;

My ambitions exploded into unrealistic territory in High School when I guess I retreated into my shell as a result of the bullying. I was imagining me becoming a millionaire and leader of the world and you

Page | 174

know, Saviour of mankind. [G]etting a Nobel Prize, the richest man in the world and all that. Fantastic fantas[ies] about the glorious life I would lead and how I was going to change the world ... or whatever, consumed me, and sustained me, I guess, through High School, when the real world was quite discouraging. I wanted to be a great Physicist; I had all these great dreams. Ambitions. Things I want to create. I do crave achievement. # 17 BPD-II

I really came from a very rough town type of background. I went to a horribly rough school, and look, I guess I was always a sensitive, introspective, thoughtful sort of person, and in that sort of environment it was pretty yuck. So the one thing I can remember, even when I was quite young, early teenage, is this money thing. I just wanted to be successful and have a nice job and drive a nice car and have a nice house. # 4: BPD-II

The compulsion to succeed is usually experienced as forceful drive, or sense of striving;

I used to be very - what’s the word? - chasing success. What’s that word called? Strive to, to… perform. And be successful. In every facet of my life. So I wanted to be a private practitioner, in private practice, be able to work, have kids, have a nice home, you know, have a life that was very full of achievements. That’s the word I’m looking for! Achievements. # 5: BPD-II

Underneath it all there is a drive to be the best. If I can’t be the best and really competent, then it’s really hard for me to want to do it at all. # 16: BPD-I

Role of Perfectionism For some individuals, it is their sense of perfectionism that is the quality underpinning their strong achievement orientation;

I think I’m a bit of a high achiever and in a way, sort of a perfectionist. When I started my field I really strove hard to get… all these proper awards. I am driven and try to achieve the best results. That was part of the frustration that led up to the first [episode]. If you’re frustrated in your drive for it, it can get quite stressful. I think that’s what happened to me. If I set down a path I try to achieve it. I try to sort of hit one goal after another. I get anxious about little things that don’t go right. # 10: BPD-I

[I am]energized towards achievement-related things. The world wasn’t big enough to be in Sydney, Australia. You had to go and work in something where I can have a big worldview of everything that’s going on. # 9: BPD-I

I’m a perfectionist when it comes to my work. If it doesn’t feel right, it just doesn’t work. And I, for a long time, assumed that everyone else was just as hard on themselves as I was. This is probably why I get rid of all the writing that I write, because I don’t want to write just another book, do you know what I mean? Mediocrity is the worst thing # 20: BPD-II

Page | 175

I do have high expectations of myself and those around me. Particularly comes to light in the business and professional sense... I left [one] job ‘cause I was thinking I couldn’t do the job anymore to the level of expectation I had. # 4: BPD-II

Oh, if I can’t be the best and really competent, then it’s really hard for me to want to do it at all. # 16: BPD-I

In my sport I was very competitive. I wanted to be the best. Always felt that I was the best. Best water-skier, best snow-skier, best table tennis player, best runner. I used to love taking the boys on, ‘cause they were more up to my par than the girls. Yeah, I was too good for most of the girls. # 11: BPD-I

What is particularly interesting to learn is that one participant, who struggled all her life with a compulsion to be the best and work hard to create an above-average financial situation for her family, found the drive to achieve was alleviated when she began taking the correct medication;

Before I was on this new drug, which has just made such a difference, I was still back on that whole, “I need to get back to work, because I can’t bear being at home, I’m bored out of my mind! I have no life! I need to get away. I need to get out of the house, I need to be someone.” But since taking this drug, and this is only been 6 weeks, it’s almost like, I’m quite happy just to actually, be a mother. And just be less driven and critical of myself. And I’ve accepted, you know, that our house is our house as it is. And that’s it. # 5: BPD-II

This is highly significant, as it indicates that the motivation behind the striving could also be driven by excess energy of uncontrolled bipolar disorder, rather than perfectionistic tendencies. This points to the fact that once the unsettled energies are evened out, individuals may have the best chance they have of letting themselves enjoy the moment and, consequently, life as it is;

A lot of that has completely settled, so I think that was part of the mania. # 16: BPD-I

Understanding that having your book published is something that is ephemeral and the knowledge that you have peak experiences, but they don’t last. You have to enjoy the moment, you know. And yet, there is a part of me that would really like to still [win awards], but I’m much more realistic about my own abilities and skills and whether I actually want to do it. But yeah, underneath it all there is a drive to be the best. # 16: BPD-I

High Goal Setting However, the danger for individuals with bipolar disorder is that during (hypo)manic episodes, confidence can become inflated and unrealistic, leading to genuine problems caused by over- estimation of abilities;

Page | 176

I think you can over-sell yourself, over-aspire to what your capabilities are. # 16: BPD-I

The older I get, the less sure I become about what I want to do. Because I don’t know when these ambitions were forged, in reality or forged in the delusions of euphoria. I’ve lost confidence in my decision-making ability and that’s why, for the last three years I’ve just been working shit jobs. My decision making is flawed now, because I feel I do things for the wrong reasons, for reasons of false pride or unrealistic ambitions, and I don’t know where to go in my life, because everything has been a disaster and I’m left with having no faith in my own decisions I make. # 17: BPD-II

Thus, whilst cultivating above-average expectations for career or standards of living proves to be a driving force for many participants, in the longterm this urge can develop its own problems and frustrations;

I do have very low self-esteem, because I’m not working and I can’t work. There’s no value placed on not working and not achieving, so when you’ve got a high drive to achieve, because you’ve got bipolar or you’re a perfectionist or whatever, then it’s really hard to reconcile that. # 16: BPD-I

Certainly the psychiatrist pointed out, he said, “One of the reasons that you find it potentially very, very difficult to fulfill a status quo kind of contentment, happiness, is because of the incredibly high standards or high level of expectations that you put on yourself and what life in general is going to be like.” I absolutely, completely clicked when this guy was talking about my expectations about success at work, and my expectations about friends and my expectations about the interests that I should have and the hobbies that I should have and all these type of things. The risk you run is that your view of what life should be like is actually very, very high and therefore, you know, the moment that you fall short of that, you run the risk of losing trust and confidence in yourself that is not particularly helpful. # 4: BPD-II

Well, I always put it down to the fact that I always try to conduct myself in a certain way, you know. So, it’s probably the fact that those people don’t live up to my expectations of myself, then I think that sort of ticks me off. I’ve set my own standards, I haven’t tried to live up to anyone else’s expectations, but I think my standards, if I fall short, probably make me crankier than anything else, than fallin’ short of anyone else’s standards, kind of thing. Just, it’s really hypocritical when ya step back and look at it, because the standards I expect myself to live up to, I get cranky if other people don’t live up to my standards, and then I go off on one my weird and wonderful anger tantrums and stuff and I just crucify every standard set by anyone. You know? # 13: BPD-II

There is an indication, however, that success in achieving goals is probably only possible once the erratic energy of bipolar disorder is brought under control. One individual’s story shows how goal setting can become ineffectual when the aspiration to achieve i undermined by distractability;

Page | 177

At some point what I realised years ago was that I was getting nothing done with my life, yet there were all these things that I wanted to do. I wrote down a list of the half a dozen things that I want to achieve, dreams. And I would prioritise them. And I’d think, “Ok, that one’s at the top of the list”, things like guitar or writing a novel or becoming fluent in some programming language, getting into studying psychology. And after writing down this list and realising what was at the top of it, I would then decide, “Ok, I’m going to apply myself to that.” And I would go back to the list a month later and realise, that the thing I’d been thinking about as my top priority, is something else on the list, or maybe something that’s not even on the list. # 17: BPD-II

It was apparent that, for many participants, the innate drive to perform, lead and achieve was often hard to reconcile with restrictions typically encountered in the workplace. This may be the underlying reason why many of the individuals interviewed expressed a desire to be their own boss, or in a position of power where they were free to make their own decisions. It is intriguing to speculate whether the above-average leadership abilities of many individuals with bipolar disorder are motivated out of a desire to achieve autonomy;

I get really frustrated, and I know it is because I’m a high achiever. So that’s why too, I can’t work for anyone now, I’d probably get sacked, I’d abuse the crap out of someone, and tell them something they didn’t want to hear, so that’s why I thought, “I’d have to work for myself.” # 8: BPD-I

[It’s] not filling a potential, not allowed to do what you think you could do best that stresses [you]out. That was part of the frustration that led up to the first [episode] was that I was in a strange position, where I wasn’t in a very high position in the bank, and there were heaps of other boofheads above me, that were putting, “You’re not doing it right” sort of thing to me. And I kept saying, “You’ve got to clear the path above me, I cannot do my work and be hassled non-stop by petty bureaucrats.” And that’s what was frustrating me and annoying me. I’d need some real power, because you want to achieve the best, but if you’re frustrated in your drive for it, it can get quite stressful. # 10: BPD-I

I could go back and volunteer, but I couldn’t be in charge and in control and I couldn’t tell people what to do, so that would be too difficult. #16: BPD-I

I’ve had a wonderful working life. It’s just my ego that gets in the way. I’m not humble about what I do. I’ll trumpet my success, in your face. I’ll sit back and watch so-called managers and engineers make mistakes and step-in and save the day, rub their nose in it. # 21: BPD-II

Page | 178

A significant number of participants, however, did not hold any high ambitions or expectations for their lives. There did seem to be a link between those who had no firm goals and the later development of significant drug and alcohol problems. This association would warrant further research.

Dealing with Failure It is also apparent that individuals with a strong drive to achieve can be deeply affected if they failed to succeed;

You look back and you think: What have I accomplished? Nothing! You know, I’ve drank too much, I’ve done this, I’ve done that, spent all my money, I’ve relied on my parents too much, I’ve been a crappy sister. I feel like I failed, in the first part of my life. Feel like I should have gone to University and, maybe travelled a bit, but instead, I stuck my fingers down my throat, half my life, and took drugs and drank and got married and then had affairs, I screwed up my HSC, and got into Uni, dropped out after two weeks. # 12: BPD-II

I’ve always had ambition and I’ve always been disappointed at my lack of achievement and progress. And there would be terrible disappointment if I didn’t live up to any of it. But it’s difficult not to be a disappointment to yourself when you have all these grand ideas and ambitions. And not only don’t achieve it, but actually fail at what I am doing. # 17: BPD-II

‘Lowering the Bar’ Pursuit of achievement also created problems in the sense that it was evidently difficult for individuals to balance their drive to succeed, with the necessity to avoid excess pressure and stress in order to prevent relapse. Many had found that had been forced to limit their life ambitions in order to manage the illness, and suffered immense regret and frustration as a result;

I’ve restricted myself so much that I’m dying to [do something] that would really extend me. For all these years, I’ve felt that all I do is manage my illness. The last five years it’s just, “Ok, I’ll try not to get so much work cause I’ll get too tired.” I’m always trying to juggle things, for my illness. As I said, I do feel like I was treading water for a long time # 15: BPD-II

Sometimes I get frustrated that none of my dreams got to come true. I was just thinking that I’d have the house and car sort of things organized. So I may be reviewing some of my earlier hopes and thinking, “Well, is it all really necessary?” I think that probably is the major, significant thing. I’m sort of used to not having a career now, ‘cause I sort of lost my career at 27. Terrible, isn’t it? It used to be really important. # 9: BPD-I

It can affect my quality of life. What I viewed for myself, I suppose, is not happening, from a financial perspective. So I’ve had to accept that, for the moment, our financial situation is not what it could

Page | 179

have been. Now I feel that my life is about getting through each day and that’s an achievement! [laughs] Without killing the children! And having a relationship with my husband! So, yeah, the feeling I’ve had is that I’ve come down. That’s the thing. It’s like this life that I had planned for myself is not going to happen. # 5: BPD-II

The traumatic aftermath of episodes also causes significant assaults to self-esteem and confidence that can lead to people reducing their goals and aiming well-below their potential;

I don’t have any goals. I used to have goals but after being depressed it’s very hard. # 11: BPD-I

I’d love a boring, mundane life. It’d be married, with babies, little wifey. For me, I think it’s the idea that I like of domestic, suburban obscurity, is that it just sounds like the most relaxing and secure environment for me. I would just love it. I just want those secure things. You know what I mean? The safety of the ordinariness. I just want things to be simple and uncomplicated and have a nice dinner, read your kid a story and then put them to bed. I just want simple pleasures like that, yeah without any of the angst of what I feel when I think my experience with bipolar. # 14: BPD-II

The tendency to ‘under-aspire’ is thus revealed to be a significant issue of concern in the management of bipolar disorder. This theme will be further explored in Part Four when examining the psychosocial distress that the illness creates.

Impact of Illness on Life Goals For some participants, however, creating a lifestyle balance and reducing the stress that triggers episodes became the priority, resulting in more realistic career and personal goals;

Living a life controlling bipolar disorder, is going to be so much more quality, and I’m really looking forward to that. And it takes me every night in bed, to read, getting up at 7 o’clock every single morning and going for a half hour work-out and making sure, I really want this, I really want to manage it. I hope I can get it under control enough, forget about the past, control it enough so that I can sustain my friendships with my mother, my sister, my Dad and sustain a healthy relationship and have my own children. That’s what I want, more than anything. # 12: BPD-II

The goals I’ve got now is quite realistic. Basically, my goal is to enjoy my work and do the best I can...What was the point of making more money, if you ended up in hospital? # 10: BPD-I

A few years ago I was thinking more distinctly about a long-term strategy so I took some more time off and I did my Dip Ed, with the view to going teaching. So I mean, that decision was really partially informed by a worry that I’m never going to get this worked out, never in balance, so I’ll try and look at a job that can hopefully be oriented to a more balanced lifestyle. # 4: BPD-II

Page | 180

Thus, learning to manage bipolar disorder can also afford opportunities to reflect on life goals and renew perspectives on what is important;

I have this real problem now, ‘cause it’s like being in a near-death experience. You know, I’ve had my whole life turned upside down and stomped on and when you recover from that you want to do something worthwhile. Time seems really short. And you don’t want to waste time with silly things and that [aren’t] very meaningful. I still find it hard to find things purposeful and worthwhile. # 9: BPD-I

We’ve never been able to afford much, I’ve never been very materialistic that way. Sometimes I think, “Oh it’d be nice to have money to do this, that and the other”. But I know that’s not really important. Like I really know it, because I think, “Well, if I’m not depressed, that’s as good as it gets”. # 15: BPD-II

Being sedated for ten years… I lost so much time. Now I’ve just exploded and I want to do a million things. I think I wouldn’t have achieved what I have achieved to date, really, if I hadn’t have been sedated. I really decided what I wanted, after that experience, what I wanted from my life and how I would like it to go. # 8: BPD-I

Now I’m really getting enamoured with the idea of saving up to get a loan to buy a property and become self-sufficient. [I]t’s the kind of life that doesn’t need meaning. It’s its’ own meaning. And I think if I could get into that routine where I had to get up in the morning, because I had to milk the cow. That makes sense to me. That is an imperative that I can deal with. I don’t have any answers, so really, all I can do is bow out of the game and go back to the dirt. # 20: BPD-II

Summary These findings resonate with current research literature that achievement striving is high within the bipolar disorder population and has specific implications for relapse prevention. The strong drive to succeed appears to be linked to self-esteem, and the need for individuals to ‘prove’ themselves by acquiring external validation. This tendency may indicate a significant lack of internal resources in people with bipolar disorder that is worthy of deeper investigation, as this vulnerability could be an important focus of treatment intervention. Learning how to balance the pursuit of ambitions and high expectations with the necessity for minimising stimulation, stress and pressure is a management dilemma unique to bipolar disorder. Analysis indicates that attitudes around ‘goal failure’ must also be addressed if individuals with bipolar disorder are to achieve optimal function and adjustment.

Page | 181

Negative Coping: Drugs & Alcohol Use

Abuse of alcohol and drugs is highly prevalent in the bipolar disorder population and is associated with many negative outcomes including suicide, poor insight, non-adherence, a more severe course and more hospitalisations (Healey et al., 2009). Post (2005) found that women with bipolar disorder are at more than a seven-fold greater risk of alcohol abuse than are women in the general population. Research by Goldstein et al. (2008: 469) found that substance abuse in adolescents with bipolar disorder can increase severity particularly in terms of “…delayed recovery, hastened relapse, increased number and inter-episode persistence of symptoms, increased functional disability and mortality.” Mitchell and Schofield (2004: 86) suggest that the interaction of genetic vulnerability with substance abuse is a common pathway to illness onset.

This chapter seeks to examine the incidence of substance abuse in bipolar disorder in order to understand what drives the high rate of addictive behaviour within this patient population. While many studies have confirmed the incidence/rate of comorbidity (Cassidy, Ahearn & Carroll, 2001; Chengapp, 2000; Sonne, Brady & Morton, 1994;), research is limited in exploring the reasons from the patients’ perspective. For example, it is not known whether substance abuse is a symptom or precipitant factor of bipolar disorder, or whether it reflects risk-taking or pleasure-seeking tendencies or self-managing strategies to sustain, enhance of dampen episodes of mania.

Some researchers argue that the illness and addiction tendencies “…may share common risk factors such as impulsivity, comorbidity with anxiety disorder, or sensation seeking…” (Healey et al., 2009: 118-126). Meyer et al. (2007: 802) argue that hypomanic–proneness is “...inherently oriented towards attainment of pleasure...” as a result of heightened responsiveness of the Behavioural Activation System (BAS). According to this research, individuals with hypomanic tendencies are thus more likely to pursue stimuli that provide pleasure, relief or excitement and thus develop addictions, from sensation seeking to other pleasures such as caffeine, smoking, music, gambling, exercise, work, relationships, internet or drugs. However, substance abuse is most commonly understood in terms of the self-medication hypothesis, (i.e. as a coping mechanism to manage illness symptoms). For example, Koman (2008) suggests that it is related to the difficulty in regulating emotions but is a limited repertoire for handling stress.

Cultural factors also play a role in the permissiveness, access and acceptance of alcohol, thus increased consumption may also be viewed as a normalising strategy in the broader social context

Page | 182

(Helman, 2007). For some, substance use may be an equally valid way of controlling moods as use of prescription medication (Healey et al., 2009).

It is imperative to understand the dynamic relationship between mood disorders and substance abuse if targeted preventative strategies and effective interventions are to be developed (Goldstein et al. 2008: 476). Thus, examination will focus on what drives people to misuse substances, and at which point in the cycle, and explore whether their experiences of drugs and alcohol are pleasurable, self-medicating or escapist.

Experimentation Ten out of the twenty participants admitted to substantial experimentation with alcohol and illicit drugs. Of these, four identified themselves as alcoholics who had attended rehabilitation programs (#2, #13, #18, #21) as a result of their addictions. Significantly, the incidence of substance abuse was more common in the BPD-II sample.

BPD-I: # 2 (Female), # 9 (Female), # 11 (Female) BPD-II: # 12 (Female), # 13 (Male), #14 (Female), #17 (Male), #18 (Male), #20 (Male), #21 (Male)

Data analysis revealed that experimentation with alcohol or drugs typically began in early adolescence;

I was drinking at 14. Pretty badly. The first time I did it was probably peer pressure. But I actually had a really severe drinking problem in the end, before my diagnosis. # 2: BPD-I

Probably when I was 14 I sort of started havin’ very big highs and lows and things. I started using marijuana, which probably didn’t help me [laughs] but I think that was my coping mechanism. And that went ‘til I was about 35 or so. # 13: BPD-II

The first time I smoked pot I was 11. That was the first time I got stoned. But I was hitting the piss pretty hard when I was 11. Then anyway, it was pot and trips by Yr 9, and then with the additional cocaine, speed and ecstasy. So I’ve just had loads Of all of it. I’ve had substance abuse problems since I left school. Totally. Massively. # 14: BPD-II

Probably about, 16 I got quite heavily into smoking weed. For a long time I was essentially addicted to marijuana. Everyday. Lots. I was taking so many drugs at the time, I have no idea. Lots of speed. I was selling speed as well in a nightclub. It’s a drug haze really, for years I was taking all sorts of things. Definitely fed, you know, it was fuel for hypomania. # 20: BPD-II

Page | 183

I relieved a lot of [unease] when I first picked up my first drink at 14. I kind of felt like, “Ahhhh”, I could live. I smoked pot probably at 16. But my first heavy recreational drugs were about 19. Amphetamines. Cocaine. I used heroin. I used prescription drugs. # 21: BPD-II

What draws individuals to misuse substances? This section examines the rationale for misusing substances. Typically, drugs or alcohol are used to manage escalating or agitated energy, to ease bodily discomfort or anxiety, and to cope with altered mental states during bipolar episodes. Drinking and drug-taking are also regarded as a socially legitimate way to cope, ease boredom and loneliness. They are also integral ingredients of the party culture.

Self-Medicating In the first instance there is clear support for the self-medicating hypothesis, with the majority of participants turning to substances (usually in pre-diagnosis stage) as a way of releasing troubling symptoms.

That was my way of releasing it. And I would drink, but I didn’t know how, like an Aboriginal doesn’t know how to handle their alcohol, it was totally out of my control. Now I realize I should never have been drinking, ever. I would drink extreme and for about 12 months, I took drugs, and a lot of them in a short period of time. It’s a miracle I’m not dead. # 12: BPD-II

Look, I’ll be honest, I was self-medicating with weed. The only reason I got so heavily into it was because I found the insomnia stopped, I slowed down my thought processes, and you know, my brain just goes, and goes and goes and goes, to the point where I just can’t stop listening to that now. Weed slows down that analytical process, but it mightn’t even slow it down, it might just draw a blanket over it. I’m almost entirely disassociated, from everything. I don’t think I seem to react to thoughts. # 20: BPD-II

I clearly remember my first drink; the bubbles and it went to me toes, and I felt the change mate. It was like a spiritual awakening. That first drink, that first mouthful, it was like, it untied me and it freed me from bondage. And I chased the effect for a long, long time. # 21: BPD-II

As coping mechanisms, I’ve discovered pot, which gives me a time-out. I can have all the worries in the world but if I get stoned, I’m happy to just, eat, drink and be merry. I’m happy to just chill out with friends, with my dog. It has a calming effect. It’s the only effective time-out. # 17: BPD-II

The other way of treatin’ it was to dull it, to numb it, put a blanket over it, you know. Basically you’re lookin’ for the level playing field. You just want to get that, like, I used to see my kids at home, they’d just lay on the lounge and put a movie on, I can’t do that, I can’t sit at home. I couldn’t settle down without it. # 18: BPD-II

Page | 184

Cause of all the anxiety and fear, I’d need to do pleasurable things, kind of like self-medicate in a way. # 2: BPD-I

I was trying to self-medicate and things were just totally out of control. Just got really bad. You don’t even think about the professional side of it, it doesn’t enter your mind, you just think, “Well I’d better go have a few beers, I’m startin’ to slide down again”. Or, “I’m gettin’ too high, I can’t relax, I wanna to bring myself back down and calm myself down a bit”, you know. That’s what I’m a bit dirty on, ‘cause you just go straight to the alcohol to try and cure this problem and there’s people out there with a wealth of experience and you don’t even turn to them, you know, just keep beatin’ along the same path with the same result. # 18: BPD-II

One participant only drank out of boredom, which highlights a potentially problematic factor in bipolar disorder given that illness episodes can routinely prevent individuals from working, or reduce their capacity to take on challenging roles. Thus, effective management of ‘down times’ may be a significant element to address when considering prevention strategies;

I really need mental stimulation, otherwise, I’ll just do things, like drink. I can really notice that if I don’t have mental stimulation, I drink more. And as soon as I get that in, I’m not interested. So it’s a real boredom thing for me. # 9: BPD-I

Accustomed to Altered Perceptions For some, the experience of altered mental states is the natural order of things. Thus, individuals can be at ease with the effects of heavy substance use. As participants demonstrate, some people with bipolar disorder do not fear the psychological effects of drugs as they are accustomed to different modes of perception;

Actually, one of my theories is that bipolar people are used to just switching into a mood quickly, so doing that kind of them isn’t as foreign to them as it might be to non-bipolar people. Just when you’re not feeling very good, and you just want to feel better inside, and you know that something can artificially do that for you, you’re already used to taking meds, or going into mood states, so I don’t think it’s a big leap for someone with bipolar disorder, to take something that could change their mood states. Other people might find that frightening, or whatever, and I think people with bipolar disorder just go, “Whatever, just give me another state. Any one but this one.” # 14: BPD_II

Cause we naturally get high anyway and the highs are similar to being drunk, I suppose. # 11: BPD-I

I took a lot of acid and speed when I was younger, far too much probably. It was definitely after the depression started, for sure. At first it’s revelatory. Because it alters your mode of perception... The effects are immediate. You may have been having an amazing journey, in a completely other

Page | 185

landscape. Amazing, amazing things. I have never felt more centred and alive and part of the entire Universe as I had on a particular DNT experience. It is beautiful. # 20: BPD-II

What stage in the cycle are individuals most likely to turn to D&A? In seeking the understand the issue of substance abuse comorbidity in bipolar disorder, it is also of particular interest to examine at what stage in the illness course individuals are more likely to turn to alcohol or drugs. It appears that drugs and alcohol are mainly used as a suppressant, to curb energy during highs and numb feelings during lows;

Well, if you’re really down, it’s a suppressant. It suppresses the really bad black feelings you’re getting with the depression. And if you’re up with your high, it pulls you back down for a while. # 18: BPD-II

In the main, use is more common during mania, helping to ‘put out the fire in your head’ and keep a lid on escalating energy and mood;

Manic is the dangerous time for me. When I’m manic, I want to increase the high. That is a time that I have identified as a trigger. I feel so good, it’s like a reward. Yeah, I want it to continue. It’s like I’m not satisfied with it, I want to multiply it. Or maybe I’m looking for a bit of relief from it? Maybe I’m looking for just a step down from it? I used to race to the pub and I’d have a drink and [the agitation] would go, I’d calm down. Not knowing what that was. I used to just drown ‘em out [the highs], so the next day I wouldn’t be too manic, I’d be very sick. I’d be grog sick. # 21: PD-II

Just started drinking to bring the highs down and try to get out of the lows, and it’s just fuelling the fire. It bought me down, you could relax a bit and all that, but it doesn’t last and it plummets you into depression and you really hit the low spots then, and stay down there. You can’t dig yourself out while you’re drinking. You could feel it actually wearing off, cause it sends you into bad depression, it’d just start, the feelings coming back, the dark feelings and then they’d just get worse and worse

One individual describes how he is drawn to the soothing effects of alcohol that helped him alleviate bodily tension during mania;

I’m very tense when I’m high, I’m very fffff [tenses up body] and always, always, a drink first was ease and comfort. From the first time I picked it up I think my subconscious picked up, “Hey wow, this is good, this gives you ease”. Ease and comfort. The two things I never had, you know. So when I’m uneasy and uncomfortable, I think a little light [snaps fingers] goes on in my subconscious that says, “Drink = ease and comfort”. # 21: BPD-II

The accelerated physiology that occurs in mania may also mean that alcohol provides an ‘instant hit’ of energy. In cases of long-term untreated bipolar disorder, it is easy to see how this cycle can develop into alcohol dependence and more profound addiction problems;

Page | 186

I was going to the Pub in the mornin’, havin’ 4 or 5 beers, just to get goin’. Sometimes I’d go to the early opening before work and have a few beers, just to start the day off. It gives you that pickup to get going and start movin’, otherwise you’re sort of [collapsed action]. Sometimes it drags you out of bed, to get up, have a shower and that, and go and have a few beers and then, “Righto, we’ll get on with the day, do what I have to do”. It’s an instant sort of hit, you know. But not for long. Maybe for an hour or so. # 18: BPD-II

I get this taste, it’s like a fire in my mouth and I need to have more, and more and the more I have, I want more and more and more. I can’t stop. That’s that physical side of it, for me. I’ll drink until I can’t drink anymore. And I’ll be very sick. They’d last a couple of days, probably. And then I’d come right down, but I couldn’t connect the two because I’d be, “Oh I’m depressed because alcohol’s a depressant” or I would have taken lots of drugs, especially ecstasy used to make me go VROOM! It’s hard, my drug and alcohol addiction coated over what really was going on, I believe. # 21: BPD-II

However, according to this sample, use was less likely to occur during depression. This probably related to the lack of physical energy that would be required in order to go out and acquire goods;

I’m actually less likely to when I’m down. Because traditionally [when depressed] I spend all my time on my own, and I don’t really drink alone. That would engender having to go out, get it from someone, which are the kind of interactions that I cannot participate in when I’m really depressed. # 14: BPD-II

When I’m depressed, I don’t feel like a drink. No way in the world. I don’t feel like drinking. # 21: BPD- II

One individual described her drug use as a way of creating interpersonal distance, a practice that hints at masking underlying vulnerability or low self-esteem. This example highlights that even in times of manic-fuelled confidence, individuals can retain a sense of fragility;

There’s something of wanting to disappear in it that surrounds my drug taking. That it’s a way of not connecting with people you know, it’s just a way of isolating myself – even when I’m feeling cool and high and I feel like I’m carrying the whole crew that I’m going out with. I still like to think I’ve just got this little seed that’s kind of reserved, you know? # 14: BPD-II

Life became so complex and I just needed something to help me get through and I just got drunk and stoned the whole time. I felt like living was about surviving. It didn’t come naturally to me. That’s the way I felt. It really felt a challenge for me, to do a lot of the things that I saw. Interacting. Being a human being. Interacting with other friends. # 21: BPD-II

Page | 187

Excessive reliance on drugs and alcohol can also be driven by the need to escape from deeper emotional and psychological health issues, for example, to allay self-hatred or social anxiety, that are often separate from the physical drivers of bipolar disorder episodes;

I used anything that would change the way I felt. And a lot of it was about I didn’t like who I was. It was just to change the way I felt. Because I didn’t like myself. And then in the end, I hated myself. When you shut down and you have all that stuff going on, alcohol and drugs are the best thing, mate, because you can suppress anything. I could be whoever I wanted. It was a solution to my problems. Massive fears, all these fears ruled my life. And when you have fear, you need something to give you courage. The ease of a drink, which took it away for me. Like, I had to have a drink before any social engagement, because if I had to put my hand out to shake your hand, ohhh, it was horrific. It was like someone was about to kill me! [laughs]. That’s the amount of fear I had. # 21: BPD-II

One participant used marijuana as a way of numbing intense ambitious drives that were intruding on his ability to function in everyday life. In smoking pot, he was able to find respite from the overwhelming force of these internal pressures to achieve, thus easing the tension between his actual and ideal self;

I get stoned and I’m happy to just watch TV and eat food and then go to sleep. I often felt when I was stoned, I could relate to my dog better, because that’s what a dog likes to do, he likes to spend time with friends, go for a walk, sleep, eat and so my life became simple again when I was stoned. I can honestly say that I think pot has saved my life, more than once, when I’ve been really bad, just being able to smoke and forget about things. # 17: BPD-II

Social Aspects The social aspect of the use of alcohol and drugs was also revealed to be a relevant factor. For some individuals, drinking and drug taking offered a way of reducing some of the isolation experienced in bipolar disorder;

The drug use, when you’re high, it’s largely, “Great, this is fun”, but there’s also other people having it as well, so it’s kind of like fun for everyone else to feel psyched and like into things as you are. # 14: BPD-II

Weed is an easy one, because it seems so social at first. Shared joints with a friend, that’s fine, it’s like having a drink. Seems social because you’re with three other people and they all want cones and bongs as well. # 20: BPD-II

For others, drug and alcohol use is just a social habit and a side-effect of partying lifestyles. This demonstrates that substance use is, in part, learnt behaviour and that its widespread social acceptability probably contributes to its popularity;

Page | 188

I tried pot and cocaine and a fair bit of drugs. I like to drink, I drink a lot. My family are very into getting high, getting off your face. We’re into drugs and drinking and partying. # 11: BPD-I

My life revolved around the party scene for a long time, and then just drinking and drugging really, consumed so much of my life. It’s like ground hog day, you’re just repeating, you really are stuck in a rut. # 21: BPD-II

The social aspect of is also a factor in fuelling the excessive consumption that exacerbates the highs;

Mainly when you were out drinkin’ in company - that would send you through the roof. You’d do stupid, silly things, things that you wouldn’t normally if you were by yourself. It’s more or less when you had an audience, you know, you’d fuel it, you’d shoot higher with the alcohol. # 18: BPD-II

The social influence thus cannot be extrapolated from the practice of heavy drug and alcohol abuse, as is evident in the following example, where the individual was only able to curb her use of substances after moving away from the social group entirely;

I wasn’t around people that were like, “Do you want to go to the toilet and do a line of coke, or come on let’s get drunk tonight, c’mon, you can have another one, you can have another one”. So it just made all the difference. I didn’t have the peer group pressure. # 12: BPD-II

Excessive drinking can also be a way of masking wild behaviour that is more socially acceptable than admitting to managing a mental illness;

I’ve been on the grog a fair bit to try and mask it all, or to cover it or whatever. I’d drink a lot when I was on these massive highs, which just makes things crazier. I don’t know if I subconsciously knew I could cover my crazy behaviour by drinking, and blame the alcohol and not blame myself. # 13: BPD-II

Worsening Effect It is inevitable however, given the symbiotic effect of drugs and alcohol on mental conditions that increased use has a detrimental effect the cycle of illness. Participants recognised that, as their addictions grew more intense, the ‘gap’ between distinct periods of highs and lows was reduced. Inevitably, as individuals tried to cope with stronger, more fluctuating mood states, as well as the physical side-effects of substance abuse, behaviour and reactions became rapidly problematic;

I could never really handle it. Like some people could go out and have 10 schooners and be happy and laughin’ and I’d have 10 schooners and I’d either just go, POOM CRASH. It was never a good time, it was never a happy time when I was drinking, but I couldn’t draw myself away from it. I could be drinking happily along and then something would tick me off and I would just go right over the edge. Took that tiny bit of self-control I probably did have during those high times, the alcohol would take

Page | 189

that away and I’d just go right off. Do really crazy things. Keep drinkin’ til I run out of money, or the alcohol stopped or they kicked me out. And when I was on the high and drinkin’ it was just not a pretty thing. Instead of staying at home, doin’ the right thing, I’d go down the local golf club, and start drinkin’ with anyone I could drink with. Just keep goin’ and get meself into all sorts of trouble or just mess meself up big time. # 13: BPD-II

The highs got less and the lows got more towards the end. I used to use physical exercise to come out of the depression. But that, slowly over time, stopped working. Couldn’t do it. And the depression got longer. # 21: BPD-II

Just these last couple of years I’ve probably just got worse and worse and worse. I just get on these crazy highs and lows but the gap between it has just increased. I’ve probably gone up and down, spike up and spike back down. For a while there’s been no sort of middle ground. Before there’d be middle ground, I’d have a bit of a dummy spit, a bit of a low, then go back to normal again. But now I’m just bypassing that totally. I’ve probably tended to be going chhh-boom-CHH-BOOM. I used to go up and then down, then plateau out. Now I just bypass that middle ground and am tending to spend a fair bit of time high. # 13: BPD-II

The cycles started to go end-to-end, they were getting closer together. And then you get into despair and you sort of say, “Well, are they goin’ to join up and is it just going to be like this forever?” [The depression] started to get longer and longer and the good bit in the middle was gettin’ shorter and shorter. # 18: BPD-II

Thus, while drug and alcohol use may begin as an understandable self-management strategy to numb depression and suppress the highs, over time, the dependence results in a cycle of severe addiction. In such stages, the chaos of substance abuse becomes more problematic than the episodes of bipolar disorder and it was evidently difficult for individuals to identify the pattern illness that underlie their addictive behaviours;

I can’t identify highs and lows throughout that, probably 10 years, because I camouflaged it by either eating and throwing up and drinking. Just being… crazy. # 12: BPD-II

The problem for me has been getting rid of those drugs and alcohol out of my life, and clearing that wreckage, to be able to look at the bipolar. Because I couldn’t look at anything in my life, until I looked at that problem first, and got a bit of stability there. # 21: BPD-II

It was a cheap option, I gotta say that. It was the easy way out, instead of fighting your way through, or get professional help or something. I look back now and think, “How stupid I was to think that! How’s alcohol, drinkin’ to excess going to fix anything?” It’s only going to lead to one thing, you know, your demise. You can only go one way with that. I always knew the alcohol was makin’ it bad, it’s not makin’ the situation better, it’s makin’ it incredibly worse’. You know. I always seemed to make these

Page | 190

big, brave statements, “I’ll stop drinkin’ and sort the problem out”, and you never do. When the alcohol wears off again, you just go and get another one. It’s the easy way out, so. It doesn’t fix anything. # 18: BPD-II

It’s so mind-boggling that I drank and drugged in ignorance for so long yet, you know, as soon as I stopped and went into rehab, it was all in front of me. Like, I don’t beat myself up about it, but all the evidence was there. Clearly. And it didn’t take too much for them to convince me, what I was. # 21: BPD-II

Further complicating the affiliative relationship between mental states and substance use is the fact that individuals with bipolar disorder can develop an extremely high tolerance of alcohol or illicit drugs. The surge of manic energy appears to have a definite impact on the physiological processing of substances;

I think I have quite a high tolerance. It takes quite a lot of wine to relax my body. So yeah, when I was 14 I could easily drink two six-packs, plus beer, plus wine. I could just drink so much but it didn’t make a dent in me, it just didn’t relax me. # 2: BPD-I

My psychiatrist actually said to me that she thinks I have a very high tolerance for drugs, and she can tell that by the amount of lithium that I need to have in order to get the right levels. When I go out for those massive weekends, I’m like up and awake the whole time. I’d just drink enormous amounts. Totally. # 14: BPD-II

As a consequence, individuals with bipolar disorder can often withstand unhealthily high amounts of substances before they feel any effects.

Motivation to Change As has been well illustrated, many participants have had their lives ruined by the extreme turmoil of their addictions. Analysis now turns to an examination of how individuals have handled their addictions and started on the pathway to healing.

I needed to do something to fix myself, because I was on a downhill path, you know. The highs and the craziness were just getting’ beyond any acceptable levels and I was just affecting everyone. I was alienating everyone and if my marriage did dissolve I probably would have gone even worse. So, just for my own wellbeing, and sense of stability, I had to do something. I probably denied it for a long time. And I think this was my so-called awakening, or my wake-up call. # 13: BPD-II

Of concern is that, for those participants who admitted to a significant drug or alcohol abuse, steps towards genuinely addressing their addiction problems were only taken after reaching the extreme despair, hopelessness and helplessness of ‘rock bottom’;

Page | 191

I was on skid-row, I was down and out, I was having alcoholic seizures. I was locked in my bedroom, you know, I was destitute in my own room. It was like I was living on a park bench, in my bedroom. I took a lot of long service leave, couldn’t work and was just drinking myself to death, basically. I mean, I used to have three-day benders, where I’d disappear. Ohh, it was horrific. Really was horrific. You know, I couldn’t physically look after myself. Couldn’t wash, couldn’t do anything, it was awful. # 21: BPD-II

The worst time I was picked up by the police, when I was 23, and that was when I’d just been on an all night bender on alcohol, and I’d drunk a really, really horrible amount of alcohol and I just went into an alcohol-induced, psychotic rage. I remember I was stuttering, I couldn’t speak! I think it was rock bottom, that night. It was the worst physical pain that I’d ever had. You know, you drink too much because you’ve tried to get rid of it, and then you’ve behaved like a dickhead and there are consequences the next morning, and then you enter into psychosis and then WHOOF. # 2: BPD-I

When you’re withdrawing from alcohol, you go into seizure, well it happened two or three times. I thought I was going to have a breakdown, for sure. I couldn’t see any way out of it, I was totally consumed with it, you know. If I wasn’t drinkin’ I was depressed as anything, you know, I couldn’t function. I was usin’ the alcohol to function, actually. # 18: BPD-II

It was only when jobs, marriages, health or financial situation was on the line that individuals sought, or were forced to seek, help for their chaotic and destructive behaviours;

It took so long for me, it had come to the end of the line, I was havin’ seizures, me liver was just about stuffed, so that’s what it took to get me to seek professional help. # 18: BPD-II

In the end, when I was down and out, I said, “Please God help me, I can’t do this anymore”. I’m not scared to tell you this, I cried out for the Lord. And that was the point. That was the point [snaps fingers]. That was the change. That was the jumping off. I jumped off into the hands of some power greater than me and my life’s changed since that day. I just felt relief. Something shifted and I clearly remember it. Something shifted and I, I don’t know. It’s hard for me. I can’t really put too much of a label on it to do it justice because I don’t understand it. I just think, until the need is great enough you know. When the need is great enough, when you’re ready to put your hand out. # 21: BPD-II

An encouraging finding was that, for some individuals, the urge to drink evaporated when they began taking mood stabilizers and marked a vital turning point;

[It’s] just incredible for someone who was so addicted to alcohol. And it’s amazing, I just don’t have that problem with alcohol anymore, so it must have been settled with the medication. # 2: BPD-I

Page | 192

I haven’t felt the need to go back there [to AA]. But, the thing is I’ve stayed on the medication this time. So I don’t know if it was the medication makin’ me feel better, or because I’d stopped drinkin’. But the point that I didn’t start drinkin’ again, something’s workin’ there. # 18: BPD-II

I can’t even remember. That all kind of happened at once, the bulimia, the drugs and alcohol, I went to the Doctor and started the Cipramil and moved in with my closest girlfriend and my life just started to change. Different values, different things, I would enjoy different things, new group of friends, go out, a lot of them don’t drink. # 12: BPD-II

A positive consequence of taking medication is enabling individuals with substance abuse problems a chance to stabilise, and envisage a new way of living;

Just seein’ the good life, cause I was in the doldrums for so many years, just lookin’ inside a pub. You get out more and see other things and you’re looking to do other things, you’re not just saying, “Oh well, what’ll I do today, this afternoon, oh well I might as well go down to the pub”, you know. Plus it holds you back, if you’ve had six or eight beers, well you can’t go jump in the car and go do anything. You’re tied to just stayin’ at home, you can’t do anything, it’s chains you down. # 18: BPD-II

Some were able to identify the situations that trigger their need to drink, as in the case of the following participant, who recognised the need to keep fulfilled and busy as key to retaining control;

The only thing that worked was when I started doing this volunteer work and there were new, stimulating things happening to me, and new people, new activities. So, it wasn’t until there was something added into my life that I could cut back on alcohol. # 9: BPD-I

Others only began to address their drug and alcohol problems when their effects become harder to sustain;

I think I’ve done all the wrong things and I’ve tried to take all the cheap options to make myself feel better, and it doesn’t work. It doesn’t! The drugs actually do stop working. Or you just end up taking such an enormous quantities compared to everyone else that it’s just financially not viable, because you just can’t feel any better, it’s just so stubborn. # 14: BPD-II

Acid is an intrusion into the body. And what it ended up doing to me is putting me into these same, negative self-reflective cycles of thought. Like a chain that loops back into each other and you can’t stop because you’ve got this acid going PWAHHH. I won’t take it anymore. When you’re on acid, especially for the first time, you bring up a lot problems that you have, underlying psychological issues, they’ll come out, that’s what it’s for. Acid doesn’t take you anywhere else, it puts you straight into your own head. That’s the problem with it. # 20: BPD-II

Page | 193

Summary These findings illustrate the intricacies that need to be explored in order to understand the association between bipolar disorder and substance abuse. Investigation of comborbidity issues requires broadening knowledge of multiple factors, such as what drives individuals with bipolar disorder to first turn to alcohol or drugs; the reasons for ongoing dependence; at what stage in the illness cycle and use occurs, and what assists in breaking the destructive pattern of coping.

The tremendous reduction in quality of life and substantial deterioration of abilities that occurred before individuals committed to help is of particular relevance when considering intervention measures, raising questions as to what factors are involved in developing long-term denial and high thresholds of distress. It is plausible that individuals with bipolar disorder, who typically begin using substances in early adolescence, suffer from various cognitive impairments relating to the ability to assess risk, process cause and effect and understand consequence.

Given that individuals tend to begin experimenting in adolescence, which is the typical time of bipolar disorder onset, more attention needs to be paid to early identification in vulnerable youth. In terms of education and prevention in the broader community, it is important to demonstrate that excess use of drink and drugs inevitably leads to worsening affect and significantly damages quality of life over time. Helping people to identify when the urge to drink or use drugs are a by-product of mania or depression is an important step on gaining control.

It was encouraging to learn that lives did improve following the diagnosis and treatment of bipolar disorder. This appears to indicate that the underlying problem is one of mental illness, not addiction, which offers hope for the success of intervention strategies. Evidently, more research must be done in this area, and greater treatment alliances forged between mental health and addiction services.

Page | 194

Consequences of Shame, Stigma & Guilt

Coding of the transcript data reveals that proneness to shame, guilt and stigma are germane to many individuals’ experiences of bipolar disorder. These emotions negatively impact on ways of coping and are impediments to help-seeking that can lead to a worsening prognosis. It will be argued that shame and guilt-proneness are related to poor psychological and interpersonal outcome and should be considered a significant factor predicting adjustment in bipolar disorder (McMurrich & Johnson, 2008). Narrative analysis indicates that shame-proneness, in particular, may have an association with relapse and for this reason must be considered a key risk variable and a worthy target of future research.

The experience of shame in bipolar disorder is a complex phenomenon that impacts on course and functioning, yet it remains a facet of the illness that is routinely overlooked. Analyses reveal that there is a high incidence of shame within these narratives and thus proves to be a highly relevant factor for many individuals with bipolar disorder. The experience of shame can lead to the development of negative behaviour, such as withdrawal, concealment and chronic self-hatred which can greatly exacerbate existing clinical symptoms of depression. Shame also appears to create damaging internal appraisals of self that significantly effects self-esteem. Therefore, when considering development of optimal treatment strategies for bipolar disorder, shame is an emotion that should be addressed. In order to target appropriate interventions, the reasons for shame- proneness must be adequately identified.

Both shame and guilt are considered to be “self-conscious emotions” but are usually differentiated by the following; shame is considered to be a “self-oriented” emotion involving a global, negative self-evaluation. When shamed, negative behaviour, or failure, is taken as a reflection of a more global and enduring defect of the entire self (Crocker & Park, 2004: 395).

In contrast, guilt is “oriented towards others” and involves an evaluative focus that relates to specific behaviour, not the entire self (Leary, 2007). In the experience of guilt, there is a clear distinction between self and action, and concern about one’s effect on others. For this reason, guilt is often linked to empathy and reparative actions and thus seen as a more adaptive and constructive emotion to shame. Shame, in contrast, tends to elicit different actions because it is fundamentally oriented towards the self, often leading to behaviour such as concealment, passivity and rumination (McMurrich & Johnson, 2008; Teroni & Deonna, 2008; Anolli & Pascucci, 2005).

Page | 195

Perceived self-discrepancy is considered to be a vulnerability marker of shame. Some theorists, such as Higgins (1987), suggest that the negative emotions arising from shame are related to lack of congruence between actual, ought and ideal selves, often triggered by failure with respect to aspirations and ideals (Teroni & Deonna, 2008). Given that bipolar disorder often causes instability of identity and behaviour - and thwarted life-goals - the experience of self-discrepancy, and thus shame-proneness, are likely.

McMurrich & Johnson (2008: 8) found that shame-proneness is related to poor psychological and interpersonal adjustment outcomes and greater levels of anger, depression, hostility and anxiety. They argue that shame is a factor that contributes to reaction to criticism, rejection, non- achievement and fear of mediocrity. Luoma et al. (2007: 1342) suggests that higher levels of internalised shame are associated with perceived stigma and relate to lowered quality of life and psychological flexibility, and higher levels of concealment and “secrecy coping”. Markowitz (2001) claims that individuals who experience stigma anticipate devaluation and discrimination and it is these demoralising expectations that lead to withdrawal and concealment. Stigma removal campaigns are therefore still important in order to change public understanding and remove obstacles to help-seeking (Kelly & Jorm, 2007; Disease Control Priorities Project, 2006).

In this chapter, it will be shown that shame-proneness is a relevant factor in some cases of bipolar disorder. High levels of shame appear to correlate with a less adaptive course of illness and the reasons for this connection will be theoretically explored. The role and consequence of stigma and guilt on illness course will also be considered.

Shame Related to Illness Many participants spoke about their experience of bipolar disorder in terms of humiliation and mortification. These adjectives, interchangeable with descriptors such as degradation, indignity, embarrassment and loss of face, powerfully highlight the depth of emotion that can assault the individual who attempts to negotiate their way through the illness, particularly following confronting aspects of hospitalisations and psychosis;

The humiliation. I’ve been to every single Psych hospital in Sydney and had shock treatment, you know, awful things happening to me. # 6: BPD-I

I was mortified. I just felt like I couldn’t ever see anyone that I’d ever worked with before. I felt like my life was over, really. # 9: BPD-I

Page | 196

A lot of the things that I’ve done, that I haven’t understood in myself, like “Why did I do that?” You know, they’re really cringey thinking about. I do feel mortified sometimes. # 14: BPD-II

If any of my kids did develop depression, I would never forgive myself. I mean, I would not wish it on my worst enemy. Imagine how mortified, how irreconcilably guilty and shamed I would feel if I had a kid who ended up like me. I just couldn’t bear that. # 17: BPD-II

Intense feelings of shame can develop simply by having to admit to needing help;

I waited [in Emergency] for hours and hours. They put me on a bed, and made sure they could see me, they took the curtains across I guess cause they knew I was suicidal. But I just sat on that bed, I was so ashamed, I was crying. But I needed help. # 15: BPD-II

For some, the experience of shame has distinct physiological effects, a finding supported by Anolli & Pascucci (2005);

I wake up with a clean-slate on my moods but within seconds I remember who I am, where I am, my circumstances, and it comes rushing back. There’s a constant, mild burning feeling in my face and gut, like I used to get when I was a kid and I knew I was in trouble. # 17: BPD-II

The fact that some individuals felt humiliated by the act of seeking professional help to deal with dangerously strong suicidal impulses is a matter of concern and indicates that identification of shame-proneness in people with bipolar disorder should be a priority of treatment and intervention.

Given that mania can result in loss of insight or fuel uncharacteristic behaviour or extreme reactions, there is a specific risk of people with bipolar disorder developing emotions of shame, guilt or regret, that can end up exacerbating the cycle of illness itself;

I have many regrets of the last five years of my behaviour. All those experiences that you have, when you feel so ashamed. The shame! It’s just awful. # 5: BPD-II

What happens to me is that I go out doing all these things when I’m manic, and then I have this terrible depression where I basically spend the entire time rehashing everything that happened, and analysing it and feeling embarrassed about it and whatever. I find it very hard to integrate the two – that’s a skill I haven’t yet developed. # 14: BPD-II

Uncontrollable behaviour and impaired decision making during symptomatic episodes can lead to transgression of social norms and threaten personal values. Negative internal self-appraisals need to be appropriately addressed to ensure shame does not affect individuals’ global sense of self. For example, one conservative, stay-at-home mother shared the devastation she endured as a result of obsessive and uncontrollable masturbation and affairs undertaken during manic episodes;

Page | 197

I’ve always been very moderate in my sexuality, but I started masturbating, occasionally, then it was every day, then it was a couple of times a day, but I wasn’t really enjoying it, do you know what I mean? I wasn’t wanting to do it....That’s the sort of thing I would never, and have never told anybody. I can’t and won’t ever talk about it. # 16: BPD-I

Negative emotions of shame and guilt need to be resolved in order to give individuals the best chance of moving on with minimal damage to their self-evaluation. The following examples illustrate the ongoing burden that can be experienced;

A lot of guilt and shame, “Oh, if only this hadn’t happened in the past”, or “what’s going to happen?” Doing heaps and heaps of head miles. When I’m in collision with people all the time, I get guilt and shame. I do things that are not really me. I do things to fuel my addictions, because I couldn’t afford it. I did a lot of stuff I’m not going to talk about here, but there’s a lot of things that I wouldn’t usually do. I’ve had a lot of shame, lot of guilt. And I still carry a lot of that today. And that stuff comes up. # 21: BPD-II

I mean there are some things that are genuinely embarrassing, or upsetting, or things that you regret. Yeah, there are heaps of things, and you do realise, and it is upsetting. Because it is disappointing. Shame’s the biggest thing. I think shame is really the right word. I always feel like I don’t want to go very far, or it’s just this sense of shame that follows me all the time. I don’t want anyone to see me, I don’t want to go anywhere, I feel embarrassed, like there’s lots of things I shouldn’t have done and other things I really go over and over and over and over, that I feel so guilty about the way I spoke to somebody. I’ve spent many hours feeling terribly guilty. # 14: BPD-II

The specific consequences of illness episodes can also exacerbate feelings of guilt, particularly for those individuals who are also parents. Parental guilt appears to be an enduring sources of regret and sadness, and thus arises as a worthy focus of therapy;

I‘ve always thought that I was a failure as a mother. I was being carted off to hospital so often, and one of the reasons that I had such terrible guilt about my daughter, was that it affected her. I can still remember once when my GP was taking me off to hospital and she was on the side of the side of the road, crying out, “Please don’t go Mummy, please don’t go”. Ohhh, that was hard. But I just wasn’t well enough to look after them. It was terrible. # 3: BPD-I

And I feel so guilty about being depressed around my children. My husband has really taken the slack, a lot. Whatever it is, he will do it. He’s very good like that. So, there’s guilt for that too, there’s guilt. Even though you know you’re not really guilty for having depression, but still you feel guilty. # 15: BPD-II

Page | 198

In some cases, however, shame-proneness is not necessarily a consequence of illness but is related to certain personality styles that cause people to interpret failure as devaluing their entire self- worth. As Teroni & Deonna (2008: 730) state, shame ultimately occurs as result of perceived threat to personal standards, and “...puts into questions one’s overall perception of one’s value...” This is most poignantly demonstrated by the extent of one man’s shame over his inability to pursue wellbeing strategies, and sense of failure at having failed his attempted suicide;

Obviously, I have the will to be happy because who doesn’t want to be happy? But, I don’t understand how I’m going to do it and even the trivial things, like sleep, exercise and all that sort of stuff, I fail to do. Which just compounds to my sense of failure and guilt. And shame. I don’t feel ashamed that I’m depressed, I feel ashamed that I’ve failed in so many endeavours, including my suicide. I was disappointed, I was mortified that I couldn’t even do a simple thing like kill myself. I felt so ashamed of that failure. At the time, it was really just loathing, I just hated myself, I just couldn’t bear being me. I just thought I was just so terribly worthless, and someone like that should be punished. # 17: BPD-II

Shame Related to Stigma Beyond shame and guilt related to consequences of illness, shame can also be experienced as a result of stigma. Stigma creates a fear of judgement that proved to be a major barrier in help- seeking for many individuals;

The stigma is unbelievable. It’s just terrible. It’s really, really terrible. It’s because the illness is the behaviour and the behaviour is the illness and people can’t separate that. They can’t tease out all the strands. But I really feel with bipolar, to get any help, you have to reveal things about yourself that people are going to judge you for, in a non-bipolar way. # 16: BPD-I

Some individuals actually avoided consulting with psychiatrists simply because they do not want to be associated with a stigmatised group;

Then you’ve got that stigma of going to a psychiatrist, you know. The old thing of, if you’re seein’ a shrink, you’re a loony, so you sort of hold back on that. # 18: BPD-II

Stigma can also be implicated in creating negative attitudes within the wider family. Such discrimination can impede treatment and reduce the likelihood of understanding and support, as evidenced by the following examples;

The dysfunction of my family was, “Don’t talk about the dark secrets of the family when you’re outside, don’t bring shame on this family, or you will suffer.” So, I was really scared, I was fearful of saying, “Oh, I’ve got a mental illness”. # 21: BPD-II

Page | 199

The fact that [my psychiatrist] is a man of such great esteem and such skill has meant that [my parents] trust what he has to say. And coming to a specific unit that deals with this problem, has made them say, “Well, if she didn’t have this problem, they wouldn’t accept her here.” But I haven’t told them I have bipolar. I don’t think I ever will. [My husband’s] the only person that knows. I have told them that I have melancholic depression. # 5: BPD-II

My parents never visited me, when I was in a psychiatric unit. They never came near me. People didn’t understand why I was there. They didn’t understand how many tablets I’d have to take, to be cured. When you’ve got a broken mind, people can’t see it, and don’t understand, no matter how hard you try. # 19 BPD-I

In this way, acceptance of bipolar disorder can be significantly obstructed by shame over having a mental illness. In the following example, one participant who had lived with the illness for over four decades, highlighted how acceptance was a constant and daily struggle due to the associated stigma;

You never, ever forget, that you’re bipolar. In everything that you do, make a coffee or welcome you at the door, or go and see my grandchildren, all the time, in my head there is this feeling of, “You are different from everyone else, because you are mad”. You’re actually quite insane, but you manage somehow to handle it. And it’s so hard, and you envy other people, and you look at other people and you say, “Oh, they’re just ordinary people going about their business, without any problems at all, and here am I, an absolute mass of gibbering idiocy”. That’s how it feels. Wishing for normal, is bliss for a day. # 3: BPD-I

This example indicates that shame can prove profoundly wearying in the long-term and may even be a factor in the elevated suicide risk for long-term patients.

Social discrimination was also experienced by participants living in rural areas. This shows that the lived consequences of enacted stigma is a real threat preventing many people from communicating honestly about their condition and is a significant barrier to treatment;

There’s nothing worse than being misunderstood. A lot of people just don’t understand it. Especially in rural areas, my god. You know, it might come up in conversation, and I’d just say, “Oh yeah, I have bipolar disorder” and then all of sudden they wouldn’t call me. And they talk, living in small communities. There are definitely social stigmas. Definitely. So I don’t talk about it. # 8: BPD-I

Why is it so difficult? I think because of the stigma. I feel that they might think I’m mad. That living in a community where I’m still very attached to, even though I haven’t lived there for years. So, if one person knew, the whole community would know. I don’t want people making judgments and thinking that you’re mad if you’ve got bipolar, that you can be out of control, that you’re not capable of

Page | 200

looking after the kids. Other people might not trust you because you have this problem. And again, I don’t want anyone to know in the school community. I don’t want anyone to know that I have depression! Because I have kids home for play dates. Do you want to leave your child with a mother with depression? Although, my very close friends and neighbours all know I do and probably somewhere down the line it’s going to filter into the school community. I just hope that they respect my privacy. # 5: BPD-II

In another case, it was the participant’s own children who enacted stigmatising attitudes that greatly undermined her sense of value and self-esteem;

[My kids] call me names sometimes, all the horrible names that you call people with bipolar. They just make a joke of it. They’re a little bit embarrassed that they’ve got a mother with this disorder. It’s not something they’re very proud of. My eldest son, he’s not supportive. He’s a bit critical of me. He made a comment the other night that I talk like Ozzy Osbourne [laughs]. Which is a real insult, but he insults me all the time. # 11: BPD-I

In these ways, stigma impacts on disclosure and is a significant factor contributing to strategies of concealment and protracted non-help-seeking;

I didn’t disclose it at work and [if] one of my bosses, who thinks I am the bees’ knees, found out that I had bipolar disorder, [work] would be not available to me, I’m sure. Because his opinion of my abilities would be altered. So it’s not me that’s changed, it’s other people’s perceptions of me, of who I am and who I’m allowed to be. # 16: BPD-I

I’d never come out at work and say I’ve got bipolar or anything, cause there is a stigma. # 18: BPD-II

‘Water Off a Duck’s Back’ It must be acknowledged, however, that not all participants suffered from problematic levels of shame or guilt. Indeed, some participants displayed strong resistance to any form of guilt or regret, even despite behaviour that lead to negative outcomes such as affairs, hurting loved ones or losing friends. The ability to quickly get over things is best summarised in the participants’ own words as: ‘like water off a duck’s back’;

I don’t care. It’s like water off a duck’s back. I think I’ve been through so much in my life that if you want to be my friend, you’ll be my friend, but if not… # 8: BPD-I

I don’t often have regret. Look, if you could get someone to sit here and explain to me how bad I was and why I sucked at everything, I’d sit here and go, “Mmm, ok yep, well that’s an interesting viewpoint”, but you know, it’s water off a duck’s back. I am very much like, “Once it’s been said, it’s done”. If I’ve done something bad, I won’t try and make it up, I’ll always try and acknowledge that the thing occurred, but I tend not to dwell on those things. # 20: BPD-II

Page | 201

I try not to think about it, ‘cause I hurt a lot of people. [But] what’s done is done really. I never talk about it, I just say, “Well that’s a thing in the past, I’ll just get on with the future now.” I can’t help what’s happened. There’s a lot of guilt, probably guilt, but - it might sound selfish - but it’s like water off a duck’s back to me now because I can’t change it. # 18: BPD-II

I just brush it! Get over it! Things like that don’t really bother me, where they should, probably. You might have a tinge of guilt, or a tinge of disappointment but you get over it pretty quick, ‘cause if you didn’t get over it, you wouldn’t do it time and time again like I have. I don’t know if it’s guilt? It would be a form of guilt, but there’s probably another word for it, ‘cause I don’t think I felt the pure guilt for the things I said. It hasn’t really sunk in until just recently, how harsh and how cruel I was. I probably don’t have any empathy at all. It’s probably something that’s not in my head and I don’t know if that’s a part, or a cause, or a by-product of what’s goin’ on. # 13: BPD-II

Of course, it may be that subsuming guilt was an effective way of coping for certain individuals to protect self-esteem;

If one of the most logical answers is, “It’s all your fault”, you’re quite likely to pass that over because that’s just opening a world of [pain]. So it’s sort of like a coping mechanism to put it on the world around you. Because if it’s you, what have you got? You’re wrong. # 20: BPD-II

When you look back at it now, you think, “Well, maybe I should have apologized for stuff that I say” or whatever. But, who cares? Consequences? Ya just don’t worry about them. Doesn’t matter. I don’t want to atone for what I’ve done. There’s no point. I’m not going to go round apologising. I can only change my actions in the future. # 13: BPD-II

However, subsuming guilt can lead to destructive strategies of denial, concealment or unhealthy coping strategies, such as drug and alcohol abuse. Thus, while initially it may seem that bypassing any negative feelings of guilt or remorse, deeper analysis revealed that, in the long-term, there are damaging consequences. Those participants who attested to feeling unaffected guilt or the negative consequences of their past actions turned out to be the ones coping least well. This supports the theory that guilt has important adaptive functions in that concern about one’s effect on others is linked to empathy and reparative action (Anolli & Pascucci, 2005). The presence of guilt may also indicate self-reflective qualities, which are important in developing self-management strategies. This indicates that lack of guilt or empathy may be an indicator of poorer functioning in bipolar disorder, and a ‘red flag’ in terms of treatment and management.

Summary The interaction between shame-proneness, lack of guilt and negative outcome in bipolar disorder are interesting findings in this analysis. Enduring levels of shame and stigma were revealed to be an

Page | 202

issues of significance for a number of participants. As it is argued that an important component of healing in bipolar disorder is the ability to move forward from the negative outcomes of past illness episodes, it is important for individuals who experience high levels of shame and guilt to be appropriately identified and offered support to achieve positive resolution.

Analysis highlights that the duration and intensity of shame and consequences of stigma can culminate in a worsening of affect and prognosis by disabling qualities essential to psychological flexibility and resilience, or by creating barriers to seeking help. These preliminary findings emphasise that shame and guilt-proneness are discrete variables that occur independently from mood and may be factors implicated in treatment resistance cases of or of suicide risk. Individuals who experience a high level of shame, in addition to negative affective symptoms of depression and mania, manifest complexities that go well beyond the confines of medical treatment.

For these reasons, it is suggested that it is important to identify those individuals with bipolar disorder who are more likely to succumb to shame as a result of failure to meet ideals and attain goals. Focus on this issue is particular important for clinicians in order to ensure they are truly accessing patients’ experiences and offering a safe space for them to discuss their most shameful memories. Clearly, individuals with bipolar disorder would benefit from being given proper skills to manage these ongoing threats to self.

Page | 203

PART FIVE Moving Forward

Page | 204

Coping and Adaptation

This chapter attempts to investigate whether individuals have a functional or dysfunctional approach to managing bipolar disorder. Research into how people with BPD-I and BPD-II adapt to the illness has practical implications, as coping styles are good treatment targets. Analysis focuses on how individuals deal with episodes of depression and (hypo)mania, how specific attitudes shape positive or negative coping styles, whether there are changes over time from less adaptive to more adaptive strategies and what aspects might lead to the development of demoralisation.

Exploration of how individuals adjust to life managing bipolar disorder necessitates understanding of practical illness-management strategies in each of the different phases of illness, as well as a more global examination of broader mechanisms of coping and resilience. Analysis of the data indicates that the process of adjustment is continuous, constantly re-negotiated and that there are no distinct coping stages. Coping styles depend on different stages in the illness cycle and are affected by factors such as time spent with diagnosis, rates of relapse, psychosis or hospitalisation. Adjustment is further complicated by family attitudes toward the illness, levels of support and substance abuse problems.

Beyond the impairment caused by the physical symptoms of bipolar disorder, it is the fluctuating instability that proves to be one of the most challenging aspects individuals must learn to cope with in order to effectively manage their condition. As Grounds & Armstrong (1992: 120) point out, “...loss of trust or faith in stability has an insidious effect over time...” In addition, individuals may also have to deal with practical issues relating to work and finances and socio-emotional ‘fallout’ following illness episodes.

Much of the literature relating to adjustment in bipolar disorder relies on the ‘vulnerability-stress- coping’ model to understand illness vulnerability and its relationship to relapse. Illness instability is believed to linked to a complex interaction between stress, life events, environmental, psychological, pharmacological and biological events (van Meijel et al., 2004; Power, 2005; Perkins & Pepper, 1999). Phillips et al. (2007: 308) hypothesised that stress that is not well managed results in anxious distress that precipitates episodes in those with heightened vulnerability. In bipolar disorder, it has been shown that a kindling effect exists - higher levels of stress precede the onset of a first manic episode than subsequent episodes (Phillips et al., 2007). Research by Johnson et al. (2003) argues that stress alters neuronal activity by stimulating nerve cells and a form of cellular sensitisation is involved in the tendency for episodes to occur more frequently and autonomously

Page | 205

over time. Helman (2007) shows that the organism’s response to environmental demands effects the hypothalamic-pituitary-adrenocortical axis and emphasises increased understanding of the pathogenic role of emotions and perceptions in transform stress into illness is needed.

As the experience of stress is commonly implicated in the onset and maintenance of bipolar disorder, stress reactivity is considered a vulnerability marker in bipolar disorder. However, questions remain as to whether stress plays a causal or contributory role in the genesis of bipolar disorder, or simply indicates a failure to adapt to adverse environmental factors in this particular patient population (Helman, 2007). Psychosocial transitions to change have also been implicated in the stress associated with relapse in bipolar disorder. This is typically measured in terms of “life events” stress. However, as Ramana & Bebbington (1995) point out, severity of life event stress is difficult to objectively measure, as it is up to the individual to judge the significance. In considering the relationship between stress and relapse therefore, it is important to pay attention to minor events, or “low severity stressors” as both are likely to impact on symptom exacerbation (Helman, 2007). Additionally, life event stress can also arise from both positive and negative events, such as engagements, birth or promotion. For this reason, stress cannot be decontextualised and subjective appraisals of the meaning of stressful events are therefore needed in order to understand relationshipa between stress and relapse. In order to reduce susceptibility to relapse, preventative measures to enhance stress management is important for coping with the condition.

Beyond stress, it is known that certain styles of coping exacerbate recurrence and severity of bipolar disorder, such as dealing with moods through risk-taking and distraction (Jones & Bentall, 2008). Johnson & Miklowitz (2006: 211) found that various psychosocial variables, such as excessive goal engagement and life events involving sleep deprivation influenced vulnerability to mania. Variables that influence positive adjustment included social support, reduced stress, high self-esteem and meaningful future orientation and cognitive factors such as optimism, humour and belief system values that provides existential meaning. King et al. (2003: 184) suggest that social support, perseverance, determination, spiritual beliefs and the ability to replace a loss with a gain (transcendence), self-understanding and accommodation skills are major protective factors in managing chronic illness.

In terms of resilience, how individuals with bipolar disorder foster strengths to handle adversity will be explored. Russell & Browne (2005) and Grounds & Armstrong (1992) found that resilience variables, such as social support, mechanisms for re-building self-esteem and positive coping styles are key determinants of the intensity and duration of episodes. As the literature relating to resilience is too vast to be adequately covered in this chapter, a few key points useful to analysis of coping in

Page | 206

bipolar disorder are instead summarised. Resilience has been defined as the ability to “...bounce back from adversity and persevere through difficult times...” (Edward, 2005: 142). Resilience is a combination of abilities and characteristics that typically engender adaptational qualities such as adjustment, flexibility and elasticity (Geanellos, 2005). According to Masten (2001), resilience is an “ordinary human quality, not an extraordinary one” while Richardson (2002) argues that resilience can be understood as a “motivational force”, in terms of physical, spiritual and mental energy. Other researchers emphasise that the concept of resilience is not static. For example, Tusaie & Dyer (2004) suggest that resilience can be broken down into domains such as work/school performance, behavioural adjustment, psychosocial adjustment and physical health, illustrating that the idea of “domain specificity” has more practical value that a global definition of resilience. This points to a “continuum of adaptation” rather than a “categorical construct” and, as it is apparent that individuals with bipolar disorder experience cycles of resilience, the concept of multiple domains of resilience may have great utility in further research in this area.

Aldwin (1994: 345) maintains that coping is transformational when change, rather than homeostasis, occurs. However, recurring episodes of mania or depression can result in disruption of homeostasis, where adaptation occurs with loss and/or dysfunction, rather than growth and self-understanding (Tusaie & Dyer, 2004). Mead & Copeland (2000: 321) show that an evolving self-concept and challenging assumptions of fragility and limitation are essential in order to reconstruct lives.

The level of control individuals possess is also an important facet of positive coping, in terms of an individual’s ability to intervene to reduce the severity of symptoms. Control is key to maintaining a sense of autonomy over one’s life. The extent to which individuals feel in control of their illness correlates with levels of empowerment and hope. Research by Lim et al. (2004) suggests that perceived illness controllability is a major factor in the coping process. Accordingly, individuals are typically motivated to act when their sense of self-efficacy is high. As such, it is important for clinicians to understand that it “…is not the desire for the outcome that determines the behaviour, but the person’s belief in their ability to achieve the behaviour that in turn, achieves the outcome” (Lim et al., 2004: 815).

Health locus of control is a relevant construct in investigating coping strategies in bipolar disorder. Health locus of control is known to influence appraisal and the extent to which individuals believe their health is determined by their own actions (i.e: a function of behaviour), or influenced by chance/fate or by a powerful other (Anderson et al., 2008). Shaw’s (1999: 1250) review of locus of control theory found that ‘internals’ are “...more likely to engage in health promoting activities...” Similarly, Williams & Healy (2001) demonstrate that coping is related to patient’s beliefs about

Page | 207

perceived cause, consequences, curability and controllability of illness. Thus, relapse and level of psychosocial impairment in bipolar disorder may be influenced by the individual’s lack of belief in their ability to control mood or behaviour. This finding is supported by a recent study by Anderson et al. (2008: 114) which found that internal health locus of control was the main predictor of adaptive outcome. A central feature of control is linked to having knowledge and information which reduces people’s sense of powerlessness (Bendelow, 1993).

Lifestyle irregularity and the disturbance of circadian rhythms are known to be specific triggers that lead to increased affective symptoms and elevated risk of relapse (Power, 2005; Jones, 2001). For these reasons, shift work, international travel, light exposure, and adapting to a newborn are high- risk activities and events for people with bipolar disorder. This has led to strong emphasis on the importance of structure and routine in mood stabilisation. Many therapeutic interventions are developed on this basis of a diathesis-stress mode and promote so-called ‘rhythm integrity’ in order to enhance course and outcome (Frank et al., 2000). Regulation of metabolic activities and the sleep-wake cycle is known to be vital in achieving lifestyle balance (Lam et al., 2000; Jones, 2001). Bower (2000) argues that consistency of social routines is a protective factor in dampening the extreme mood fluctuations of bipolar disorder.

The usefulness of ‘interpersonal and social rhythm therapy’ (IPSRT) in regulating social rhythms and sleep-wake cycles and dealing with interpersonal problems linked to relapse, as well as the concept of “present-centeredness” central to mindfulness-based CBT have shown some promise in successful self-management of the disorder (Mitchell, Malhi & Ball, 2004; Frank et al., 1997; Ghaemi, 2007). Results of a recent study by Castle et al. (2007) suggests that group psychosocial intervention as an adjunct to usual treatment is effective in reducing relapse and improving functionality.

This analysis thus seeks to identify risk and protective factors that mediate on symptoms. In the following section, key themes relating to the process of adaptation are explored: self-management techniques, practical preventative strategies, cognitive adjustments, illness appraisal, process of acceptance and the importance of support, identification of early warning signs (EWS) and social rhythm integrity.

Self-Management The theme of management is central to any discussion of relapse prevention and coping in bipolar disorder (Berk, Berk & Castle, 2004). Russell (2005) asserts that learning to ‘self-manage’ the illness is invaluable in achieving stabilization, a point-of-view that was substantiated by many participants;

Page | 208

I’ve got good management skills now. I’m a manager. I’m not going to lose those skills. And that’s the thing. Once you become a good manager, it’s not something you forget. # 2: BPD-I

However, it should be acknowledged that the desire for stabilisation and normalcy may vary particularly depending on mood state. As Pollack (1995: 122) suggests, the main challenge for any individual with bipolar disorder is to “achieve the basis to be motivated for self-management”.

Bipolar disorder can seem overwhelming and uncontrollable before individuals learn appropriate management strategies and employ wellbeing techniques during periods of euthymia. The following table summarises the common strategies;

Massage Mood diary Employment No coffee/alcohol Yoga/Meditation Support group Reading Omega 3 Hobbies Daily routine Talking to family & friends Diet Sleep Exercise Medication

0 2 4 6 8 10 12 14 16 18 Wellbeing strategies (Total sample n=17)

Choices and Consequences Those individuals who feel they are able to effectively manage their episodes believe it is possible to achieve balance and stability through decisions and choices before the illness takes hold and insight is lost. For newly diagnosed individuals, understanding that there are choices available to them in terms of early intervention, preventative action and wellbeing strategies is greatly encouraging, and helps build a sense of efficacy to assuage potential demoralisation;

Every choice has a consequence. Everyone has choices. You have a choice as the whether or not you take the medication, or you have the choice to say, “I’m not going to take my medication” and then the choices you get in this society if you don’t take your medication, are not pretty choices. So I choose to take my medication and listen to what I’m advised. Ultimately, you have to help yourself. And it’s through choices you make. # 8: BPD-I

Page | 209

I know now the things that are good for me. And I know the things that make me happy. And I know the things that aren’t good for me. So that comes to a choice. It is a choice. # 7: BPD-II

Developing self-awareness of the consequences of illness is an important stage in learning to cope with bipolar disorder. While it is possible for some individuals with bipolar disorder to choose behaviour that contributes to stability, such choices are not necessarily easy or intuitive and remain entirely situation-dependent. For example, one female recognised that she was in the early stages of hypomania during the interview. As she explained, at that point she had a choice: to fuel the buzz by choosing to socialise following the interview, or choose to head off incipient mania by going straight home to rest. Ultimately her decision was based on what she was willing to risk on that particular afternoon;

It’s just a matter of deciding which [decision] you’re going to go for. Which one is going to cause the most pain? It’s just great you can weigh it up, and realise it’s simple managerial skills of your own body. # 2: BPD-I

Typically, it is experience over time that expands this self-knowledge and helps some individuals learn precisely when they can let moods flourish, and when they need to intervene;

It’s taken me a long time, but I’ve learnt how to live with it. And I know how to control my mind, to harness it and when I need to get out there, I know how to pump it up and I know how to bring it down. # 8: BPD-I

Each episode I’ve kind of got my invention happening quicker, so I’ve been more tuned in to subtle changes. So I can notice the change on the first day, of either the high or the low and take the medication two or three days earlier than I used to. And that sort of stuff seems to make a difference. # 9: BPD-I

Awareness of the negative consequences that inevitably follow euphoria proves to be the main factor motivating behavioural management and wellbeing strategies;

I had the insight to know that it was going to end in tears. The fact that it wasn’t going to last and someone was going to be crying and it was going to be me. Because I’m so terrified of the consequences of getting sick again, the consequences in terms of behaviour, consequences in terms of cognitive deficits, consequences in terms of relationship break-ups and things like that, I’m really vigilant. Really vigilant # 16: BPD-I

It’s very frightening. And after that depression I said to myself, “I will do anything, anything to not go through that again.” I have meditated every day since then. I have exercised every single day since then. I have been vigilant in checking my feelings for depression and things. # 15: BPD-II

Page | 210

Knowledge that there is a price to pay for pursuing a high is a fundamental step in managing the condition;

I don’t want to pay the price. Before, I didn’t even think about the price. Didn’t even know there was a price to pay. I’d keep going, keep going, keep going, until I was in hospital. Now I know that the price is really tight, and I don’t want to pay that price. # 2: BPD-I

For others however, evaluation of risk and consequence is made difficult by impaired cognitive processes that affect impulse, reaction and insight;

The highs and the craziness were just gettin’ beyond any acceptable levels and I was just affecting everyone. I was alienating everyone. The highs are probably more destructive than the lows, because the lows, you just cruise, you might not want to go out, you might not want to do other things, you might not see the happy things in life, but the highs – I’d just get myself into so much trouble, I’d be drinkin’, I’d be gamblin’, I’d be fightin’, I’d be arguing, forgetting my place in life and things like that and just doing things, the consequences of, just keep coming back. I do really live in the moment and I have no thoughts of consequences and stuff. When I’m up, it’s like, “Who cares?” I can’t remember a lot of it [but] just the hurt that you create for people when you’re on these massive highs, but you just don’t realize it. And consequences or reactions are just nothing, they don’t exist. # 13: BPD-II

How individuals assess risk and consequence is therefore revealed to be a relevant factor in the self- management of bipolar disorder. While most participants acknowledged that the temptation to pursue a high is strong, there was a difference in the way this temptation is managed. Individuals are most likely to weigh up the costs and benefits of pursuing a high versus early intervention and typically, self-management decisions are constantly negotiated, almost on a situation-by-situation basis;

Like any plan, you just have to know what you want to sacrifice. Like, I might want to do something a bit spontaneous tonight and go to bed a bit late. But I have to know that I’m going to have to pay for it tomorrow. It’s just, you’re a grownup, there are consequences. And sometimes, you are a bit naughty. But you get to the point where you don’t want to sacrifice a beautiful morning’s sunshine for your late night high. # 2: BPD-I

I do whatever it takes not to stay on that high. I just don’t think the highs are worth it. You might be funnier but overall, you pay for it, so it’s not something that you want to pursue, really. # 15: BPD-II

Analysis revealed that certain individuals were more inclined than others to avoid any behaviour that induced a high. This likelihood appears to be associated with factors related to temperament. Those with more conservative personalities seemed more likely to stay highly vigilant over symptoms and further research into this association between a high level of self-management and

Page | 211 personality factors is thus recommended. This indicates that there are varying levels of regulatory control. In bipolar disorder, regulation involves weighing up short-term versus long-term value (Ochsner, 2008: 54). A key aspect of “choice-based regulation” is understanding that there are certain stages within the phases of illness where the individual does have control over consequences. This is an important realization that helps counteract the helplessness people often feel in the early stages learning to manage the condition.

Importance of Control Recognition of the need for control is often the first step in practical management of the illness. This typically requires an ability to separate the self from the condition, and a realistic understanding of the work involved in maintaining control;

I think of it as a condition, not who I am, but something that I need to control. Like a 400 m race, something’s that within my control. Some days, I’m going to be running around that 400 m track, and it’s going to be hard work, and I’m just going to have to put a little bit more energy, or on the particular day, I’m just going to have to make it to the end. It’s not going to be a fabulous, gold- winning event every time. # 12: BPD-II

It was just out of control. I need to learn to control the ups and downs, control my anger and things like that. So yeah, I’m just trying to manage it more constructively, like me control it, rather than it control me, in a way. I’m optimistic for me in the future, that I can learn to control it and just mellow out, hopefully. I know I’m going to have a setback every now and then, I know it’s not going to be all roses and plain sailing. [But] I’m extremely hopeful that I can control it. # 13: BPD-II

I’m heaps more in control. It’s nice to be able to just ride out the bumps, smooth the bumps out, instead of reacting, going ‘oh no, you know here we go again’. If you can control it close to that line, it’s controllable, it’s not a burden. # 18: BPD-II

For one participant, gaining control was fundamental to her recovery and offered a chance to live the life she wanted;

Do you know what I hope for? I hope I can get it under control enough, forget about the past, control it enough so that I can sustain my friendships with my mother, my sister, my Dad and sustain a healthy relationship and have my own children. That’s what I want, more than anything. I just hope. And I have to be really positive and it’s up to me, because other people have done it, and I’m not extreme. So I just have to be positive, no more being negative. It’s just a matter of me having the strength and the courage to control it. # 12: BPD-II

However, participants also recognised that a fundamental element of achieving control in bipolar disorder is also recognising what aspects of illness cannot be controlled;

Page | 212

I just don’t want it anymore! I’ve had enough. I don’t want to be on any medication, I don’t want any more counselling, I just don’t want it anymore. But the fact is, that I do. And as much as I think it’s controllable by me, I’ve tried and I can’t do it by myself, so I have to get help. That’s just hardcore fact. # 12: BPD-II

Others found that fundamental traits of their nature prevented their ability to develop early control;

It’s opposing what I need to do control the bipolar, because what I want to do is overload myself and do this and that, and that’s not what I’m supposed to be doing. It’s just a conundrum you just have to live with. # 9: BPD-I

Once a high is established however, particularly in the case of BPD-I, it seems it is impossible to intervene and change behaviours to re-establish control;

You can’t treat the illness by telling someone to change their behaviour. It’s not like behavioural modification. There’s a reason why people can’t change their behaviour. It’s part of the sickness that they can’t change their behaviour. It’s a symptom, if you like, of the illness. You can’t change the negative behaviours you’re carrying out. You can’t do it, because your body forces you to, the urges in your body are so strong, they force you to carry these things out. You can’t change your behaviour once you’re in a high. There’s no kind of, ‘cross over the red line’, you know what I mean? It’s like trying to act sober when you’re just drunk. If you’re really drunk, you can’t act sober. If you’re really on a high, you cannot act, normal. # 2: BPD-I

As soon as mania starts, it’s a really altered state. So it’s really quite difficult to [intervene]. You know how people say, “Well you really shouldn’t do that”? Well, you can’t not do that, it’s just how it is. # 9: BPD-I

This reality indicates that control can only be successfully achieved at certain phases of the illness course, and points to the value of intervening in the early stages of episodes.

Preparedness Given the inherent unpredictability and recurrent nature of illness episodes, a key aspect of gaining control in bipolar disorder is preparedness;

I want to be prepared next time, I know that I’m going to get depressed again and I know that I’m going to get manic again and I want to be prepared. I know what to expect next time. # 11: BPD-I

At least, I can prepare for [relapse]. So you know there’s a certain advantage, in the knowledge. # 14: BPD-II

I think the whole thing of unpredictability, building that into your life. Being prepared. Your confidence can only come from having skills, not from particular outcomes. Your preparedness [has to be] there. 9: BPD-I

Page | 213

I’ve got a lot more confidence now. It used to frighten me a lot, when the depression was comin’, but now it doesn’t scare me, cause I know if it does come, I can beat it. You sort of bring out strategies in yourself, instead of cowering in the corner, so to speak. # 18: BPD-II

It’s just this mad little vision that I have in my head of what my life was and what my control was - Devil on one side, the angel on the other, going, “Do it/don’t do it”. If there were some stop signs every now and then I might have listened to the little white guy instead of the little red guy more often. # 13: BPD-II

Triggers and Early Warning Signs Treatment interventions emphasise the predictive value of early detection and the importance of recognising early warning signs (EWS) and identifying triggers in preventing relapse. Russell (2005) suggests that mindfulness is a crucial skill in managing bipolar disorder, as it helps individuals know when to intervene with stay well strategies and when to ask for help. Vigilance over behaviour, energy levels and mood is thus important.

While certain themes arose - such as increased irritability, excessive crying or marked change in sexual behaviour and confidence levels – in general, participants’ knowledge of their own “individual relapse signature” (Lam & Wong, 2005) was limited. Given the fact the average number of years lived with a diagnosis of bipolar disorder in this sample was eight years, it is surprising that greater knowledge in this area was not demonstrated. This situation underlines the importance of post- diagnostic education.

EWS are unique and idiosyncratic. For example, mood elevation can be signalled by choice of clothing, or music;

Look, some of my warning signs, is the mini-skirt [laughing]. Because there’s always been wild crazy times when I wear it. Other times I’m like, “How can I possibly wear this?” Because it’s the tightest, shortest, most ridiculous – you cannot bend over in it. You have to be standing up all night, can’t sit down. So, yeah, things like that I would never normally wear, but then you go [conspiratorially], “Oh, I know what I feel like wearing…” And you get all excited. # 14: BPD-II

See, music’s a big part of mood too. If I need to wake up, I’ll put on lots of Rock to start me up. I’ll listen to that, and it’ll hype my mood. But then if I have to get to sleep, I’ll have on a Choral works, that will soothe my mood. # 8: BPD-I

Many participants with BPD-I found it difficult to separate EWS from symptoms. This could be because transition from symptom to full-blown episodes occurs too quickly, and often involves loss of insight;

Page | 214

An early warning sign? I don’t think you can have them. I don’t agree with that. I think an early warning sign is actually a symptom. # 2: BPD-I

I’ve identified that all my triggers are sort of happy triggers. So [before a wedding] I battened down the hatches if you like. I stopped going out a couple of weeks beforehand, I stopped drinking anything and tried to be really good. # 9: BPD-I

However, this same participant went on to question the value of identifying EWS given that the information did nothing to help prevent escalating mania;

I can’t really wave the flag and say everything I do is working, ‘cause obviously it’s not working at the moment! It’s not working at all. I can tell you, I mean I can predict when I’m going to get high, but I can’t stop it! [laughs] # 9: BPD-I

Evidently, the type of EWS varies depending on the different phases of the illness;

With the mania, there are certain warning signs. The masturbation thing at 3 o’clock. Staying up at night. At midnight I’m on the computer, don’t go to bed. Racing around and not being able to sit down, [even for] a cup of tea. When I can’t sit still and watch TV, that’s another warning sign. # 16: BPD-I

A typical marker of a slide into depression was increased rumination;

A warning sign or symptom is spending too much time thinking. And being over-anxious about things, socially over-anxious. # 7: BPD-II

I’m so much better at pinpointing when it’s coming on. The thoughts about yourself are always the first thing, and now I’m able to pick that up better. # 15: BPD-II

However, it is a matter of concern that one individual’s warning sign of depression was when he began to ruminate on planning a serial massacre;

There are many triggers for me to identify each of my extreme moods. And one of them, for depression, is when I start thinking about harming other people again. And not just possibly, but you know, planning and systematically going out, you know and doing something. # 17: BPD-II

Evidently, the usefulness of identifying EWS depends on the success of intervention strategies put in place, such as upping medication to stop ‘over-revving’, asking for external feedback, taking sleeping tablets and so forth;

I’ve got a list of them. I know when I need to calm down, or I need sleep. And I know when I’m running on adrenalin. I know what is normal behaviour, for me. # 8: BPD-I

Page | 215

I’ve always known that sleep is my friend. So I might take half [a sleeping tablet] and I’ll do extra exercise. I won’t read or do any [work], I’ll try and watch boring shows, I’m very aware of how to get myself back down, because I’m not after that high, because it’s not something I’m looking for. # 15: BPD-II

Sleep Problems Much of the research on triggers and EWS in bipolar disorder implicates impaired sleep and disrupted circadian rhythms. Sleep deprivation is significantly associated with manic onset and sleep disturbance is hypothesised as the final common pathway to mania (Jones, 2001; Jones & Bentall, 2008). Participants’ accounts corroborate the idea that erratic sleeping patterns are a key marker of relapse;

I was completely and utterly exhausted. It was almost like my brain had gone “DRJJJJ”. It was like my brain was just so over-run that it was just this massive feeling of fatigue. And it was like, “Ahhhh I just can’t go on!” I was just totally shattered! I’d never felt so physically drained. I was finding it difficult to think properly, you know, I was getting my thoughts sort of muddled. # 10: BPD-I

I find that I wake up at five in the morning and I feel like I’m ready to go, ready to do something. # 9: BPD-I

I didn’t sleep well. I just thought that was me. I’d be going pretty full-on and raising the kids and I just couldn’t sleep. One night I remember putting my head on the pillow to go to sleep, and I felt like I was on a ferris wheel, just spinning and spinning and I couldn’t even lie there, I had to get up, because otherwise I was just spinning out of control. Might sleep for half an hour every night, it was just incredible. I was just so tired. So tired. So strung-out. I looked like death warmed up. I could see how it could kill you, if you just went on and on and on, if you didn’t stop it. # 11: BPD-I

I was with [my boyfriend] at the time, he couldn’t believe it, he was like, “What are you on? Seriously? What are you on? Like, how can you not go to sleep?” I would just doze off and then just wake up, full of beans, fully READY to go! Like, full-on, I was just so amped, all the time. And it even got to the point when it started to be like, “What am I going to do tonight? I’m not going to sleep.” # 14: BPD-II

Feeling exhausted, I won’t even say most of the time, it was all of the time, and it didn’t matter what I did, whether I slept. The feeling that no rest recovers you, basically.# 5: BPD-II

However, impoverished sleep patterns did not necessarily signal to individuals that they were becoming unwell as they had grown accustomed to living with erratic sleeping habits;

I’ve had a ten minute sleep on the lounge and I’ve woken up and felt so refreshed that I felt like I’d had a few hours. Ten minutes! A little nap can make you feel alive again. I’ve never been a big sleeper. If I get four, five, six hours, that’s the most I ever get. That’s a good night. # 11: BPD-I

Page | 216

I can go days and nights without sleep, and then when I get a chance, I just crash and catch up. # 13: BPD-II

It seems that it does take time for a pattern to emerge, linking problematic sleeping with the beginnings of a high or low episode. Even when sleep becomes non-existent, or exhaustion is so severe it interferes with the ability to function, individuals are often surprised by the period of illness that subsequently develops.

Over-Reaction Aside from sleep problems, over-reaction also surfaced as a common indicator of when someone was becoming unwell. Research by Russell (2005: 99) supports this finding, suggesting that successful self-management of bipolar disorder involves the ability to differentiate between “...typical reaction to an event and reactions that may indicate an imminent episode of illness.” As the following participants illustrate, identifying extreme patterns of over-reaction provided a good signpost for intervention;

It’s just when the intensity or the appropriateness of the reaction is not quite right is when you need to learn what you can do to stop it. If I let it go to a certain level, it’s like, see you later! # 16: BPD-I

I either get happy that I’m happy, pissed off that I’m pissed off, or sad that I’m sad. Those are some of the cues of thought, the flags that will indicate to me when my moods are pathological, rather than to the extent of a normal reaction. # 17: BPD-II

Mental Stimulation Increased mental activity, in terms of intense periods of focus and stimulation, was another significant trigger for many participants. A lot found that working late at night proved particularly problematic;

So many times, I’d like to do work at night-time. But I can’t. I’ve learnt that if I do work at night, I go off on a hypomania episode. # 15: BPD-II

At night-time, like if you suddenly decide you want to write an essay on ‘American Pie’ by Don Maclean, you know you could do that, but you’re probably going to get into a high and not sleep for too long. That’s even inducing a high. Starting a project. Getting focused on something, getting focused on getting excited, putting emphasis on something. Thinking. # 2: BPD-I

I get all these great ideas, all these absurd ambitions. And when I successfully engage my intellect, I can induce the euphoric episodes, quite predictably in fact. # 17: BPD-II

[Mania] got triggered when I was making plans as to what to study this year. I’d shown some ideas to a couple of academics and one of the lecturers rang me up and said, “These are great ideas, you

Page | 217

should do a PhD.” So, in between the phone-call and the meeting with him, I got elevated. I was just excited. # 9: BPD-I

Lifestyle Balance and Rhythm Integrity Effective adaptation to living with bipolar disorder requires individuals to recognise the interplay between their moods, sleep patterns and lifestyle routine. Lived experience over time taught many participants the value of structure and benefits of establishing routines in managing their illness;

In the morning, I know I have to do certain things, like have a shower, make my bed, put my computer on the other side of the room, so I don’t get things entering my head like, “Let’s write an essay, my computer is just there.” So I have to actually lay down precautions, and that’s just in a little routine. It’s just getting into a mode. # 2: BPD-I

Structure is very good for me. It’s very good, even when I’m well, even though I mightn’t think it is. I know it is. And work is good for me. And structure. # 7: BPD-II

The importance of attaining lifestyle balance was also an important factor in maintaining stability. Strategies included things such as a career change to more flexible working hours, renewed study, healthy living;

If you look at it in a positive way it’s all about maintaining a healthy balanced lifestyle and if you were suffering too much stress or were indeed just living too hard, bipolar is a bit of a wake-up call to change your lifestyle and find out what really is important. # 10: BPD-I

A few years ago I was thinking more distinctly about a long-term strategy so I took some more time off and I did my Dip Ed, with the view to going teaching. It’s a career where there’s a bit more of a balanced lifestyle. # 4: BPD-II

My stable day would be some exercise, some yoga, three good meals, two snacks, a moderate working day, a telephone call to Mum. And then on a day off, a good read of a book and a play on my new computer. Something like that, something for every part. Go out with my friends of a night and have one or two glasses of wine, some dinner, a talk, some exercise throughout the day, maybe the markets, just really, hippy kind of relaxed, nice day. # 12: BPD-II

I’m all about diet and CBT, that’s my aim from now on. Getting up in the morning, putting on some bright clothes, opening all the blinds in your house, going for a walk everyday, doing something nice for yourself everyday. # 11: BPD-I

Some individuals work hard to actively minimise their chances of relapse and vulnerability by following a strict regime of activities in the well times in an effort to maintain their health on a daily basis;

Page | 218

I have a sense, deep down, of what’s going to help and I hate doing it. It’s like having to go out in the snow with a bikini on, you know it’s going to hurt, you know it’s going to be horrible, but if you can just get going, then you know you’re going to benefit later. # 15: BPD-II

Stress Reduction Specific stress-reduction strategies are also an essential component in achieving balance and lifestyle regulation. After successive episodes of unwellness, many participants were forced to recognise that finding ways to significantly reduce their stress levels was necessary to protect against illness vulnerability;

Stress I think has a play in it as well. I certainly actively try and make conscious choices and stay away [from things] that I know will create stress in my life. # 4: BPD-II

I made some really strong boundaries around what I could and couldn’t do. I needed to have at least a day to myself, I needed to walk every night. Not loading myself up with very much at all. I take on what I feel I can manage and not put pressure on myself to do it if I can’t get it done. Go to bed early. Try and avoid drinking coffee and alcohol – they’re not good at all, for me. Resting. I sleep every day. # 5: BPD-II

I’ve got a brother, he’s a big stress in our lives, huge anger problems and won’t get help. Anyway, the decision that I’ve made through all the trouble that he’s caused me and my family, is that I’ve actually cut off contact with him. He’s just so volatile. # 7: BPD-II

Routine Versus Spontaneity Achieving this lifestyle balance is often challenging, particularly because it typically requires behaviour and habits that run counter to the tendencies of the cyclothymic personality. Some participants acknowledged the difficulty maintaining such strict lifestyle modifications, finding that they eventually gravitated back to their more outgoing natures. In some cases, individuals can find themselves rebelling against perceived boredom and diminished life goals required by more balanced and routinised living;

I lived very quietly, I have to say that. I just got a 9 to 5 job, I kept my head down and I started going out with this fellow who was quite a home-body himself. So we just kind of bunkered down together a little bit. Just kept my work life pretty simple, kept myself healthy [but] I would say, after five years, I was just really bored. I was really bored, cause I’d kept my life really small. # 9: BPD-I

I went back to my nine hours a week, went back to being safe, not earning that much money. So, I was a good girl. And from then I just did the plodding along thing again. # 15: BPD-II

Page | 219

In such cases of living life ‘small’, there is added risk that yearning for excitement and adventure, heightens the temptation of a high. As Jamison (2004: 184) illustrates, the “ennui of conventional life” can be a difficult adjustment for many people with bipolar disorder who are used to a sense of adventure arising from abundant energy and ideas;

I’m a bit heavy on the accelerator. And balance is not my natural thing. And unfortunately, that’s what you’re supposed to do with bipolar. My natural personality wants to go 125% and you know, it doesn’t sit very well with the lifestyle you’ve got to lead. I think there’s also part of you that just has to recognise what sort of person you are, and I can’t turn into a sort of tree-hugging, meditating sort of person. I just can’t. I’m still the same personality, but dealing with all of this. # 9: BPD-I

Optimal coping therefore requires adaptation and management of routine at an appropriate level of homeostasis, personality and lifestyle expectation. Appropriate strategies to manage boredom and the ability to find balance between spontaneity and stability are therefore important skills for people with bipolar disorder;

I think continual study or learning the guitar, things like that, can really stop boredom. I think that’s a really healthy way for me to prevent boredom. # 12: BPD-I

That’s the only thing I’m scared of, is boredom. When the depression’s comin’ on, I’ll keep movin’, I’ll do somethin’, go for a drive to the National Park, keep movin’ to keep the demons at bay. # 18: BPD-II

Preventative Measures Participants discussed a wide variety of preventative strategies to help manage vulnerable times, from taking time off work, walking daily, diarising, using drugs, being aware of menstrual cycles, talking openly about the illness and living in the moment;

Last [time] when I was getting high, I had this feeling that I was getting really fed up with work, so I took a day off, cause I was worried that I was going to quit. So you can do little things to make sure you’re not going to do something stupid. # 9: BPD-I

I write in this diary when I’m manic about everything that’s going on in my mind, all the problems in my family and issues and all that sort of stuff. # 11: BPD-I

I do notice a difference if I don’t have enough time to just for a walk in the sun on a sunny day. # 4: BPD-II

If I take my tablets and if I rest during the day and if I seize the day as it is, then I’m home and dry. # 19: BPD-I

Page | 220

If I can feel it comin’, I go for a walk, or mow the lawn. If I can feel it happening [wry laugh] then I will try and occupy myself with something constructive, let my wife know. # 13: BPD-II

I know when I’m pre-menstrual, I’m so much worse. But now, I double my Lexapro dosage, seven days before my cycle is due to start. # 8: BPD-I.

I’ve never, ever spoken to anyone candidly like this. And I think, for me to get it out there and for me to talk about it, you know, maybe this is what a lot of the people need, to be able to get it out there. # 13: BPD-II

I live in the moment. As of here, right now, I feel ok. I’m a believer in - nothing else is happening except right now, here. Nothing’s happening yesterday, nothing’s happening in tomorrow. If you stay in the moment, you’re ok. Because this is reality. # 21: BPD-II

However, the most common strategy by far was exercise, that appeared to have dual benefits in lifting mood and self-esteem;

That’s really what I want to get across, is that swimming saved my life, on many occasions. Doing laps. It’s so hard to start, like, you can’t imagine being able to get in the water even, but once you going, because you have to breathe so hard, you can expel so much energy. It just gives you that little bit of relief. You’re still depressed, you don’t come out the depression like that [but] with swimming, you only need to go half an hour before you feel that aggravation sort of settling down..# 15: BPD-II

Certainly, exercise’s been one that I’ve learnt more recently makes me feel enormously better. I’m so lucky because it definitely gives you a lift in mood, and self-esteem to know that you just swam a good amount, or that you just did a good run. # 14: BPD-II

Education and Information Seeking There was little evidence of information seeking following diagnosis, which is a matter of concern given the benefits of knowledge in illness management. It was also apparent that provision of adequate information by clinicians was limited, as previously discussed in Part Three. However, some participants did have access to education programs following admission into private clinics. These individuals had the most positive experience of education across the sample, which highlights the benefits of information sessions in the early stages of illness management;

For someone like me, who was desperately ill, it was very insightful. # 16: BPD-I

It’s a fantastic program. Very good. Really, really full on, but also very helpful, about depression and anxiety and how to manage it on a daily basis. I made some really strong boundaries around what I could and couldn’t do from then on. # 5: BPD-II

Page | 221

The last time I left hospital, I then attended a 12-week Day program. And it was very good, at that time to just bridge that transition. # 7: BPD-II

It must be recognised however, that the level of information required varies depending on individual’s particular coping styles and personality;

I do not read about the illness. I do not read about the drugs. I don’t want to know about them. And it’s not because of reasons of denial. I believe that education is really great for prevention, but sometimes with a mental illness, ignorance can be bliss, with long-term effects of medication and things like that. I don’t want to know about it. I have to be on it, so you know. # 8: BPD-I

Clearly, more research needs to be done on the process of information seeking and provision of education within the public health sector.

Psychological Adjustments Learning to cope with the reality of long-term management of mental illness also requires psychological adjustments. A key strategy used by many participants to endure episodes of depression is to focus on the knowledge that the episode will eventually pass. The ability to maintain awareness that the negativity and desperate thinking experienced during depression are symptoms of a broader pattern of illness is a useful tool in retaining perspective and control;

Today when I go through a stage of being a bit flat, I sort of say to myself, “This is only state of mind, it’s not going to hurt me, it’s not going to physically hurt me, I’m ok. Right here, right now, I’m alright. Yeah, it’s slowed me up a bit, yeah it’s not that pleasant, but generally overall, I’m ok.” # 21: BPD-II

I did get [suicidal] feelings but I’d override them with commonsense to say that, “This is only part of the disorder that’s making me feel like this”. If I’m startin’ to get depressed I say to myself, “It’s not really that bad, it’s just the disorder, there’s a chemical imbalance that’s puttin’ you down there, it’s not as bad as it is, get up and get out and do something to get it off your mind and it’ll pass.” # 18: BPD-II

One thing I’ve started saying to myself recently is that, “Ok, you just don’t feel very good right now, but generally things are pretty good, for you”. You know? There’s lots of things that I am pleased about. # 14: BPD-II

However, the ability to retain belief that an episode of depression will eventually lift was difficult. Even after individuals had experienced recurrent illness episodes, in the midst of lows, the knowledge that they are battling an illness can dissipate. In many cases, participants had to rely on someone else to remind them the depression will pass, which underscores the importance of a support network and external feedback in the management of this illness;

Page | 222

You get sad and then you get more sad and you think, it’s never going to end. And having people around you, like my sister and my Mum, to say, “It’s not going to be forever, just get through the next few days and you’re going to be fine.” # 12: BPD-II

I don’t remember what the good was like. I don’t remind myself of that at the time, when I’m down there. My husband says to me, “You know it’s going to pass”. # 7: BPD-II

Revising Expectations Another factor in adjusting to the consequences of bipolar disorder was learning to revise expectations and not ‘aim for perfect’;

In some ways, it is sort of accepting I may only get Second Class Honours, or do a year of coursework and take a more moderate step forward, not necessarily this whole perfect thing that I would have otherwise tried to do. With managing, as long as I get through three quarters of what I try, maybe that has to be good enough? I shouldn’t wait for this perfect day to get through. # 9: BPD-I

Allowing oneself to make mistakes, adjust to setbacks and learn to take ‘one-day-at-a-time’ were also highlighted as potentially useful strategies;

I’m learning. I’m not as hard on myself as I was. If I made a mistake, it was a real beating. I’d be kicking things, because everything had gone wrong. But I just accept it [now. Tomorrow’s another day, you know? That’s very freeing for me. I really enjoy my life today. 21: BPD-II

If [I] could probably just go with the flow today, just run the 400m at an 800m pace and it’ll be all over tomorrow. But [I] don’t! I think that I could have better control over it. I wish that I could accept that it’s a real disorder, because I think that it might help me stop being so…perfect. It would help me have my bad day and just go through the motions. # 12: BPD-II

Attitude, Acceptance and Accommodation How individuals appraise cause, meaning and significance of bipolar disorder does have a bearing on the way they respond and cope with the illness. Some participants appeared to have a more ready acceptance than others due to their understanding of the genetic and neurobiological basis of the disorder;

I think it’s what you’re born with, it’s a hereditary disease and you just have to live with it, much as you don’t want to. I accept my lot. I mean, there’s nothing I can do about it. Mostly I can live with it. I mean, I’ve got no choice, I have to live with the disease. # 6: BPD-I

It’s definitely a chemical imbalance. Definitely. What the chemicals are, I don’t know. But it’s definitely a chemical imbalance. # 8: BPD-I

Page | 223

Other participants did not spend time questioning ‘why?’, or over-analysing the significance of the illness;

You have to go, “It’s not my fault I have bipolar”. It’s just one of those things. # 9: BPD-I

Shit happens! Doesn’t it?! And that’s all there is about it. # 3: BPD-I

Maybe [God’s] given me bipolar that I can manage it, learn to live with it, and then be able to show people, “Hey, I’m an example of how you can live with the disease”. Not question why I’ve got it or whatever. It’s a silly question. How am I ever going to know? # 21: BPD-II

I feel that so much of my life at the moment is spent on staying well. But you know, this is reality. And yeah, I just don’t let myself think about it. I just have to accept that this is where we are. And that this is what was meant for my life, I don’t know why. But if you think about it on a philosophical level, this has happened and, what can I do? I can either sink or swim. # 5: BPD-II

Others accommodated the disorder by accepting it as an innate part of themselves;

I don’t see it as a disease, or as a disorder. I see it as, my name is -----. My neurotransmitter dysfunction, plus my personality, plus my conditioning, plus my conditioning, has added up to create a life. That’s what it is. And it’s a name for it. Not every case is the same, because your experience of it depends on your personality, on your environment, on your conditioning, on all these other external factors. So I don’t just see the term bipolar disorder meaning mainly a neurological imbalance in my brain chemistry. # 2: BPD-I

For some participants, the process of adaptation was aided by gaining a wider perspective on the reality of ill-health and suffering in general;

You just live with it. I can’t cope with whingers, you know, I think, my god, there’s so always someone out there with a bigger problem than you! Get over yourself! And just do it! # 8: BPD-I

However, for the majority of individuals, adaption was a fluid process that developed and was constantly re-negotiated at different stages;

I s’pose it’s just wisdom with age. You realise that it’s a very long process that you really do have a mental illness, that’s going to be with you for life. Just experience after experience, after depression after depression, you know, you’re banging your head against a brick wall and you realise - this is your lot. This is what you’ve got and it’s not going to go away, you know? You have to have what you have to have. I mean, I’m not Robinson Crusoe, everybody’s got something. I mean, no-one goes through life without some kind of difficulty, or suffering, whether it be a brush with cancer or marriage break-

Page | 224

Importance of Support Networks Participants also highlighted the importance of support in adjusting to bipolar disorder which is in line with research findings. Not only do support networks play a vital role in the recognition of EWS (Grounds & Armstrong, 1992), but they have a protective effect on resilience variables, such as self- esteem. The importance of feedback in managing lack of insight is also judged as beneficial. Two participants admitted it easier to notice EWS and comply with preventative measures with the support of external feedback;

Now I know [if] my husband says something very gentle like, “You know, do you think maybe you should come to bed now?” Or, “Don’t be up too late”, I have to take that on board and I have to think, “Ok, I am revving”. # 16: BPD-I

[My second wife] knows everything about my background and the difficulties that I’ve had with depression and so on. We’ve certainly got a much more open relationship, I feel much more comfortable now telling her if I’m experiencing those kinds of things. In fact, I’m partially reliant on her, and to have somebody that’s there and knows you well, all the time, I mean, is actually quite important to identifying when you might be having trouble. # 4: BPD-II

Having access to reliable and understanding support networks that offer practical help, or simply provide time and space to heal, were identified as crucial factors in the coping process. All participants were grateful for support provided by parents, spouses, family, friends, children and work colleagues. For some participants, awareness of the love they hold for their family provided inspiration to endure through tough times;

I’ve got to keep going, because suicide’s a selfish, it’s a selfish thing. All it does is hurt the people that love you. And I love them so much that I don’t want to hurt them, so I’ll keep going as long as I can. So it’s just a matter of being as strong as I can. # 3: BPD-I

Probably the biggest spur I have to change, is probably the effect I have on other people. # 20: BPD-II

Children do help, because you love them so much, and that does make me want to live. Children are like a balm. It’s real. I know I’m not going to die, because I’ve got to live for my little girl. I see her little face and I love her so much, she can’t not have a mother, you know? She couldn’t do without me, no way. # 15: BPD-II

When examining the protective effect of social support, it is of significance that the two participants who openly discussed not having anyone to confide in were also the individuals with the most severe drinking problems;

Page | 225

Maybe if I had someone really close I’d sat down and spoke to, maybe we could’ve worked out somethin’ a lot earlier. #13: BPD-II

Never. Nup. You got that weakness thing too, you know, sort of the male bit, you don’t sort of talk about that stuff. No, I didn’t say it to anyone. # 18: BPD-II

Sentiments were mixed however, when it came to discussing the importance of support groups and perceived usefulness clearly depends on personality, emotional needs, phase and stage of illness.

Lack of Positive Coping Skills In general however, the discipline needed to maintain wellness during asymptomatic periods was not common and indicates that many individuals with bipolar disorder are yet to recognise the preventative potential of daily wellbeing strategies. Indeed, a significant number of participants admitted they felt like they were not coping at all and displayed a distinct lack of knowledge on how best to help themselves, particularly in managing episodes of depression;

To be honest, I don’t think I’ve learnt many things that have helped me cope with depression. I don’t think I’m very good at coping. I wouldn’t feel comfortable to share my knowledge with someone else that was getting newly initiated into depression. I’d be a bad person to talk to because I wouldn’t have many good things to say about it. # 14: BPD-II

I don’t have any answers, so really, all I can do is bow out of the game and go back to the dirt. And I think that’s at least personally noble, if not somewhat misguided. # 20: BPD-II

If I could go back and tell myself in 2000, when I’d just got out of hospital, and was thinking I might get the right sort of treatment and get my life on track, that in 2008 you’ll still be going through the same problems, you’ll be no more a man than you are now, I probably wouldn’t have had the will to go on. It’s only the prospect that eventually I’m going to figure out how to change my life that keeps me going. But that’s not indefinitely sustainable. I’m at least as unhappy as I’ve ever been before. It’s difficult to maintain hope. The only thing that keeps me going is that I can’t draw any conclusions about the hopeless of my life because I haven’t exhausted all possibilities. I’m probably going to be dealing with depression for the rest of my life, it would just really suck if I got a few years down the track and after all this struggling and finding everything difficult, just killing myself anyway. # 17: BPD- II

Positives and Negatives in Review Finally, in order to ascertain participants’ perceptions of the benefits and drawbacks of living with bipolar disorder, a hypothetical question was posed: If you had the choice, would you choose to ‘flick

Page | 226 the switch’ and turn off your bipolar? (Fry, 2006). This line of questioning was also helpful in determining the extent to which individuals felt they were coping.

In general terms, it is known that people do have the ability to emerge from negative life events with renewed meaning and the growth of many beneficial qualities, such as “…strengthened family, greater appreciation for life, increased life satisfaction, improved self-acceptance, renewed spirituality…” (Richmond et al., 2000: 1342). However, it is as yet unclear whether individuals with bipolar disorder are capable of permanently moving from a stage of crisis, to stabilisation, and positive outcome. In order to deepen understanding of how adaptive processes can be optimised, research into the subjective experience is essential.

Live with Bipolar Disorder Only four participants chose not to ‘flick the switch’, indicating they were happy to keep living with bipolar disorder. Factors influencing their decision were: feeling proud of overcoming adversity, experiencing personal growth as a result of difficult times and appreciating the personality traits and cognitive abilities that are associated with the illness. Their responses indicate that those who are able to integrate the illness into their life, and accept both the good and the bad, are key to building resilience;

I’ve had to dig deep and I’ve learnt so much on the way. I think, if things come to us easily, what’s the point of living? I’ve just learnt so much and I’ve gained so much by battling, and putting in the work. I’ve had something to strive for in a way. My wellness. Like, I really feel proud of myself that I came from such amazingly [bad place]. I was in that locked ward for a month! And I find that a really interesting story, and I like being part of an interesting story. And also I think it’s vital that you have certain, fundamental personality traits and that kind of thing, to be able to have this disorder. I would not give those up, for anything. I don’t know if my struggle in life, if I’d ever be able to accomplish anything as amazing as I have accomplished with my own recovery. Like, I’ve beaten the beast. I might have had an easy life and I wouldn’t have learnt as much, wouldn’t have built my muscles up, you know. I think it’s part of an interesting journey. # 2: BPD-I

No way in the world. I love the fact that I have what I have. I feel I’m very lucky. The insights that I have and the ability to be able to analyse life and the world in general are just - for me, there’s nothing like sitting down and going off on those tangents! I just love it. # 8: BPD-I

No, I wouldn’t turn it off, I wouldn’t say not to experience it, because the sort of person I am today is a reflection of what I was in the past. And there’s always hope, you know, no matter what the odds. I reckon the future has a lot to hold for me. # 19: BPD-I

Page | 227

I wouldn’t change anything in my life. Nothing’s that’s ever happened to me, really I wouldn’t. Because I am all my experiences and all my life, that’s what I am, that’s who I am, that’s what makes me who I am. The master plan is for a reason. # 21: BPD-II

Live without Bipolar Disorder However, the majority of participants (n = 12) unequivocally stated that would choose to ‘flick the switch’ and live without their bipolar disorder. Some of their responses are detailed below and indicate that it is the recurring depressions that can be too devastating to bear;

It’s gone on for so long, it’ s been 40 years that I’ve been like this, and it’s such a cruel illness. Yes, it’s so cruel. # 3: BPD-I

I’d flick a switch not to have it. It’s ruined my life. # 6: BPD-I

I definitely would not want to have it. It’s just too painful and devastating when it is happening. # 10: BPD-I

I have a hard time finding positives in bipolar! I would give it away in a flash if I could. # 9: BPD-I

Of course. I would always flick the switch. I just can’t imagine anything positive about it, so I’d definitely flick the switch. There’d be no positive aspects for me in my life anyway. # 4: BPD-II

Most definitely I wouldn’t have it! No way, no no way. I wouldn’t wish it on my worst enemy. I could quite happily grown through another adversity, not this one! It’s no fun! # 5: BPD-II

I’d flick a switch. I haven’t learnt to control it just yet. I don’t want it anymore. # 12: BPD-II

[Loudly into the tape] Absolutely choose not to have it. Did you get that? Definitely not. I haven’t written the great Australian novel, I haven’t done anything except create chaos and angst. It’s true! It’s just not fun. I don’t like it. I hate it, actually. It’s poo. It really is poo. # 14: BPD-II

For sure, I wouldn’t want it, no way. No. The pain is not worth it. You have other life experiences to teach you [things]. # 15: BPD-II

If I could choose to not have bipolar, I would most definitely say yes. I mean, unequivocally yes. I would not wish depression on my worst enemy. It ruins my quality of life in a way that no other person or circumstances can, because it’s in my head. And my very experience of living is punishing. The only reason I keep going is the hope that I’ll defeat this bane, this curse. Would I want to turn off the depression? Yes. Would I want to turn off everyone else’s depression? Yes. # 17: BPD-II

Yeah, I’d flick the switch. I’d rather just be whatever everyone else is – normal! [laughs] Whatever that is. Definitely. I wouldn’t wish it on anyone. I used to think I wouldn’t trade it for anything,

Page | 228

because I do love feeling my highs but the last low that I had just changed it all for me and I wouldn’t want to feel that way again.# 11: BPD-II

‘To Be Confirmed’ Four participants showed some ambivalence in answering this question; while they could acknowledge they might be in a better place following diagnosis, as it afforded a measure of stability and control, fear of what could unfold was still apparent and accounts for their hesitation;

I don’t know yet. I’m usually a positive person who puts a positive spin on things and works out, “Well, how can I make the best of this?” and I’m still working on that. I think there are stages that you go through. Bipolar’s a bit more of a WHACK! But I think good things will come out of it, in time. I get terrified as well, but I think it will be pretty good. I kind of saw the bipolar thing as being a watershed. Like doors opening and closing. Unless you close one door, you’ll never know what’s going to open, you kind of have to go, “Ok, let’s just shut-down and re-boot the computer and see what comes up.” And I’m still waiting to see what comes up. # 16: BPD-I

Well it is different! It’s not mundane. You’re up and down a bit, but if you can control it close to that line, it’s controllable, it’s not a burden. Do I get the opportunity to turn it back on? ‘Cause I don’t know. Of course you’d try it, but as it stands now, if something’s not broken, don’t try and fix it. That’s the way I’m lookin’ at it anyway. So I wouldn’t want to take the chance, you know, of goin’ somethin’ worse. I’m contented the way I am now, I can live with this, you know. Like, if the chaos is gone, you’ve got control. And what follows is a better life. Yeah, I’m in control, so I don’t want to change anything. # 18: BPD-II

I’ve been one of the lucky ones, I’ve come out the other end. I certainly wouldn’t flick a switch and get rid of it. As much as I’d like to, and go through life as a much more nicer, mellower person, I’ve still lived a lot of good and bad experiences through it, I’ve learnt from it... [But] if [my kids] had a future like me, I wouldn’t wish that upon anyone, you know. That’s a massive merry-go-round, of hurt and pain and hurtin’ people, and everything. # 13: BPD-II

Some Positives Participants were also questioned whether a life lived with bipolar disorder had taught any beneficial lessons or contributed to their lives in a positive way. It should be noted though, that these responses were drawn from explicit questioning, and thus not spontaneous remarks. The main values were in learning gratitude, the ability to live in the moment, to appreciate simpler goals and for gaining perspectives;

I think I’m more able to enjoy the very simple things, and there’s a great freedom in that, you don’t have to earn a certain amount of money. I’ve learnt to live like a tightrope walker and I think there’s

Page | 229

definitely something that’s there from having been through quite traumatic, extended difficult times. # 9: BPD-I

We’re not like all the others. We get to feel the good things, as well as the bad things, and that makes us appreciate life more, because we can appreciate life from all its facets, all its good points and bad points, wonderful things and tragic things. We feel tragedy and pain more deeply, we feel elation and happy things more, more deeply. And you know, that makes us a more open-minded type people. # 11: BPD-I

There may be a lot of value in staying at home and looking after my family and bringing up the dog and being happy and having things at a much slower pace. Maybe that’s a fantastic outcome that I could never have had if I didn’t have bipolar. Maybe it’s been the enabler for me to do really good things and have a really good quality of life. # 16: BPD-I

Greater awareness of small things, no I shouldn’t say small things - the important things. # 5: BPD-II

Well, in some ways, it’s not a blessing, but I think there’s some positives there. Just being able to look at the things that are important to me. And to learn to value things in my life. To be thankful for all that I do have, family and friends. # 7: BPD-II

Being aware of all the suffering of others, like I’ve started all my charity work since I’ve been making some life decisions about what’s important and what isn’t. Maybe it’s forced me to sit back and reflect about what’s important and what isn’t. And what I’ll let bother me and what I won’t let bother me. # 14: BPD-II

If I’m not depressed, there’s nothing really bad. Nothing’s really that bad. I would never want to have depression, but it has given me something, in that it’s given me that I don’t feel, ”I’ll be happy when...” - I feel happy now, if I’m not depressed. I can appreciate a good day, just ‘cause it’s sunny. It doesn’t have to be anything big. I think, “Well, if I’m not depressed, that’s as good as it gets.” # 15: BPD_II

I think I’ll find happiness, or contentment, in reconciling myself to a life of non-achievement, like most people have. And then just being happy, living life, having a partner, having a dog, having friends, travelling, reading books that sort of thing. # 17: BPD-II

Summary These findings highlight that in order to understand how people cope with bipolar disorder, it is vital to assess outcome in terms that are meaningful for the individual, not simply define in terms of absence of symptoms. While individuals may cognitively accept the reality of the illness, emotionally, and practically, it is often a different story. While some resiliency skills were evidenced by certain

Page | 230

individuals, such as stress reduction through lifestyle balance, changing perceptions and attitudes towards illness and recovery, as well as cultivating gratitude, it is clear that fundamental principles of bipolar disorder self-management, such as detection and intervention of early warning and triggers, were minimal in the majority of cases.

The main factors contributing to adaptation were identified as: recognising, and acting on, signs of impending episodes, reducing stress and mental stimulation, regulating social and circadian rhythms, maintaining lifestyle balance, revising expectations, seeking support, and exercise. The abilities to put the illness in perspective and deal practically with its consequences, without over-analysing its significance and meaning was also useful. These skills, however, appear to be dependent on temperament. Maintaining a positive outlook, through the cultivation of gratitude, and use of support networks, were also highlighted as helpful coping strategies.

Thematic analyses show that the coping repertoires detailed by the participants are not unique to bipolar disorder. Aside from developing prevention strategies through identification of early warning signs, most of the resiliency skills do not appear specific to bipolar disorder, but to strategies of chronic illness management.

In the main, participants with BPD-II did not see their episodes of hypomania as problematic, thus not requiring of management or intervention strategies. This situation shows that many individuals, despite diagnosis and treatment, do not recognise the pattern of their episodes, the interdependent nature of highs and lows, nor the importance of limiting ‘ups’ in order to reduce the impact of the ‘downs’.

The results to questioning whether participants would choose to keep bipolar disorder, or live without it, reveal the true extent of illness impact. Although some positives are conceded, most individuals would opt for a life without the wearying and unpredictable vacillations of energy, mood, impulses and behaviour.

Page | 231

PART SIX Reflecting Back, Looking Forward

This thesis turned the research spotlight on an area that has been neglected in the study of bipolar disorder. The importance of attending to psychosocial issues was highlighted in Part One as it was shown that there are significant gaps in both theoretical and practical knowledge on how individuals manage and cope with the long-term strains of the condition. Given the considerable burden the illness places on the individual, community and public health system, the condition demands consideration and investigation at least on par with other chronic illnesses. Qualitative analysis of the ‘lived experience’ is timely, relevant and essential. Thematic analysis revealed many shared themes common to the subjective experience of adaptation to a life managing bipolar disorder, so addressing thesis objectives.

Part Two revealed how difficult it was for individuals to identify the onset of symptoms and seek help early, emphasising the importance of identifying children at high genetic risk of developing bipolar disorder, and intervening early before episodes become too chaotic. Key findings of the phenomenological analysis into the characteristics of the highs and lows revealed that symptomatic episodes are primarily experienced through the body. A focus on the corporeality of the experience of bipolar disorder was so marked in these accounts that it gives rise to the idea that bipolar disorder is, first and foremost, a disorder of energy, rather than mood. Highs and lows are typically fuelled by an excess or depletion of energy states, and it is the somatic nature of these periods that appears to drive sensations leading to uncharacteristic behaviours and emotional dysregulation. These results indicate that many of the early warning signs (EWS) discussed in research and self-help literature, are not true EWS. For example, inability to sleep, agitation, altered perceptions, increase in confidence, even euphoria are possibly beginning symptoms of the illness. In comparison, a true EWS might be more corporeal signs of racing heartbeat, physical tremors, a ‘buzzing’ sense of excitement, increased appetite, inability to sit still and reflect.

These findings emphasise that more attention should be paid to the bodily experience of bipolar disorder, particularly how bipolar disorder impairs physical functioning to the extent it affects early development of core beliefs, ideas of ‘normality’ and identity. Also on this theme is the reality that, for most participants with bipolar disorder, the experience of highs was not particularly pleasant. While heightened energy, confidence, and positive feelings of wellbeing do occur, they are typically not sustained, and soon unravel into irritability, agitation, aggression and discomfort, unease and

Page | 232

distress. These findings suggest that emphasis in psycho-education literature and programs must reference these ‘black manias’, as inclusion may increase the likelihood of individuals identifying signs of illness in themselves earlier. In this section, reduction of anxiety was also shown to be particularly important in minimising vulnerability to relapse. It is also of significance that the substance of interview data focused on issues of grief, sustained loss and anxiety rather than issues related to dealing with diagnosis, symptomatology and medical treatment. Subjective focus thus reveals that the main elements of enduring concern for the individual are in resolving negative childhood experiences and learning to deal with the sense of failure related to disruption of life goals, lack of authentic identity and future-oriented anxiety. The association in these narratives with a troubling family environment, in particular participants’ strained relationship with their father, points to an area worthy of further investigation with regard to exploring the possible genesis of the disorder in those children with a genetic susceptibility. Further, the influence of parental regulation styles on children’s cognitive schemas and ability to self-regulate also emerge as an interesting avenue for research.

Part Three explored the impact of diagnosis and complex issues involved in subsequent medical treatment. Findings corroborate existing knowledge that there are significant problems with misdiagnosis and prescribed medication. Results show that, even when an individual appears stabilised and ‘travelling well’ with a medication regime, they can nonetheless be a long way from feeling in control of the illness and having a good quality of life. Evidently, improving early identification of bipolar disorder should be a fundamental goal of intervention that also requires improvement of clinicians’ expertise and more collaboration between health care professionals.

The process of integration is a separate process that typically occurs aside of the medical management of the illness. Findings highlight that greater attention should be paid to quality of life measures in the treatment of bipolar disorder. Influencing the determinants of health and wellbeing for people with bipolar disorder demand an inter-sectoral approach, as many of the influences of good mental health lie outside the medical system. Results suggest that optimal treatment of bipolar disorder requires a much more collaborative approach.

Those participants who received late diagnoses had more difficulty accepting the reality of the condition, as the longer symptoms are left to be synthesised into the individual sense of self, abilities and personality, the harder they are to untangle and recognise as manifestations of illness. Blows to self-development, and the risks of drug and alcohol addictions, are substantial the longer the illness goes untreated.

Page | 233

In terms of identity development, as predicted, bipolar disorder has a significant impact. On the positive side, diagnosis can bring relief and autobiographical clarification after years of instability, aggravation, angst and chaos. However, despite initial positives, in the long-term it is clear that individuals need more help integrating the manifestations and consequences of the illness into their lives and sense of selves. Results suggest that in order for people to reconcile the reality of bipolar disorder in their lives, counselling and sustained support at different stages in the evolution of the illness are needed. More education made available to the newly diagnosed, through intervention and prevention programs, will aid relapse prevention and divert pressure on the health system. In essence, programs should be implemented before, and not after, people have to pick up the pieces of their lives.

For those individuals with severe addiction abuse problems, a diagnosis of bipolar disorder represented a positive turning point in their lives towards the possibility of greater stability and control. However, it remains to be understood why ‘rock bottom’ – and the crippling disintegration this entails – must be reached before individuals seek help, or are adequately diagnosed. These findings corroborate the need for integrated services and a more collaborative approach amongst health professionals. Examination indicated that those individuals who developed comorbid addiction problems were initially drawn to drug and alcohol to suppress eruptions of energy and manage the disturbance of oscillating moods. Earlier diagnosis and treatment therefore also promises to allay some of the burden of this comorbidity.

Findings in this section also illustrated that optimal coping requires sustained behavioural changes and comprehensive identity work. Paramount to the development of positive coping repertoires is strengthening and reinforcing self-esteem, an often neglected focus of the medical paradigm. Individuals have substantial difficulties in reconciling the illness within the context of their lives and unique personalities. Helping individuals achieve a sense of authenticity within the confines of their illness should therefore be fundamental goal of therapy.

Part Four examined the ‘collateral damage’ that typically follows episodes of bipolar disorder. Analysis highlighted the substantial psychosocial distress that bipolar disorder imposes on people’s lives. Of significance is the dichotomous pull between internal drives, ambitions and capabilities and the requirements of healthy management. Findings show that these are difficult skills for individuals with bipolar disorder to master. Learning to balance spontaneity and goal striving, with the requirement to implement routines in order to maintain circadian rhythms, reduce pressure and over-stimulation, are key aspects of adjustment. Recognition of the benefit of lifestyle regularisation,

Page | 234

re-orientation of goals and managing boredom are revealed to be important skills in the successful management of the illness.

The impact of having to alter life goals and reduce pursuit of achievement should not be underestimated, as individuals can experience a troubling sense of grief and wounding as a result of these necessary restrictions and alterations. Support in negotiating these cost-benefit decisions and ensuring the bar is not set too low, would undoubtedly help in adjusting to the restrictions bipolar disorder inevitably brings.

Part Five – Moving Forward – explores people’s coping repertoires and shows that the path to adaptation and acceptance is one that is constantly re-negotiated at different stages in the illness cycle. Results highlight that the significant burden of bipolar disorder is unlikely to be reduced through treatment alone, and is thus beyond the sole capacity of psychiatry.

In terms of adaptation, investigative analysis indicates that it is a dynamic process that revolves around dynamic stages of refutation and denial; acceptance, ‘testing’ and re-affirmation; as well as periods of stagnation and re-negotiation. Most participants in this study were in a stage of marked languishing, where they were actively managing their symptoms and appeared to be coping, but certainly not thriving or leading a contented or fulfilled life (often ‘treading water’). This period of idling can lead to decline if it goes unchecked in the long-term, as it can negatively impact on self- esteem and lead to lowering of life expectancies and an undermining of a person’s innate sense of self-value and meaning.

Those individuals who coped well were shown to be able to move forward from the impact of diagnosis, find positives and strengths in adversity, adapt, learn lessons and change life goals. While these traits indicate resilience, they do not reveal coping repertoires unique to people with bipolar disorder. In general, they are the same strategies used in by people dealing with other chronic health conditions.

A priority of treatment should be on increasing the individual’s aptitude to lengthen periods of wellness between episodes of (hypo)mania and depression. Previous research has shown that, whilst bipolar disorder is a recurrent illness, in many cases, the rate and severity of relapse can be managed. The quality and availability of sustained, follow-up care is a key factor in optimising recovery. Psychosocial interventions that focus on teaching skills in identifying early warning signs, unique relapse signatures, as well as triggers to vulnerable times are of proven benefit.

A theme that emerges from the subjective accounts as a promising area of future research is the risk of developing shame. Those participants who experienced high levels of shame were those most

Page | 235

likely to cope poorly. Shame may be a significant factor in treatment resistant mood disorders. The development of models that identify those most likely to develop or internalise shame, like current research on vulnerability of certain personality styles in the genesis of depression, are likely to be of great utility.

There were no significant findings in relation to the difference between the two subtypes, except that participants with BPD-I were more likely to accept the need for medication and lifestyle management sooner that those with BPD-II. Understandably, the severity of manic episodes typically means that people with BPD-I often come into contact with the hospital and mental health system in a much more direct way than those with hypomania. This may predict they are more likely to adopt illness management strategies at an earlier stage, and thus possibly, are better able to separate aspects of the illness from self. In terms of BPD-II, analysis shows that the impact of the illness is as considerable as cases of BPD-I. Individuals with BPD-II experience significant angst and chaos in their lives due to delayed diagnosis and disruption of academic, relationship and life goals. The ambiguity over recognising hypomanic behaviour as a symptom is also a related factor that contributes to poorer recognition and illness acceptance.

Another promising area of further research is to take into account the impact of the pace of modernity in the development of wellbeing strategies. Findings have shown that the tempo and expectations of 21st Century postmodern society contain many elements that exacerbate the bipolar condition. These factors include diet and international travel, the excessive stimulation of ‘24-7’ society and accessible communication, the pressures of goal-directed hobbies, and a culture that rewards busyness, activity and partying as coping strategies.

In general, the broader socio-cultural environment does not support building-in moments of reflection or solitude, which may impact on peoples’ ability to maintain insight, with the result that individuals vulnerable to bipolar disorder are more likely to react to internal urges and impulses and be driven to the pursuit of desires. The ability to self-reflect is an important element of resilience, and it appears to be a skill lacking in many people with bipolar disorder. This reality suggest that the Eastern philosophies of mindfulness and equanimity may be of benefit in quelling the ego-centric drives and sensations of bipolar disorder, and a worthy field of further investigation.

Individuals with bipolar disorder make valuable contributions to society, and both communities and culture can greatly benefit from the charismatic leadership, generation of new ideas, sparkling company, contagious enthusiasm, creativity and humour they offer. This thesis highlights the urgency for attending to bipolar disorder as a priority health concern, to increase the success of

Page | 236 early intervention strategies and provide real opportunities for relapse prevention, management and most importantly, optimal coping.

Page | 237

Appendix

A. Diagnostic Criteria from the Diagnostic and Statistical Manual of

Mental Disorders IV (American Psychiatric Association, 1994)

Bipolar I Disorder - Diagnostic Features The essential feature of Bipolar I Disorder is a clinical course that is characterized by the occurrence of one or more Manic Episodes or Mixed Episodes. Often individuals have also had one or more Major Depressive Episodes. Episodes of Substance-Induced Mood Disorder (due to the direct effects of a medication, or other somatic treatments for depression, a drug of abuse, or toxin exposure) or of Mood Disorder Due to a General Medical Condition do not count toward a diagnosis of Bipolar I Disorder. In addition, the episodes are not better accounted for by Schizoaffective Disorder and are not superimposed on Schizophrenia, Schizophreniform Disorder, Delusional Disorder, or Psychotic Disorder Not Otherwise Specified. . . .

Bipolar II Disorder - Diagnostic Features The essential feature of Bipolar II Disorder is a clinical course that is characterized by the occurrence of one or more Major Depressive Episodes accompanied by at least one Hypomanic Episode. Hypomanic Episodes should not be confused with the several days of euthymia that may follow remission of a Major Depressive Episode. Episodes of Substance- Induced Mood Disorder (due to the direct effects of a medication, or other somatic treatments for depression, a drug of abuse, or toxin exposure) or of Mood Disorder Due to a General Medical Condition do not count toward a diagnosis of Bipolar I Disorder. In addition, the episodes are not better accounted for by Schizoaffective Disorder and are not superimposed on Schizophrenia, Schizophreniform Disorder, Delusional Disorder, or Psychotic Disorder Not Otherwise Specified. . . .

Criteria for Manic Episode A. A distinct period of abnormally and persistently elevated, expansive, or irritable mood, lasting at least 1 week (or any duration if hospitalization is necessary). B. During the period of mood disturbance, three (or more) of the following symptoms have persisted (four if the mood is only irritable) and have been present to a significant degree: 1. inflated self-esteem or grandiosity 2. decreased need for sleep (e.g., feels rested after only 3 hours of sleep) 3. more talkative than usual or pressure to keep talking

Page | 238

4. flight of ideas or subjective experience that thoughts are racing 5. distractibility (i.e., attention too easily drawn to unimportant or irrelevant external stimuli) 6. increase in goal-directed activity (either socially, at work or school, or sexually) or psychomotor agitation 7. excessive involvement in pleasurable activities that have a high potential for painful consequences (e.g., engaging in unrestrained buying sprees, sexual indiscretions, or foolish business investments) C. The symptoms do not meet criteria for a Mixed Episode. D. The mood disturbance is sufficiently severe to cause marked impairment in occupational functioning or in usual social activities or relationships with others, or to necessitate hospitalization to prevent harm to self or others, or there are psychotic features. E. The symptoms are not due to the direct physiological effects of a substance (e.g., a drug of abuse, a medication, or other treatments) or a general medical condition (e.g., hyperthyroidism). Note: Manic-like episodes that are clearly caused by somatic antidepressant treatment (e.g., medication, electroconvulsive therapy, light therapy) should not count toward a diagnosis of Bipolar I Disorder.

Criteria for Hypomanic Episode A. A distinct period of persistently elevated, expansive, or irritable mood, lasting throughout at least 4 days, that is clearly different from the usual nondepressed mood. B. During the period of mood disturbance, three (or more) of the following symptoms have persisted (four if the mood is only irritable) and have been present to a significant degree: 1. inflated self-esteem or grandiosity 2. decreased need for sleep (e.g., feels rested after only 3 hours of sleep) 3. more talkative than usual or pressure to keep talking 4. flight of ideas or subjective experience that thoughts are racing 5. distractibility (i.e., attention too easily drawn to unimportant or irrelevant external stimuli) 6. increase in goal-directed activity (either socially, at work or school, or sexually) or psychomotor agitation 7. excessive involvement in pleasurable activities that have a high potential for painful consequences (e.g., engaging in unrestrained buying sprees, sexual indiscretions, or foolish business investments) C. The episode is associated with an unequivocal change in functioning that is uncharacteristic of the person when not symptomatic. D. The disturbance in mood and the change in functioning are observable by others.

Page | 239

E. The episode is not severe enough to cause marked impairment in social or occupational functioning, or to necessitate hospitalization, and there are no psychotic features. F. The symptoms are not due to the direct physiological effects of a substance (e.g., a drug of abuse, a medication, or other treatment) or a general medical condition (e.g., hyperthyroidism). Note: Hypomanic-like episodes that are clearly caused by somatic antidepressant treatment (e.g., medication, electroconvulsive therapy, light therapy) should not count toward a diagnosis of Bipolar II Disorder.

Mixed Episode

A. The criteria are met for both a Manic Episode and for a Major Depressive Episode (except for duration) nearly every day during at least a one week period.

B. The mood disturbance is sufficiently severe to cause marked impairment in occupational functioning or in usual social activities or relationships with others, or to necessitate hospitalisation to prevent harm to self or others, or there are psychotic features.

C. The symptoms are not due to the direct physiological effects of a substance (e.g., a drug of abuse, a medication, or other treatment) or a general medical condition (e.g., hyperthyroidism).

Rapid Cycling

The DSM-IV defines rapid cycling bipolar disorder as a pattern of presentation accompanied by four or more mood episodes in a 12-month period, with a typical course of mania or hypomania, followed by depression or vice versa. The episodes must be demarcated by a full or partial remission lasting at least two months or by a switch to a mood state of opposite polarity (Mehta & Calabrese, 2005).

Page | 240

B. Concept of the Bipolar Disorder Continuum • Dunner et al. (1976) introduced the distinction between Bipolar-I (manic episodes) and Bipolar-II (hypomanic episodes).

• Klerman (1981) extended this nosology to include Bipolar-III (hypomania induced by drug therapy); Bipolar-IV (cyclothymic personality OR major depression sumperimposed on a hyperthymic temperament); Bipolar-V (depression with family history of BPD); and Bipolar- VI (mania without depression).

• Angst (1978) built on this by distinguishing between hypomania (m); cyclothymia (md); mania (M); mania with mild depression (Md); mania and major depression (MD); and major depression with hypomania (Dm).

• Akiskal (1983, 1996) introduced the concept of a ‘soft bipolar spectrum’;

• Akiskal & Pinto (1999) emphasised the inclusion of ‘intermediary forms’, such as Bipolar I1/2 (protracted hypomania); Bipolar-II1/2 (cyclothymic temperament + major depression); and Bipolar-III1/2 (major depression + stimulant abuse) (Marneros 2001; Angst & Marneros 2001)

• Bader & Dunner (2007: 866) suggest bipolar disorder could be defined in terms s a broad spectrum ranging in severity, with discrete subsets of BPD-I, BPD-II or BPD-NOS (not otherwise specified).

Page | 241

C. Interview Guide In order to allow participants maximum direction of the content and flow of their narratives, the researcher used an open-ended, unstructured format throughout the interview. There was minimum interruption, however the following prompt questions were asked when necessary to elicit more in- depth information:

• Can you tell me when you first became aware that something was not quite right? • What troubled you most at this time? • At this time, was anyone else in your life (family/friends/colleagues) concerned that something might be wrong? [If so, how did they let you know? Can you remember what your reaction was to this? Were you able to talk to anyone about your concerns?]

• What solutions, if any, did you try to alleviate your symptoms? [Were any of these effective? Did you feel in control of your emotions or behaviour?]

• Can you remember what made you first take steps to seek professional help for your symptoms? [When was this?]

• How was it that you came to be diagnosed with Bipolar Disorder? Can you describe for me what your reaction was to receiving the diagnosis? (Was it a shock/relief/something you never suspected? Had you heard of the illness before?)

• Can you tell me what you understand about Bipolar Disorder? (What sort of information, if any, were you given when you were first diagnosed?)

• In your opinion, do you believe Bipolar Disorder to be an illness that you will have to manage for life? (Do you consider it a chronic illness/disease/part of your personality/a one-off episode/stress induced?)

• Have you ever had to explain your symptoms/moods/behaviour to others? [How? In general, how do people react?]

• Can you describe for me what depression feels like for you? • Can you describe what the ‘highs’ are like for you? • Do you know of anyone else in your family who has Bipolar Disorder? [Have you been able to speak to them about it? Have they suggested anything helpful?]

• Can you tell me about the treatment you have received to date? [Has it been beneficial? In what way? If not, why not? ]

• What is your attitude to medications? • What do you find most helpful in managing the ‘lows’/ ‘highs’? What do you find least helpful?

• In your opinion, what has been the most difficult aspect of having Bipolar Disorder?

Page | 242

• Are there any aspects of this illness that you enjoy? [Can you explain what/why?] • Has it been difficult for you to resolve the memory of past episodes? [Do any past experiences continue to affect you today?]

• How ‘in control’ of your illness would you say you feel at the moment? • Do you fear relapse? • Is there anything else you would like to talk about today? • Do you believe Bipolar Disorder has ever significantly impinged on your ability to perform in social situations? Has it ever limited your work or social opportunities?

• Have you adopted any particular coping strategies since your diagnosis? • Have you chosen to disclose your illness to anyone in your life? [If so, in general, what has been their reaction? (family/partner/friends/colleagues) Did you notice any changes in the way you were accepted?] Did you care what others thought of you? Was their opinion important? Did it affect how you felt about yourself?]

• Can you tell me about the treatment you have received to date? Do you feel it has been beneficial? [If yes, in what way? If not, why not? ]

• What is your attitude to medications? • What have you found to be most helpful in managing the ‘lows’/ ‘highs’? What do you find least helpful?

• In your opinion, what has been the most difficult/positive aspects of having Bipolar Disorder?

• Is there any advice you would offer to someone who has been newly diagnosed? • How ‘in control’ of your illness do you feel at the moment? • Is there anything else you would like to discuss today?

Page | 243

D. Participant Questionnaire 1. Are you: □ Male or □ Female? 2. What is your date of birth? 3. Do you have a diagnosis of: □ Bipolar I? □ Bipolar II? 4. Are you: □ Employed? b) If YES, what is your current job? □ Unemployed? □ Other? (please specify role) 5. Have you ever been out of work due to your illness? □ Yes □ No If YES, for how long? 6. What is the highest level of education you have attained? □ Yr 10 Certificate □ Yr 12 Certificate □ Bachelor Degree □ Postgraduate Degree □ TAFE Diploma □ Apprenticeship (please specify) □ Other 7. a) Have you ever been hospitalised for a manic episode? □ Yes □ No b) If YES, how many times? 8. Was it a voluntary admission? □ Yes □ No □ Mix (If multiple admissions, please specify): 9. a) Have you ever been hospitalised for a depressive episode? □ Yes □ No b) If YES, how many times? 10. Was it a voluntary admission? □ Yes □ No □ Mix (If multiple admissions, please specify): 11. Which of the following, if any, have you consulted for help with your illness? □ GP □ Psychiatrist □ Psychologist □ Counsellor □ Social Worker □ Priest / Church leader / Spiritual advisor □ Natural Therapist □ Herbalist □ Acupuncturist □Reiki Practitioner □ Hypnotist □ Other (please specify)

12. How old were you when you were first diagnosed with Bipolar Disorder? 13. Were you diagnosed by a: □ GP? □ Psychiatrist? 14. a) Have you previously been diagnosed with depression? □ Yes □ No b) If YES, how old were you? 15. a) Are you currently taking medication? □ Yes □No b) If YES, are you taking: □ Antidepressants □ Mood stabilizers □ Both □ Other 16. Have you had electroconvulsive treatment (ECT)? □ Yes □ No 17. Which of the following, if any, have you found helpful in managing your episodes? (Tick multiple boxes if necessary) □ Medication □ ECT □ Keeping a daily mood diary

Page | 244

□ Omega-3 (fish oils) □ Yoga/Pilates/Meditation □ Exercise □ Sleep □ Healthy Diet □ No coffee/alcohol □ Massage □ Reading □ Attending a support group / talking to others with the illness □ Talking to family/friends □ Regular employment □ Maintaining a daily routine □ Hobbies (please specify) □ Other (please specify) 18. If you have any further comments, please add them here: Results (Data not referred in body of thesis): All nine BPD-I participants had been hospitalised multiple times for mania - two of these also for depression. Five BPD-II participants had been hospitalised for depression, only one had been hospitalised for mania. Four out of the nine BPD-I participants, and two out of the eleven BPD-II participants, had been scheduled. Six BPD-I, and six BPD-II, participants had been out of work as a result of illness (an average of 12.8 and 10.6 months respectively). One person with BPD-I, and one person with BPD-II, had received ECT.

Hypnotist Spiritual Advisor Natural Therapist Counsellor Psychologist BPD-I (n=8) GP BPD-II (n=9) Psychiatrist

0 5 10 15 20 Health Care Professionals Consulted (n = 18)

Page | 245

E. Participant Information Statement and Consent Form

THE UNIVERSITY OF NEW SOUTH WALES and BLACK DOG INSTITUTE Exploring Identity & Subjective Health Beliefs in Bipolar Disorder

Approval No: HREC 07029

This study is being undertaken by a research student at the Black Dog Institute in association with the University of New South Wales. In order for you to participate, we need to obtain your informed consent. This can be done by reading the study information below and signing the appropriate forms.

Purpose of study

You are invited to participate in a study examining the effect of bipolar disorder on peoples’ lives. We hope to understand the meaning individuals bring to their diagnosis and learn how they manage their illness.

• You were selected as a possible participant in this study because you have been newly diagnosed with bipolar disorder, or had a diagnosis of bipolar disorder confirmed by a psychiatrist at the Black Dog Institute, [or]; • You were selected as a possible participant in this study because you have been diagnosed with Bipolar-I or Bipolar-II Disorder diagnosis and are currently receiving clinical care, [or]; • You were selected as a possible participant in this study because you entered an essay about your experiences of bipolar disorder in the recent Black Dog Institute Writing Competition ‘Getting of Wisdom’.

Description of study

If you decide to participate, you will be invited to attend an in-depth interview at a time of your convenience at the Black Dog Institute. To begin, you will be asked to fill out a short questionnaire that will take approximately ten minutes. You will then participate in an open-ended interview that will be recorded and last approximately one hour. The interview will later be transcribed and analysed by the researcher.

You may be contacted again by the researcher six months later to arrange a follow-up interview. This too will be recorded and last approximately one hour. Audio tapes of both interviews will remain confidential and will not be linked to your name.

Risks and benefits

Some people find that participating in one-on-one interviews and being able to tell their story is helpful to them, although we cannot, and do not guarantee or promise that you will receive any benefits from this study. You may experience some distress at recalling past events associated with your diagnosis of bipolar disorder. Should you become distressed, a de-briefing session with a trained counsellor at the Black Dog Institute will be organised and you will also be offered use of the telephones in the Community Resource Centre to contact Lifeline.

Page | 246

Voluntary participation

Taking part in this study is entirely voluntary. Your decision whether or not to participate will not make any difference to the medical care you receive or prejudice your future relations with the University of New South Wales or the Black Dog Institute. If you decide to participate, you are free to withdraw your consent and discontinue participation at any time, without prejudice. If you wish to stop your involvement in the study, you can do so by sending an email directly to the researcher: [email protected]. Alternatively, you can complete and mail the ‘Withdrawal of Consent’ section of the form below.

Confidentiality and disclosure of information

Any information obtained in connection with this study that can be identified with you will remain confidential and will only be disclosed with your written permission or except as required by law. In any publication, information will be provided in such a way that you cannot be identified. If you give us your permission by signing this document, the results of the study may be published in peer-review research journals or discussed at scientific forums and conferences in such a way that you cannot be identified.

Feedback to participants

A de-identified summary of the overall research findings will be emailed to research participants at the end of the study.

Questions or complaints

If you have any questions about the study, please feel free to contact Tessa Wigney: [email protected] or telephone 02 9382 2998. You may also discuss your questions with the Project Supervisor Professor Gordon Parker: [email protected] or telephone 02 9382 4372.

Complaints may be directed to the Ethics Secretariat, The University of New South Wales, Sydney 2052 Australia (Phone: 9385 4234 Fax: 9385 6648 Email: [email protected]). Any complaint you make will be investigated promptly and you will be informed out the outcome.

Your consent

Your decision whether or not to participate will not prejudice your future relations with the University of New South Wales and the Black Dog Institute. If you decide to participate, you are free to withdraw your consent and to discontinue participation at any time without prejudice.

If you have any questions, please feel free to ask. Tessa Wigney (contact details above) will be happy to answer them. You will be given a copy of this form to keep.

Page | 247

CONSENT

Exploring Identity & Subjective Health Beliefs in Bipolar Disorder

You are making a decision whether or not to participate. Your signature indicates that, having read the information provided above, you have decided to participate.

…………………………………………………… .…………………………………………………….

Signature of Research Participant Signature of Witness

…………………………………………………… .…………………………………………………….

(Please PRINT name) (Please PRINT name)

…………………………………………………… .…………………………………………………….

Date Nature of Witness

REVOCATION OF CONSENT

Exploring Identity & Subjective Health Beliefs in Bipolar Disorder

I hereby wish to WITHDRAW my consent to participate in the research proposal described above and understand that such withdrawal WILL NOT jeopardise any treatment or my relationship with The University of New South Wales and the Black Dog Institute.

…………………………………………………… .…………………………………………………….

Signature Date

……………………………………………………

Please PRINT Name

The section for Revocation of Consent should be forwarded to: Tessa Wigney c/- Black Dog Institute, Hospital Road, Prince of Wales Hospital, Randwick NSW 2031.

Page | 248

F. Invitation Letter to Writing Competition Entrants

June 2007

Dear [Name]

RE: ‘The Getting of Wisdom’ – 2007 Black Dog Institute Writing Competition

You recently entered an essay about your experiences of bipolar disorder in the above competition, sharing advice on how to live with the illness and manage the ‘highs’. We received a total of one hundred and ninety-two stories, rich in insights, that we are keen to explore more deeply in order to better understand this complex illness.

My name is Tessa Wigney and I am a researcher at the Black Dog Institute / UNSW School of Psychiatry. I am currently seeking participants for a PhD project exploring identity and subjective health beliefs in bipolar disorder and am keen to hear more of your unique story.

If you have been diagnosed by a GP or a psychiatrist with either Bipolar-I or Bipolar-II Disorder and would be interested in participating in a one-on-one interview at the Black Dog Institute premises in Randwick, at a time of your convenience, you can contact me directly to find out more. (However, I will be unavailable during August as I will be overseas).

Name: Tessa Wigney

Email: [email protected]

Phone: 9382 2998

I look forward to hearing from you if you are interested in being further involved in sharing your experiences.

Yours sincerely

Tessa Wigney

Black Dog Institute / UNSW School of Psychiatry

Page | 249

G. Awareness of Early Symptoms

Bipolar-I Subjects Participant Age Earliest memory of symptoms

# 2 (Female) 5 years Well, I felt symptoms from when I was a tiny thing, like 4 or 5. My earliest memories. But I didn’t know them as symptoms, I just knew them as the world sucks. Like I felt bad. They just escalated very slowly. At 13 I’d be screaming, at 14 I’d be screaming louder, 15 I’d be screaming and kicking a wall, 16 I’d be kicking, screaming and putting holes in a wall, you know. It was like that. Constantly.

# 3 (Female) 25 years It was when I had my first child, I got postnatal depression. Nobody knew what was wrong with me, I was just regarded as an ungrateful mother, that I had a beautiful baby and a marvellous husband and why wasn’t I happy?

# 6 (Female) 16 years Oh, sleeplessness, irritability, getting up at all hours of the morning, I cleaned out Mum’s spice cupboard at 4 am.

# 8 (Female) 21 years I started getting less and less sleep. I was just interested in having a good time which, on reflection was probably the illness starting then. I started doing things there’s no way I’d normally do in front of my parents, like I’d go down the backyard and have a cigarette and I’d smoke like a demon and I heard these songs which would just trigger things in my mind, and I’d just go over and over, I must have listened to those songs a million times over. They had a property in the country, so we went to the country, and the final straw was I woke up at 5 o’clock one morning, after I’d had like 3 hours sleep, and the kook from the kookaburras - I believed that kookaburras were guiding me. And then I went on this rampage round the country. I let cows out and horses out and just believed all these things, like totally irrational, in my mind. That you know, the horse wanted to come with me and the cow wanted to come with me, so I let them all out. And I was obsessed with sunglasses too, for some reason.

# 9 (Female) 27 years As soon as mania starts, it’s a really altered state. Things, the world, is

Page | 250

buzzing around a bit faster and the wheels start to come off. So a couple of weeks of that, then I start feeling a bit spacey. Still spinning a bit, humming along. I was really jumpy and my eyes were heavy. Probably would have looked like I was on drugs, or something. [But] because my first episode escalated into psychosis, I don’t really think I understood I had something wrong until I was coming out of it.

# 10 (Male) 45 years You mean, sort of, when your mind changed direction? Well I remember the first thing, that I had a bit of an inkling that something was wrong, I had no idea what - I was getting tired and I could tell I was tired, so I’d go for a run after [work] because I could feel the stress, the manic energy building up. So I started getting quite wound up, I suppose is the phrase. There was a lot of anger as well, mixed in. I was completely and utterly exhausted. It was almost like my brain had gone ‘drjjjjj’. My brain was just so over-run that it was just this massive feeling of fatigue.

# 11 (Female) 16 years Never! [laughs]. I didn’t sleep well. I just thought that was me. You know, everything that happens to you, you just think that’s part of your make-up, your nature. I was a little bit depressed at the end of Yr 10 at school because I didn’t get into the job that I wanted to. So there was a few weeks there where I was a bit depressed, but certainly not suicidal or anything like that, just down in the dumps.

# 16 (Female) 15 years I felt myself to go through a patch where I was very strange. I felt myself detached from people and I felt very awkward. Never looked at people and I just felt a bit... I felt weird. Isolated a little bit, I don’t know, I just felt weird. Couldn’t make eye contact with people. I thought, this is odd. I feel odd. I didn’t know it was depression, because I didn’t sit in my room and cry. It was depression because I became totally detached from everyone and everything, I was emotionally dead. I had no emotions, no happiness, sadness, joy, nothing.

# 19 (Female) 16 years My Mum said to my Nanna, “There’s something dangerously wrong with her. She needs to see a psychiatrist!” And so they made me an

Page | 251

appointment to see the family GP. And he said, “You’re a paranoid schizophrenic”. And I thought, “Oh my god!” And it was all because my

Mum had rung up and said that I don’t act normal. What sort of behaviour was your mother worried about? Well. When I used to lose my temper, I used to go into my bedroom, and swear. I used to go to my room and hurl my pillow around my room. Until I got it out of my system.

Bipolar-II Subjects Participant Age Earliest memory of symptoms

# 4 (Male) 25 years I didn’t really; I just know I was unwell for about nine months before I was actually diagnosed.

# 5 (Female) 35 years When it really hit, it was about eight months [after the birth]. I’d struggled looking after her. Feeling exhausted, I won’t even say most of the time, it was all of the time, and it didn’t matter what I did, whether I slept… But there were times when she would be crying, I was yelling at her, just not being able to tolerate her noise, and not able to tolerate her not going to sleep.

# 7 (Female) 15 years In hindsight, I think I suffered from depression since I was a teenager. There were times when I did feel down. I can remember saying to

someone that I felt depressed. Just low I think, and lack of self-esteem. Not being able to manage, withdrawing, and sleeping too much. I did feel depressed. I felt, I had to stop, and I couldn’t go on

# 12 (Female) 7 years I was a very sad child. I can just remember all the sad things about being a child... I was a bit obsessive. Well, not a bit, extreme obsessive. Extreme obsessive. And always sad to leave Mum to go to school and I’d cry...I was very serious. Always had the world on my shoulders.

# 13 (Male) 15 years From a fairly early age, I just reacted to things differently. I was sort of very emotional, I was always on a high, I was always bouncing around as a kid, and then just lying down, flatten out and stuff. When I look

Page | 252

back at it now, I’ve sort of always been sort of up and down. Very sort of, outspoken and things like that. So, I think, that was from very early on, I sort of started havin’ very big highs and lows and things.

# 14 (Female) 19 years I think my first proper episode of depression, I didn’t recognise as a depression because my brother’s best friend died, so I just kind of focused everything on this thing and thought that that was so sad... It just seemed so sad to me, so I think I just didn’t realise at the time that I was actually suffering depression and those things were seeming to be much worse for me because of it. You just try to rationalise – why am I feeling this way, it must be this or that.

# 15 (Female) 15 years I was just flat as anything. I couldn’t talk and I remember where I was sitting, and my friend said, “What’s wrong?” and I said “I don’t know” and she said “Well, snap out of it”. And I’ve always remembered that, but at the time I had no idea what that was.

# 17 (Male) 16 years It took years of being unhappy before I sought counselling, on my parents’ advice. My mother distinctly recalls that depression-like symptoms first started to appear when I was about 16. Do you remember that? Yes. I had a few issues in High School, health and otherwise. But they really didn’t start to affect you know, who I was and my outlook on life in a crippling sense, until about that age. I never suspected depression or things like that. In retrospect, it was depression, but I just wasn’t aware at the time.

# 18 (Male) 7 years I reckon, the first time I can remember I was about seven. I can really, it was just clear to me, it was more of a sadness, you know. Or a loneliness? And would it just pass? Yeah, it would, you’d come out of it, sort of, float out of it. I can put my finger on it cause I’d get by myself, you know, I wouldn’t mix and all that. I was always the one runnin’ around everywhere – not the black sheep, but didn’t fit the mould like the rest of them [the family]. I didn’t feel different, but when I look back I can see the way I was behaving was different to the rest of them. I was always the one gettin’ into trouble a lot of the time.

Page | 253

# 20 (Male) 16 years Well, I didn’t have a very good time in High School. Socialising issues and high natural intelligence, which doesn’t sit well with rote learning, so I didn’t fit in very well. I started skipping school. The first time I was ever taken to a psychiatrist, I was sent there by school because I was skipping school. And he was nice and well-meaning but it was just a sense of alienation that I felt more than anything else. Nothing really made any sense, nothing. You know when you’re that age (16), you’re told one thing and then the grown-ups act a different way so that sets up this basic level of dissonance in your head. I was a terror at home. To me it was just one, despairing blur of hell, basically. I really didn’t like that time, I don’t have any happy memories from my childhood really.

# 21 (Male) 7 years As a child, they told me I was hyperactive. Always as a child I felt irritable. Discontented, restless. My earliest memories were of just not being connected with everyone else. Watching kids do things that I thought I had to learn to do, that they seemed to be doing naturally. It was like my skin was too tight for me. I was always uncomfortable, that’s probably the best way I could describe it. Restless. Uncomfortable and restless. But when you asked me when I first known, my own personal opinion is that I was born with this, the highs of high and the lows of low. No balance in life.

Page | 254

H. Advice to Newly Diagnosed Participants were asked for the advice they would give someone newly diagnosed with bipolar disorder, and the suggestions are presented below. The most consistent recommendation relates to the benefits of medication;

Don’t do anything just yet, except learn about yourself and the disease. Don’t try and change your behaviour, apart from taking your medication and that kind of thing. Just focus on learning about yourself and how the disorder works inside your body, cause you won’t be able to manage it until you know exactly how it works. # 2: BPD-I

First of all I’d say, I feel for you. Secondly I’d say, don’t give up hope. Thirdly I’d say, enjoy the highs. Fourthly, I think I’d say, realize how lucky you are that you have highs, because [some] patients just have depression, and that’s all. At least with bipolar, you can come up for air and you do have times when you’re really happy and things seem to be going really well. I think that’s about it. # 3: BPD-I

Well, to read a lot about it. And if they can’t read about it, ask someone that’s got it. Or go on the internet. # 6: BPD-I

Take your medication. Just do it. Because if you don’t, it just leads to such a rollercoaster path. About the disease, you’ve got to learn. I subscribe to the SANE newsletter. You really need someone else, a friend, or someone you trust. For me, mood diaries are nothing now, but if you’re first diagnosed with bipolar, I would definitely write down your feelings, so that a psychiatrist can get a picture, cause if your Doctor doesn’t get a clear picture of what’s going on in your head, they can’t diagnose you properly in the first place. Write down your feelings to discuss with your Doctor, until you’ve got it yourself, until you understand your own mind. And that’s a real key too, if you understand your own mind, it’s a great help. You’ve got to learn how to manage your own thoughts. # 8: BPD-I

Be patient with the medication - by far and away that’s been the biggest answer to my problems. I think that everyone is quite individual going into this so you need to, over time, find your own way. And that means being prepared to question things with your Doctor, or other health professionals. I think in terms of friendships, I think friends need to be told what you need. So if you don’t have the ability at the moment, maybe a friend or a parent could play that role, letting other people know what you need. What else? I would say that suicidal thinking is a symptom that should be noticed and reported to your Doctor, not sat on privately and thought that it’s your own style of thinking, cause it really does come with the illness. # 9: BPD-I

Don’t despair, you can get help and with time you will feel better. There is no easy answer though and your life will change. If you look at it in a positive way it’s all about maintaining a healthy balanced lifestyle and if you were suffering too much stress or just living too hard, bipolar is a bit of a wake-up call to change your lifestyle and find out what really is important. We are all sort of trapped in a crazy

Page | 255 rat race and even the lead rats are still rats. I’d also advise people to chat to other bipolar sufferers and indeed read. # 10: BPD-I

Of all my 10 years of experience, all my readings. Don’t sweat it. Accept it. See what works for you. Get the best help you can. Educate yourself. And don’t be embarrassed. Be proud. Bipolar and proud. I’ve never been embarrassed. I’ve always thought, “Well, I’m not like all the others, am I?” I’m one of 10% of the population that has bipolar, least we’re original, you know? # 11: BPD-I

To put it in a nutshell, do as your psychiatrist says, until you’re cured, until you have no mental illness. Seek help when the early signs are beginning to rear their heads. And seek your friends and your family’s cooperation and love. People [need to be] educated to get out of the situation before it devours them, [and understand that] there’s the black dog biting you. So go to a Doctor, tell him you’re not feeling well, tell him what you’re experiencing and tell him how long it’s been going for and say to him, “I don’t want to get sicker, I want to get better.” # 19: BPD-I

Just that, as I understand, there’s not a cure, there’s some drugs that can work extremely well that can help you, amongst other things around lifestyle and so on, to live a happy, fulfilled, worthwhile life. But if you’re being told that the best course of action is to take a particular type of medication and stay on it for a long time, I’d say do it, because the ramifications of not doing it are just not worthwhile thinking about. And even if they’re not dramatic life-threatening things, they can be significant none-the-less, life-changing sort of career things, issues around relationships and so on, you know, that massive pressure on the people around you, so a it’s a small price to pay to be taking medication because it does work. # 4: BPD-II

Find your best psychiatrist you can possibly find. You need a diagnosis. An accurate diagnosis. That is the most important thing. Just don’t muck around with anyone. Find out who the best person is in your area, and go. Because it’s just not worth stuffing around years and years of your life! # 5: BPD-II

I’d say that there’s a lot of help there for them, and that it passes. That it’s not a permanent state. Yeah, there’s a lot of support. That you’re ok. # 7: BPD-II

No amount of regret, wishing that you didn’t have the disorder or denial is going to change a thing. Accept it. Use it as an obstacle and crash right through the middle of it. Forget the past. Deal with the future by dealing with the condition and always remember that you have bipolar disorder, you are not bipolar disorder. And it’s something that can be controlled through medication and through your own mental strength. # 12: BPD-II

Don’t self-medicate. And to read as much and inform yourself as much as you can, so that you can play a real role in the decisions that you make, about the way you manage your illness. # 14: BPD-II

I’ve often thought about the advice I’d give to someone who was just learning about their depression and I’ve often thought about what I would say, but honestly, I’m not qualified to give advice if I

Page | 256 haven’t figured out how to be happy myself. I could say all the common sense things like, get some rewarding hobbies, don’t spend too much time alone, exercise, eat well, sleep well, be good to your friends and family, do some volunteer work, all those things that are food for the soul. But I try to do them, I don’t always succeed but sometimes I do, and I’m still unhappy so, who am I to give advice? So I would be loathe to give advice until I get my act together and I don’t know how I’m going to do that. I’ve got ideas, but I don’t know if any of it will work. And it would be inappropriate for me to advise anyone I think. # 17: BPD-II

Page | 257

References

ACCESS ECONOMICS: SANE Australia (2003) Bipolar disorder: Costs: An analysis of the burden of bipolar disorder and related suicide in Australia, Melbourne. AGREN, H. & BACKLUND, L. (2007) Bipolar disorder: Balancing mood states early in course of illness effects long-term prognosis. Physiology & Behaviour, 92 (1-2), 199-202. AKISKAL, H. (1996) The Prevalent Clinical Spectrum of Bipolar Disorders: Beyond DSM-IV. Psychopharmacology, 16 (2), 10. ALDWIN, C. (1994) Stress, coping, and development. New York, Guilford Press. ALEXANDER, F. & SELESNICK, S. (1967) The History of Psychiatry: an evaluation of psychiatric thought and practice from prehistoric times to the present London, George Allen and Unwin Ltd. ALIVERTI, M. (2004) The light of faith in the world of depression: the history of depression. Dolentium Hominum, 55. AMERICAN PSYCHIATRIC ASSOCIATION (1994) Diagnostic and Statistical Manual of Mental Disorders: 4th Edition, Washington, American Psychiatric Association. ANDERSON DARLING, C., OLMSTEAD, S., LUND, V. & FAIRCLOUGH, J. (2008) Bipolar Disorder: Medication Adherence and Life Contentment Archives of Psychiatric Nursing, 22 (3), 113- 126. ANDRESEN, R., OADES, L. & CAPUTI, P. (2003) The experience of recovery from schizophrenia: towards an empirically validated stage model. Australian and New Zealand Journal of Psychiatry, 37 (5), 586-594. ANGST, J. (1978) The course of affective disorders. European Archives of Psychiatry and Clinical Neuroscience, 226 (1), 65-73. ANGST, J. (1998) The emerging epidemiology of hypomania and bipolar II disorder. Journal of Affective Disorders, 50 (2-3), 143-151. ANGST, J. & MARNEROS, A. (2001) Bipolarity from ancient to modern times:: conception, birth and rebirth. Journal of Affective Disorders, 67 (1-3), 3-19. ANGST, J. & SELLARO, R. (2000) Historical perspectives and natural history of bipolar disorder. Biological Psychiatry, 48 (6), 445-457. ANOLLI, L. & PASCUCCI, P. (2005) Guilt and guilt-proneness, shame and shame-proneness in Indian and Italian young adults. Personality and Individual Differences, 39 (4), 763-773. ANONYMOUS (2005) Jane Pauley finds new strength in the struggle against bipolar disease. New York Times Magazine. Academic Research Library. ANONYMOUS (2006) Darkness is my only companion: a Christian response to mental illness. Publishers Weekly, 253 (3), 58-59. ARNOLD, L., WITZEMAN, K., SWANK, M., MCELROY, S. & KECK JR, P. (2000) Health-related quality of life using the SF-36 in patients with bipolar disorder compared with patients with chronic back pain and the general population. Journal of Affective Disorders, 57 (1-3), 235-239. ASBRING, P. (2001) Chronic illness - a disruption in life: identity-transformation among women with chronic fatigue syndrome and fibromyalgia. Journal of Advanced Nursing, 34 (3), 312-319. ATSMA, A. (2008) The Theo Project: Greek Mythology,http://www.theoi.com/Daimon/Maniai.html, Accessed 14/04/2009. AYRES, L., KAVANAUGH, K. & KNAFL, K. A. (2003) Within-case and across-case approaches to qualitative data analysis. Qualitative Health Research, 13 (6), 871-883. BADER, C. & DUNNER, D. (2007) Bipolar disorder not otherwise specified in relation to the bipolar spectrum. Bipolar Disorders, 9 (8), 860-867.

Page | 258

BAKER, J. (2001) Bipolar disorders: an overview of current literature. Journal of Psychiatric & Mental Health Nursing, 8 (5), 437-441. BALDESSARINI, R. (2000) A plea for integrity of the bipolar disorder concept. Bipolar Disorders, 2 (1), 3-7. BALL, J., MITCHELL, P., MALHI, G., SKILLECORN, A. & SMITH, M. (2003) Schema-focused cognitive therapy for bipolar disorder: reducing vulnerability to relapse through attitudinal change. Australian and New Zealand Journal of Psychiatry, 37 (1), 41-48. BARHAM, P. & HAYWARD, R. (1998) In sickness and in health: dilemmas of the person with severe mental illness. Psychiatry-Interpersonal and Biological Processes, 61 (2), 163-170. BEAUCHEMIN, K. & HAYS, P. (1995) Prevailing Mood, Mood Changes and Dreams in Bipolar Disorder. Journal of Affective Disorders, 35 (1-2), 41-49. BECK, C. (2002) Postpartum Depression: A Metasynthesis. Qual Health Res, 12 (4), 453-472. BELARDINELLI, C., HATCH, J., OLVERA, R., FONSECA, M., CAETANO, S., NICOLETTI, M., PLISZKA, S. & SOARES, J. (2008) Family environment patterns in families with bipolar children. Journal of Affective Disorders, 107 (1-3), 299-305. BELLIVIER, F., GOLMARD, J.-L., RIETSCHEL, M., SCHULZE, T., MALAFOSSE, A. & PREISIG, M. (2003) Age of onset in bipolar I affective disorder: further evidence for three subgroups. Am J Psychiatry, 160, 999-1001. BELMAKER, R. & VAN PRAAG, H. M. (Eds.) (1980) Mania: an evolving concept Lancaster, MTP Press. BENDELOW, G. (1993) Pain Perceptions, Emotions and Gender. Sociology of Health & Illness, 15 (3), 273-294. BENDELOW, G. & WILLIAMS, S. (1995) Transcending the Dualisms - Towards a Sociology of Pain. Sociology of Health & Illness, 17 (2), 139-165. BERK, M., BERK, L. & CASTLE, D. (2004) A collaborative approach to the treatment alliance in bipolar disorder. Bipolar Disorders, 6 (6), 504-518. BERK, M., BERK, L., MOSS, K., DODD, S. & MALHI, G. (2006) Diagnosing bipolar disorder: how can we do it better? MJA, Vol. 184(9), 459-462. BERK, L., BERK, M., CASTLE, D. & LAUDER, S. (2008) Living with Bipolar: A guide to understanding and managing the disorder. Sydney, Allen & Unwin. BERRETTINI, W. (2000) Are schizophrenic and bipolar disorders related? A review of family and molecular studies. Biological Psychiatry, 48 (6), 531-538. BERRIOS, G. E. (2004) Of mania: Introduction. History of Psychiatry, 15 (57), 105-124. BHUGRA, D. & FLICK, G. R. (2005) Pathways to care for patients with bipolar disorder. Bipolar Disorders, 7 (3), 236-245. BHUI, K. & BHUGRA, D. (2002) Explanatory models for mental distress: implications for clinical practice and research. British Journal of Psychiatry, 181, 6-7. BIDDLE, L., DONOVAN, J., SHARP, D. & GUNNELL, D. (2007) Explaining non-help-seeking amongst young adults with mental distress: a dynamic interpretive model of illness behaviour. Sociology of Health & Illness, 29 (7), 983-1002. BLACK DOG INSTITUTE (2009) http://www.blackdoginstitute.org.au, Accessed 12/01/2009. BLAIRY, S., LINOTTE, S., SOUERY, D., PAPADIMITRIOU, G. N., DIKEOS, D., LERER, B., KANEVA, R., MILANOVA, V., SERRETTI, A., MACCIARDI, F. & MENDLEWICZ, J. (2004) Social adjustment and self-esteem of bipolar patients: a multicentric study. Journal of Affective Disorders, 79 (1-3), 97-103. BLASHFIELD, R. K. (1998) Diagnostic models and systems IN BELLACK, A., HERSON, M. & REYNOLDS, C. R. (Eds.) Clinical Psychology: Assessment. New York, Elsevier Science. BLEEKER, H. & MULDERIJ, K. (1992) The experience of motor disability Phenomenology and Pedagogy. BOLLINI, P., TIBALDI, G., TESTA, C. & MUNIZZA, C. (2004) Understanding treatment adherence in affective disorders: a qualitative study. Journal of Psychiatric & Mental Health Nursing, 11 (6), 668-674.

Page | 259

BOWDEN, C. (1997) Update on Bipolar Disorder: Epidemiology, Etiology, Diagnosis, and Prognosis Medscape Psychiatry & Mental Health eJournal 2(3). BOWER, B. (2000) Pushing the Mood Swings.(causes and treatments of manic depression). Science News, 157 (15), 232. BOWSKILL, R., CLATWORTHY, J., PARHAM, R., RANK, T. & HORNE, R. (2007) Patients' perceptions of information received about medication prescribed for bipolar disorder: Implications for informed choice. Journal of Affective Disorders, 100 (1-3), 253-257. BRADBURY, H. & REASON, P. (2006) Broadening the bandwidth of validity: issues and choice-points for improving the quality of action research. IN REASON, P., BRADBURY, H. (Ed.) Handbook of Action Research. London, Sage. BRÜNE, M. & BRÜNE-COHRS, U. (2006) Theory of mind--evolution, ontogeny, brain mechanisms and psychopathology. Neuroscience & Biobehavioural Reviews, 30 (4), 437-455. BULLINGTON, J., NORDEMAR, R., NORDEMAR, K. & SJOSTROM-FLANAGAN, C. (2003) Meaning out of chaos: a way to understand chronic pain. Scandinavian Journal of Caring Sciences, 17 (4), 325-331. BURKERT, W. (1985) Greek religion : archaic and classical Oxford, Blackwell. BURY, M. (1982) Chronic illness as biographical disruption. Sociology of Health & Illness, 4 (2), 167- 182. BUSFIELD, J. (2000) Introduction: Rethinking the sociology of mental health. Sociology of Health & Illness, 22 (5), 543-558. CADE, J. F. J. (1949) Lithium Salts in the Treatment of Psychotic Excitement. Medical Journal of Australia, 2 (10), 349-352. CAMPBELL, P. (2006) Changing the mental health system - a survivor's view. Journal of Psychiatric and Mental Health Nursing, 13 (5), 578-580. CANNON, S. (1989) Social-Research in Stressful Settings - Difficulties for the Sociologist Studying the Treatment of Breast-Cancer. Sociology of Health & Illness, 11 (1), 62-77. CARDER, P. C., VUCKOVIC, N. & GREEN, C. A. (2003) Negotiating medications: patient perceptions of long-term medication use. Journal of Clinical Pharmacy and Therapeutics, 28 (5), 409-417. CARESS, A. L., LUKER, K. A. & OWENS, R. G. (2001) A descriptive study of meaning of illness in chronic renal disease. Journal of Advanced Nursing, 33 (6), 716-727. CARLSON, G., FINCH, S., FOCHTMANN, L., YE, Q., WANG, Q., NAZ, B. & BROMET, E. (2007) Antidepressant-associated switches from depression to mania in severe bipolar disorder. Bipolar Disorders, 9 (8), 851-859. CARROLL, J. (1998) Ego and Soul: The Modern West in Search of Meaning, Pymble, Harper Collins. CARTER, K. & DELAMONT, S. (Eds.) (1996) Qualitative Research: The Emotional Dimension, U.S.A, Athenaeum Press Ltd. CASEY, B. & LONG, A. (2002) Reconciling voices. Journal of Psychiatric & Mental Health Nursing, 9 (5), 603-610. CASSIDY, F., AHEARN, E. & CARROLL, B. (2001) Substance abuse in bipolar disorder. Bipolar Disorders, 3 (4), 181-188. CASTLE, D. (2004) Improving people's lives: the balance between biology and psychosocial intervention research for the functional psychoses? Journal of Mental Health. Vol. 13(3), 229-233. CASTLE, D., MORGAN, V. & JABLENSKY, A. (2002) Antipsychotic use in Australia: the patients' perspective. Australian and New Zealand Journal of Psychiatry, 36 (5), 633-641. CASTLE, D., BERK, M., BERK, L., LAUDER, S. CHAMBERLAIN, J. & GILBERT, M. (2007) Pilot of group intervention for bipolar disorder. International Journal of Psychiatry in Clinical Practice. Vol. 11(4), 279-284. CHAN, B. & PARKER, G. (2004) Some recommendations to assess depression in Chinese people in Australasia. Australian and New Zealand Journal of Psychiatry, 38 (3), 141-147.

Page | 260

CHAN, D. W. (2001) The Mad Genius Controversy: does the East differ from the West? . Education Journal, 29 (1), 1-16. CHAPPLE, A. & ROGERS, A. (1999) 'Self-care' and its relevance to developing demand management strategies: a review of qualitative research. Health & Social Care in the Community, 7 (6), 445-454. CHARMAZ, K. (1990) 'Discovering' chronic illness: using grounded theory. Social Science & Medicine, 30, 1161-1172. CHARMAZ, K. (1997) Good Days, Bad Days: the self in chronic illness and time, New Brunswick, Rutgers University Press. CHARMAZ, K. (1999) Stories of Suffering: Subjective Tales and Research Narratives. Qual Health Res, 9 (3), 362-382. CHENGAPPA, K., LEVINE, J., GERSHON, S. & KUPFER, D. (2000) Lifetime prevalence of substance or alcohol abuse and dependence among subjects with bipolar I and II disorders in a voluntary registry. Bipolar Disorders, 2 (3), 191-195. CIAMBRONE, D. (2001) Illness and other assaults on self: the relative impact of HIV/AIDS on women's lives. Sociology of Health and Illness, 23 (4), 517-540. CLARKE, D. M. & KISSANE, D. W. (2002) Demoralization: its phenomenology and importance. Australian and New Zealand Journal of Psychiatry, 36 (6), 733 - 742. CLARKE, L. (2004) The value of qualitative research. Nursing Standard, 18 (52), 41-45. CLARKE, L. H. (2003) Overcoming Ambivalence: The Challenges of Exploring Socially Charged Issues. Qual Health Res, 13 (5), 718-735. CLEARY, M., HUNT, M., WALTER & FREEMAN, A. (2006) The patient's view of need and caregiving consequences: a cross-sectional study of inpatients with severe mental illness. Journal of Psychiatric and Mental Health Nursing, 13 (5), 506-514. CLEMENT, S., SINGH, S. & BURNS, T. (2003) Status of bipolar disorder research: Bibliometric study. The British Journal of Psychiatry, 182 (2), 148-152. CME INSTITUTE OF PHYSICIANS POSTGRADUATE PRESS, INC.(2007) ‘Academic Highlights - Managing Bipolar Disorder from Urgent Situations to Maintenance Therapy, Part I: Urgent Situations’ in J Clin Psychiatry, Vol. 68(7): 1129-1138. COHEN, L. (2005) Optimising adherence and outcome in bipolar disorder. Psychiatric Times, April (Supplement), 28-32. COHEN, M., BAKER, G., COHEN, R. & FROMM-REICHMANN, F. (Eds.) (1964) An Intensive Study of Twelve Cases of Manic-Deyressive Psychosis Macmillan. COLE, B., KANE, C., KILLEEN, M., MOHR, W., NIELD-ANDERSON, L. & KURLOWICZ, L. (2000) ISPN White Paper, April 2000: Responding to 'The Global Burden of Disease'. International Society of Psychiatric-Mental Health Nurses, 1-3. COLE, N. (2004) A bipolar journey. Australian and New Zealand Journal of Psychiatry, 38 (9), 671-673. CONRAD, P. (1990) Qualitative research on chronic illness: a commentary on method and conceptual development Soc. Sci. Med, 30 (11), 1257-1263.

CORYELL, W., SCHEFTNER, W., KELLER, M., ENDICOTT, J., MASER, J. & KLERMAN, G. (1993) The enduring psychosocial consequences of mania and depression The American Journal of Psychiatry, 150 (5), 720-727. CROCKER, J. & PARK, L. E. (2004) The Costly Pursuit of Self-Esteem. Psychological Bulletin, 130 (3), 392-414. CROUCH, M. & MCKENZIE, H. (2006) The logic of small samples in interview-based qualitative research. Social Science Information, 45 (4), 483-499. CROWLEY, K. (2000) The power of procovery in healing mental illness, Los Angeles, Kennedy Carlisle. CUTCLIFFE, J. & GOWARD, P. (2000) Mental health nurses and qualitative research methods: a mutual attraction? Journal of Advanced Nursing, 31 (3), 590-598.

Page | 261

DARLING, C., OLMSTEAD, S., LUND, V. & FAIRCLOUGH, J. (2008) Bipolar disorder: medication adherence and life contentment. Archives of Psychiatric Nursing, 22 (3), 113-126. DAS GUPTA, R. & GUEST, J. (2002) Annual cost of bipolar disorder to UK society. The British Journal of Psychiatry, 180 (3), 227-233. DEL PORTO, J. A. (2004) Bipolar disorder: evolution of the concept and current controversies. Rev Bras Pisuiatr, 26 (3), 3-6. DENZIN, N. & LINCOLN, Y. (Eds.) (2003) The landscape of qualitative research : theories and issues, CA, U.S.A, Sage. DETIENNE, M. (2001) Forgetting Delphi between Apollo and Dionysus. Classical Philology, 96 (2), 147-158. DEWHURST, W. G. (1992) Melancholia and Depression: From Hippocratic Times to Modern Times. Journal of Psychiatry Neuroscience, 12 (2), 81-83. DICKSON, A., KNUSSEN, C. & FLOWERS, P. (2008) "That was my old life; it's almost like a past-life now": Identity crisis, loss and adjustment amongst people living with Chronic Fatigue Syndrome. Psychology & Health, 23 (4), 459-476. DISEASE CONTROL PRIORITIES PROJECT (2006) Mental and Neurological Disorders: July 2006. Fogarty International Center for the U.S National Institutes of Health. DOLS, M. W. (1987) Insanity and its treatment in Islamic society. Medical History, 31, 1-14. DOLS, M. W. (1992) Majnūn : the madman in medieval Islamic society, Oxford, Clarendon Press. DRABKIN, I. E. (1955) Remarks on Ancient Psychopathology. Isis, 46 (3), 223-234. DUFFY, A., ALDA, M., CRAWFORD, L., MILIN, R. & GROF, P. (2007) The early manifestations of bipolar disorder: a longitudinal prospective study of the offspring of bipolar parents. Bipolar Disorders, 9 (8), 828-838. DUNNER, D. & FIEVE, R. (1974) Clinical Factors in Lithium Carbonate Prophylaxis Failure. Arch Gen Psychiatry, 30 (2), 229-233. DUNNER, D., GERSHON, E. & GOODWIN, F. (1976) Heritable factors in the severity of affective illness. Biol Psychiatry, 11 (1), 31-42. ECONOMICS, A. & AUSTRALIA, S. (2003) Bipolar Disorder: Costs: An analysis of the burden of bipolar disorder and related suicide in Australia - An Access Economics Report for SANE Australia 2003. Melbourne. EDWARD, K. (2005) The phenomenon of resilience in crisis care mental health clinicians. International Journal of Mental Health Nursing, 14 (2), 142-148. EDWARDS, C. & TITCHEN, A. (2003) Research into patients' perspectives: relevance and usefulness of phenomenological sociology. Journal of Advanced Nursing, 44 (5), 450-460. EID, M. & DIENER, E. (2001) Norms for experiencing emotions in different cultures: Inter- and intranational differences. Journal of Personality and Social Psychology, 81 (5), 869-885. EISENBRUCH, M. (1990) Classification of natural and supernatural causes of mental distress. Development of a Mental Distress Explanatory Model Questionnaire. Journal of Nervous and Mental Disease, 178 (11), 712-719. ELISHA, D., CASTLE, D. & HOCKING, B. (2006) Reducing social isolation in people with mental illness: the role of the psychiatrist. Australasian Psychiatry, 14 (3), 281-284. ESTROFF, S. (1981) Psychiatric Deinstitutionalization: A Sociocultural Analysis. Journal of Social Issues, 37 (3), 116-132. ETZERSDORFER, E. & SCHELL, G. (2006) Suicidality in Bipolar Disorders: A Psychoanalytic Contribution. Archives of Suicide Research, 10 (3), 283 - 294. EYERS, K. & PARKER, G. (Eds.) (2008) Mastering bipolar disorder: an insider's guide to managing mood swings and finding balance, Crows Nest, Allen & Unwin. EZZY, D. (2000) Illness narratives: time, hope and HIV. Social Science & Medicine, 50 (5), 605-617. FEATHERSTONE, M., HEPWORTH, M. & TURNER, B. S. (Eds.) (1991) The Body : social process and cultural theory, London, Sage Publications.

Page | 262

FINE, M., WEIS, L., WESEEN, S. & WONG, L. (2003) For Whom? Qualitative research, representations and social responsibilities. IN DENZIN, N. L., YVONNA (Ed.) The landscape of qualitative research : theories and issues. Thousand Oaks, C.A, Sage FLAWS, B. (2001) Withdrawal and mania: the yin and yang of psychiatric disease in Chinese medicine. Townsend Letter for Doctors and Patients, April. FOK, S., CHAIR, S. & LOPEZ, V. (2005) Sense of coherence, coping and quality of life following a critical illness. Journal of Advanced Nursing, 49 (2), 173-181. FOSSEY, E., HARVEY, C., MCDERMOTT, F. & DAVIDSON, L. (2002) Understanding and evaluating qualitative research. Australian and New Zealand Journal of Psychiatry, 36 (6), 717-732. FOSTER, K., MCALLISTER, M. & O'BRIEN, L. (2006) Extending the boundaries: Autoethnography as an emergent method in mental health nursing research. International Journal of Mental Health Nursing, 15 (1), 44-53. FRANK, A. (2000) Illness and autobiographical work: dialogue as narrative destabilization. Qualitative Sociology, 23 (1), 135-156. FRANK, A. W. (1997) The Wounded Storyteller: Body, Illness, and Ethics U.S.A, University of Chicago Press. FRANK, A. W. (2004) After Methods, the Story: From Incongruity to Truth in Qualitative Research. Qual Health Res, 14 (3), 430-440. FRANK, A. W. (2005) What Is Dialogical Research, and Why Should We Do It? Qual Health Res, 15 (7), 964-974. FRANK, E., HLASTALA, S., RITENOUR, A., HOUCK, P., TU, X., MONK, T., MALLINGER, A. & KUPFER, D. (1997) Inducing lifestyle regularity in recovering bipolar disorder patients: results from the maintenance therapies in bipolar disorder protocol. Society of Biological Psychiatry, 41, 1165-1173. FRANK, E., SWARTZ, H. A. & KUPFER, D. J. (2000) Interpersonal and social rhythm therapy: managing the chaos of bipolar disorder. Biological Psychiatry, 48 (6), 593-604. FREEMAN, T. (1971) Observations on Mania. Int. J. Psycho-Anal, 52, 479-486. FROMM-REICHMANN, F. (1948) Intensive Psychotherapy of Manic-Depressives: A Preliminary Report. Confinia Neurologica 9,158-165. FRY, S. (2006) The Secret Life of the Manic Depressive. British Broadcasting Corporation. FURMAN, R., COLLINS, K., LANGER, C. & BRUCE, E. A. (2006) Inside a provider's perspective: Using practitioner poetry to explore the treatment of persons with mental illness. The Arts in Psychotherapy, 33 (4), 331-342. GAGRAT, D. & SPIRO, H. (1980) ‘Social, cultural, and epidemiologic aspects of mania’, in Belmaker, R. & van Praag, H. (Eds.) Mania: An Evolving Concept. New York, Spectrum Publications. GAUDIANIO, B. & MILLER, I. W. (2006) Patients' expectancies, the alliance in pharmacotherapy, and treatment outcomes in bipolar disorder. Journal of consulting and clinical psychology 74 (4), 671-677. GEANELLOS, R. (2005) Adversity as opportunity: Living with schizophrenia and developing a resilient self. International Journal of Mental Health Nursing, 14 (1), 7-15. GERSON, S. (1993) Ayurveda: the ancient Indian healing art, Boston, Element Books. GHAEMI, S. N. (2007) Feeling and Time: The Phenomenology of Mood Disorders, Depressive Realism, and Existential Psychotherapy. Schizophr Bull, 33 (1), 122-130. GITLIN, M. J., SWENDSEN, J., HELLER, T. L. & HAMMEN, C. (1995) Relapse and impairment in bipolar disorder. Am J Psychiatry, 152 (11), 1635-1640. GLOVER, H. (2005) Recovery based service delivery: are we ready to transform the words into a paradigm shift? Australian e-Journal for the Advancement of Mental Health, 4 (3), 1-4. GOLDBERG, J. & HARROW, M. (2005) Subjective life satisfaction and objective functional outcome in bipolar and unipolar mood disorders: A longitudinal analysis. Journal of Affective Disorders, 89 (1-3), 79-89.

Page | 263

GOLDSTEIN, B. & LEVITT, A. (2008) The specific burden of comorbid anxiety disorders and of substance use disorders in bipolar I disorder. Bipolar Disorders, 10 (1), 67-78. GOLDSTEIN, B., STROBER, M., BIRMAHER, B., AXELSON, D., ESPOSITO-SMYTHERS, C., GOLDSTEIN, T., LEONARD, H., HUNT, J., GILL, M., IYENGAR, S., GRIMM, C., YANG, M., RYAN, N. & KELLER, M. (2008) Substance use disorders among adolescents with bipolar spectrum disorders. Bipolar Disorders, 10 (4), 469-478. GOODEY, C. F. (2004) “Foolishness” in Early Modern Medicine and the Concept of Intellectual Disability. Medical History, 48 (3), 289-310. GOODWIN, F. & JAMISON, K. (2007) Manic-Depressive: Bipolar Disorders and Recurrent Depression, New York, Oxford University Press. GOODWIN, F. & JAMISON, K. R. (1990) Manic-Depressive Illness U.S.A, Oxford University Press. GORLOW, L. & KATKOVSKY, W. (Eds.) (1968) Readings in the psychology of adjustment, New York, McGraw-Hill GRANT, B., HASAIN, D., STINSON, F., DAWSON, D., CHOU, S., RUAN, J. & PICKERING, R. (2004) Prevalence, correlates and comorbidity of Bipolar I Disorder and Axis I and II Disorders: results from the National Epidemiologic Survey on Alcohol and Related Conditions. Journal of Clinical Psychiatry, 65, 948-958. GREEN, J. & THOROGOOD, N. (2004) Qualitative methods for health research, London, Sage. GREEN, M. J., CAHILL, C. M. & MALHI, G. S. (2007) The cognitive and neurophysiological basis of emotion dysregulation in bipolar disorder. Journal of Affective Disorders, 103 (1-3), 29-42. GREENBERG, L. (Ed.) (1996) Allowing and accepting of emotional experience New Jersey, Lawrence Erlbaum Associates, Publishers. GREENHOUSE, W. J., MEYER, B. & JOHNSON, S. L. (2000) Coping and medication adherence in bipolar disorder. Journal of Affective Disorders, 59 (3), 237-241. GRINYER, A. (2004) The Narrative Correspondence Method: What a Follow-Up Study Can Tell Us about the Longer Term Effect on Participants in Emotionally Demanding Research. Qual Health Res, 14 (10), 1326-1341. GROSS, C. (1999) 'Psychosurgery' in Renaissance art. Trends Neuroscience, 22, 429-431. GROUNDS, D. & ARMSTRONG, J. (1992) Ecstasy and Agony: living with mood swings, Victoria, Lothian Publishing Company. GUTIÉRREZ-ROJAS, L., GURPEGUI, M., AYUSO-MATEOS, J., GUTIÉRREZ-ARIZA, J., RUIZ-VEGUILLA, M. & JURADO, D. (2008) Quality of life in bipolar disorder patients: a comparison with a general population sample. Bipolar Disorders, 10 (5), 625-634. HALL, W. A. & CALLERY, P. (2001) Enhancing the Rigor of Grounded Theory: Incorporating Reflexivity and Relationality. Qual Health Res, 11 (2), 257-272. HAMILTON, B. & ROPER, C. (2006) Troubling 'insight': power and possibilities in mental health care. Journal of Psychiatric & Mental Health Nursing, 13 (4), 416-422. HAMKINS, S. (2005) Introducing narrative psychiatry: narrative approaches to initial psychiatric consultations The International Journal of Narrative Therapy and Community Work, 1, 5-17. HAVENS, L. & GHAEMI, N. (2005) Existential Despair and Bipolar Disorder: The Therapeutic Alliance as a Mood Stabilizer. American Journal of Psychotherapy, 59 (2), 137-147. HAYNE, Y. (2003) Experiencing psychiatric diagnosis: client perspectives on being named mentally ill. Journal of Psychiatric & Mental Health Nursing, 10 (6), 722-729. HAYNE, Y. & YONGE, O. (1997) The lifeworld of the chronic mentally ill: Analysis of 40 written personal accounts. Archives of Psychiatric Nursing, 11 (6), 314-324. HAYWARD, P., WONG, G., BRIGHT, J. A. & LAM, D. (2002) Stigma and self-esteem in manic depression: an exploratory study. Journal of Affective Disorders, 69 (1-3), 61-67. HEALEY, C., PETERS, S., KINDERMAN, P., MCCRACKEN, C. & MORRISS, R. (2009a) Reasons for substance use in dual diagnosis bipolar disorder and substance use disorders: a qualitative study Journal of Affective Disorders, 113 (1-2), 118-126.

Page | 264

HEALEY, C., PETERS, S., KINDERMAN, P., MCCRACKEN, C. & MORRISS, R. (2009b) Reasons for substance use in dual diagnosis bipolar disorder and substance use disorders: A qualitative study. Journal of Affective Disorders, 113 (1-2), 118-126. HELMAN, C. (2007) Culture, Health and Illness, London, Hodder Arnold. HENRY, C., SWENDSEN, J., VAN DEN BULKE, D., SORBARA, F., DEMOTES-MAINARD, J. & LEBOYER, M. (2003) Emotional hyper-reactivity as a fundamental mood characteristic of manic and mixed states. European Psychiatry, 18 (3), 124-128. HIGGINS, E. (Ed.) (1996) Emotional experiences: the pains and pleasures of distinct regulatory systems New Jersey, Lawrence Erlbaum Associates. HIGHET, N. & MCNAIR, B. (2004) Beyondblue Research Update: The impact of living with bipolar disorder beyondblue. HIGHET, N., MCNAIR, B., THOMPSON, M., DAVENPORT, T. & HICKIE, I. (2004) Experience with treatment services for people with bipolar disorder MJA, 181 (1), S47-S51. HIRSCHFELD, R., LEWIS, L. & VORNIK, L. (2003) Perceptions and impact of Bipolar Disorder: how far have we really come? Results of the National Depressive and Manic-depressive Association 2000 Survey of Individuals with Bipolar Disorder J Clin Psychiatry, 64 (2), 161-174. HOLZINGER, A., LA-FFLER, W., MAOELLER, P., PRIEBE, S. & ANGERMEYER, M. (2002) Subjective Illness Theory and Antipsychotic Medication Compliance By Patients With Schizophrenia. The Journal of Nervous and Mental Disease, 190 (9), 597-603. HOUSTON, R. A. (2003) The Face of Madness in Eighteenth- and Early Nineteenth-Century Scotland. Eighteenth-Century Life, 27 (2), 49-66. HUMMELVOLL, J. & SEVERINSSON, E. (2002) Nursing staffs' perceptions of persons suffering from mania in acute psychiatric care. Journal of Advanced Nursing, 38 (4), 416-424. HURLEY, D. R. (1996) Dejanira and the Physicians: Aspects of Hysteria in Handel's "Hercules". The Musical Quarterly, 80 (3), 548-561. HYDÉN, L. (1997) Illness and narrative. Sociology of Health & Illness, 19 (1), 48-69. HYMAN, S., CHISHOLM, D., KESSLER, R., PATEL, V. & WHITEFORD, H. (2006) Mental Disorders. IN BANK, W. (Ed.) Disease Control Priorities in Developing Countries. 2nd ed. New York, Oxford University Press. INDER, M., CROWE, M., MOOR, S., LUTY, S., CARTER, J. & JOYCE, P. (2008) "I actually don't know who I am": the impact of bipolar disorder on the development of self. Psychiatry, 71 (2), 123-133. IOSIF, A. & BALLON, B. (2005) Bad Moon Rising: the persistent belief in lunar connections to madness CMAJ, 173 (12), 1498-1500. IRONSIDE, P. M., SCHECKEL, M., WESSELS, C., BAILEY, M. E., POWERS, S. & SEELEY, D. K. (2003) Experiencing Chronic Illness: Cocreating New Understandings. Qual Health Res, 13 (2), 171- 183. JACK, S. (2006) Utility of Qualitative Research Findings in Evidence-Based Public Health Practice. Public Health Nursing, 23 (3), 277-283. JACKSON, S. W. (1972) Unusual mental states in medieval Europe. I. Medical syndromes of mental disorder: 400-1100 A.D. Journal of the History of Medicine and Allied Sciences, 27 (3), 262- 297. JAGO, B. (2001) Chronicling an Academic Depression. Journal of Contemporary Ethnography, 31 (6), 729-757. JAMISON, K. R. (1993) Touched with Fire: manic-depressive illness and the artistic temperament, New York, Maxwell Macmillan International. JAMISON, K. R. (2004) Exuberance: The Passion for Life, New York, Random House. JOHNSON, L., LUNDSTRÖM, O., ÅBERG-WISTEDT, A. & MATHÉ, A. (2003) Social support in bipolar disorder: its relevance to remission and relapse. Bipolar Disorders, 5 (2), 129-137. JOHNSON, S. & CARVER, C. (2006) Extreme Goal Setting and Vulnerability to Mania Among Undiagnosed Young Adults. Cognitive Therapy and Research, 30 (3), 377-395.

Page | 265

JOHNSON, S. & MIKLOWITZ, D. (2006) The Psychopathology and treatment of bipolar disorder Annu. Rev. Clin. Psychol, 2, 199-235. JOHNSON, S. L. (2005) Mania and dysregulation in goal pursuit: a review. Clinical Psychology Review, 25 (2), 241-262. JONES, S., TAI, S., EVERSHED, K., KNOWLES, R. & BENTALL, R. (2006) Early detection of bipolar disorder: a pilot familial high-risk study of parents with bipolar disroder and their adolescent children. Bipolar Disorders, 8, 362-372. JONES, S. H. (2001) Circadian rhythms, multilevel models of emotion and bipolar disorder: an initial step towards integration? Clinical Psychology Review, 21 (8), 1193-1209. JONES, S. H. & BENTALL, R. P. (2008) A review of potential cognitive and environmental risk markers in children of bipolar parents. Clinical Psychology Review, 28 (7), 1083-1095. JUDD, L., AKISKAL, H., SCHETTLER, P., ENDICOTT, J., LEON, A., SOLOMON, D., CORYELL, W., MASER, J. & KELLER, M. (2005) Psychosocial disability in the course of Bipolar I and II Disorders: a prospective, comparative, longitudinal study Arch. Gen. Psychiatry, 62, 1322-1330. JUDD, L. L., AKISKAL, H. S., ZELLER, P. J., PAULUS, M., LEON, A. C., MASER, J. D., ENDICOTT, J., CORYELL, W., KUNOVAC, J. L., MUELLER, T. I., RICE, J. P. & KELLER, M. B. (2000) Psychosocial Disability During the Long-term Course of Unipolar Major Depressive Disorder. Arch Gen Psychiatry, 57 (4), 375-380. KARAMPELAS, I., BOEV, A. N., FOUNTAS, K. N. & ROBINSON, J. S. (2004) Sciatica: a historical perspective on early views of a distinct medical syndrome. Neurosurgical FOCUS, 16 (1), 1-4. KARP, D. (1992) Illness ambiguity and the search for meaning: a case-study of a self-help group for affective disorders. Journal of Contemporary Ethnography, 21 (2), 139-170. KAUFMAN, K. R. (2003) Editorial: The Ups and Downs of Bipolar Disorder. Annals of Clinical Psychiatry, 15 (2), 81-84. KAYMAZ, N., KRABBENDAM, L., DE GRAAF, R., NOLEN, W., TEN HAVE, M. & VAN OS, J. (2006) Evidence that the urban environment specifically impacts on the psychotic but not the affective dimension of bipolar disorder. Social Psychiatry and Psychiatric Epidemiology, 41 (9), 679-685. KELLE, U. (2005) "Emergence" vs. "Forcing" of Empirical Data? A Crucial Problem of "Grounded Theory" Reconsidered. KELLY, C. M. & JORM, A. F. (2007) Stigma and mood disorders. Current Opinion in Psychiatry, 20 (1), 13-16 10.1097/YCO.0b013e3280113cf5. KELLY, G., LAWRENCE, J. A. & DODDS, A. E. (2005) Women's Developmental Experiences of Living with Type 1 Diabetes. KEMMIS, S. (2006) Exploring the relevance of critical theory for action research: emancipatory action research in the footsteps of Jurgen Habermas. IN REASON, P. B., HILARY. (Ed.) Handbook of Action Research London, Sage. KEMP, S. & FLETCHER, G. J. O. (1993) The medieval theory of the inner senses. American Journal of Psychology, v106 (n4), p559(18). KERNIS, M., CORNELL, D., SUN, C.-R., BERRY, A. & HARLOW, T. (1993) There's more to self-esteem than whether it is high or low: the importance of stability of self-esteem. Journal of Personality and Social Psychology, 65 (6), 1190-1204. KESSING, L., HANSEN, H., RUGGERI, M. & BECH, P. (2006) Satisfaction with treatment among patients with depressive and bipolar disorders. Social Psychiatry and Psychiatric Epidemiology, 41 (2), 148-155. KESWANI, N. (Ed.) (1974) The Science of Medicine and Physiological Concepts in Ancient and Medieval India, India, Thomson Press. KING, G., CATHERS, T., BROWN, E., SPECHT, J. A., WILLOUGHBY, C., POLGAR, J. M., MACKINNON, E., SMITH, L. K. & HAVENS, L. (2003) Turning Points and Protective Processes in the Lives of People With Chronic Disabilities. Qual Health Res, 13 (2), 184-206.

Page | 266

KING, L. (1999) A brief history of psychiatry: millennia past and present. Annals of Clinical Psychiatry, 11 (1), 3-12. KITTO, S., CHESTERS, J. & GRBRICH, C. (2008) Quality in qualitative research: criteria for authors and assessors in the submission and assessment of qualitative research articles for the Medical Journal of Australia. Medical Journal of Australia, 188 (4), 243-246. KLEINMAN, A. (1988) The Illness Narratives: Suffering, Healing and the Human Condition, U.S.A, Basic Books. KLERMAN, G. (1981) Depression in the medically ill. . Psychiatr Clin North Am, 4 (2), 301-317. KOIVISTO, K., JANHONEN, S. & VAISANEN, L. (2004) Patients' experiences of being helped in an inpatient setting. Journal of Psychiatric & Mental Health Nursing, 11 (3), 268-275. KOMAN, S. (2008) An opportunity to improve lives and the bottom line. Behavioural Healthcare, 28 (6), 20-23. KOOPOWITZ, L., CHUR-HANSEN, A., REID, S. & BLASHKI, M. (2003) The subjective experience of patients who received electroconvulsive therapy. Australian and New Zealand Journal of Psychiatry, 37 (1), 49-54. KOUKOPOULOS, A., SANI, G., KOUKOPOULOS, A. E., MANFREDI, G., PACCHIAROTTI, I. & GIRARDI, P. (2007) Melancholia agitata and mixed depression. Acta Psychiatrica Scandinavica, 115 (s433), 50-57. KRALIK, D. (2002) The quest for ordinariness: transition experienced by midlife women living with chronic illness. Journal of Advanced Nursing, 39 (2), 146-154. KRALIK, D., KOCH, T., PRICE, K. & HOWARD, N. (2004) Chronic illness self-management: taking action to create order. Journal of Clinical Nursing, 13 (2), 259-267. LADSON-BILLINGS, G. (2003) Racialised discourses and ethnic epistemologies. IN DENZIN, N. L., YVONNA (Ed.) The landscape of qualitative research : theories and issues. London, Sage. LAING, R. (1960) The Divided Self: An Existential Study in Sanity and Madness, London, Tavistock Publications. LAKEMAN, R. (2004) Standardized routine outcome measurement: Pot holes in the road to recovery. International Journal of Mental Health Nursing, 13 (4), 210-215. LAM, D., BRIGHT, J., JONES, S., HAYWARD, P., SCHUCK, N., CHISHOLM, D. & SHAM, P. (2000) Cognitive Therapy for Bipolar Illness-A Pilot Study of Relapse Prevention Cognitive Therapy and Research 24 (5), 503-520. LAM, D. & WONG, G. (2005) Prodromes, coping strategies and psychological interventions in bipolar disorder. Clinical Psychology Review, 25 (8), 1028-1042. LAM, D., WRIGHT, K. & SMITH, N. (2004) Dysfunctional assumptions in bipolar disorder. Journal of Affective Disorders, 79 (1-3), 193-199. LAWTON, J. (2003) Lay experiences of health and illness: past research and future agendas. Sociology of Health & Illness, 25 (3), 23-40. LEARY, M. (2007) Motivational and emotional aspects of the self Annu. Rev. Pscyhol, 58, 317-344. LEDER, D. (1990) The Absent Body, U.S.A, University of Chicago Press. LEE, A. & POOLE, G. (2005) An Application of the Transactional Model to the Analysis of Chronic Illness Narratives. Qual Health Res, 15 (3), 346-364. LEIGH, D. (1955) John Haslam, M. D. -- 1764-1844: Apothecary to Bethlem. J Hist Med Allied Sci, X (1), 17-44. LENZI, A., LAZZERINI, F., MARAZZITI, D., RAFFAELLI, S., ROSSI, G. & CASSANO, G. (1993) Social class and mood disorders: clinical features. Social Psychiatry and Psychiatric Epidemiology, 28 (2), 56-59. LEVITAN, H. (1968) The Turn to Mania. The Psychoanalytic Quarterly, 37, 56-42. LIM, L., NATHAN, P., O'BRIEN-MALONE, A. & WILLIAMS, S. (2004) A Qualitative Approach to Identifying Psychosocial Issues Faced by Bipolar Patients. The Journal of Nervous and Mental Disease, 192 (12), 810-817.

Page | 267

LINCOLN, Y. G., E. (Ed.) (2003) Chapter 7: Three Epistemological Stances for Qualitative Inquiry: Interpretivism, Hermeneutics, and Social Constructionism U.S.A, Sage Publications. LITTLE, M., JORDENS, C., PAUL, K. & PHILLIPSON, B. (1998) Liminality: a major category of the experience of cancer illness Social Science and Medicine, 47 (10), 1485 - 1494. LOBBAN, F., BARROWCLOUGH, C. & JONES, S. (2003) A review of the role of illness models in severe mental illness. Clinical Psychology Review, 23 (2), 171-196. LOHNE, V. & SEVERINSSON, E. (2005) Patients' experiences of hope and suffering during the first year following acute spinal cord injury. Journal of Clinical Nursing, 14 (3), 285-293. LÓPEZ-MUÑOZ, F., VIETA, E., RUBIO, G., GARCÍA-GARCÍA, P. & ALAMO, C. (2006) Bipolar disorder as an emerging pathology in the scientific literature: A bibliometric approach. Journal of Affective Disorders, 92 (2-3), 161-170. LOZANO, B. & JOHNSON, S. (2001) Can personality traits predict increases in manic and depressive symptoms? . Journal of Affective Disorders, 63, 103-111. LUNDE, A. V., FASMER, O. B., AKISKAL, K. K., AKISKAL, H. S. & OEDEGAARD, K. J. (2009) The relationship of bulimia and anorexia nervosa with bipolar disorder and its temperamental foundations. Journal of Affective Disorders, 115 (3), 309-314. LUNDE, A. V., FASMER, O. B., AKISKAL, K. K., AKISKAL, H. S. & OEDEGAARD, K. J. (In Press) The relationship of bulimia and anorexia nervosa with bipolar disorder and its temperamental foundations. Journal of Affective Disorders, In Press, Corrected Proof. LUNDMAN, B. & JANSSON, L. (2007) The meaning of living with a long-term disease. To revalue and be revalued. Journal of Clinical Nursing, 16 (7b), 109-115. LUOMA, J. B., TWOHIG, M. P., WALTZ, T., HAYES, S. C., ROGET, N., PADILLA, M. & FISHER, G. (2007) An investigation of stigma in individuals receiving treatment for substance abuse. Addictive Behaviours, 32 (7), 1331-1346. LYON, H., STARTUP, M. & BENTALL, R. (1999) Social cognition and the manic defense : Attributions, selective attention, and self-schema in bipolar affective disorder Journal of Abnormal Psychology, 108 (2), 273-282. LYSAKER, P. & BUCK, K. (2006) Moving Toward Recovery Within Clients' Personal Narratives: Directions for a Recovery-Focused Therapy. Journal of Psychosocial Nursing & Mental Health Services, 44 (1), 28. MACKIN, P. & YOUNG, A. (2004) Rapid cycling bipolar disorder: historical overview and focus on emerging treatments. Bipolar Disorders, 6 (6), 523-529. MACQUEEN, M., YOUNG, L. & JOFFE, R. (2001) A review of psychosocial outcome in patients with bipolar disorder. Acta Psychiatrica Scandinavica, 103 (3), 163-170. MACRAN, S., ROSS, H., HARDY, G. & SHAPIRO, G. (1999) The importance of considering clients' perspectives in psychotherapy research. Journal of Mental Health, 8 (4), 325. MARKOWITZ, F. (2001) Modeling processes in recovery from mental illness: relationships between symptoms, life satisfaction and self-concept. Journal of Health and Social Behaviour, 42 (1), 64-79. MARNEROS, A. (2001a) Expanding the group of bipolar disorders. Journal of Affective Disorders, 62 (1-2), 39-44. MARNEROS, A. (2001b) Origin and development of concepts of bipolar mixed states. Journal of Affective Disorders, 67 (1-3), 229-240. MARNEROS, A. & ANGST, J. (Eds.) (2000) Bipolar Disorders: 100 Years After Manic Depressive Insanity, The Netherlands, Kluwer Academic Publishers. MASTEN, A. (2001) Ordinary magic: resilience processes in development. American Psychologist, 56 (3), 227-238. MCCABE, R. & PRIEBE, S. (2004) Explanatory models of illness in schizophrenia: comparison of four ethnic groups. The British Journal of Psychiatry, 185 (1), 25-30. MCGRATH, P. & JARRETT, V. (2004) A slab over my head: recovery insights from a consumer’s perspective. International Journal of Psychosocial Rehabilitation, 9 (1), 67-84.

Page | 268

MCINTOSH, J. & MCKEGANEY, N. (2000) Addicts’ narratives of recovery from drug use: constructing a non-addict identity Social Science & Medicine, 50, 1501-1510. MCINTYRE, R., SOCZYNSKA, J., BOTTAS, A., BORDBAR, K., KONARSKI, J. & KENNEDY, S. (2006) Anxiety disorders and bipolar disorder: a review. Bipolar Disorders, 8 (6), 665-676. MCKENZIE, H. & CROUCH, M. (2004) Discordant feelings in the lifeworld of cancer survivors. Health (London), 8 (2), 139-157. MCMURRICH, S. & JOHNSON, S. (2008) The role of depression, shame-proneness and guilt- proneness in predicting criticism of relatives towards people with bipolar disorder. Behavioural Therapy, 32. MCNAIR, B., HIGHET, N., HICKIE, I. & DAVENPORT, T. (2002) Exploring the perspectives of people whose lives have been affected by depression. Medical Journal of Australia, 176 (Supplement), s69-s76. MEAD, S. & COPELAND, M. (2000) What recovery means to us: consumers' perspectives. Community Mental Health Journal, 36 (3), 315-329. MECHANIC, D. & VOLKART, E. (1960) Illness behaviour and medical diagnoses. Journal of Health and Health Behaviour, 1 (2), 88-94. MEHTA, A. & CALABRESE, J. (2005) Rapid cycling bipolar disorder: update on phenomenology and treastment. Medscape Psychiatry and Mental Health. MELECHI, A. (2003) Fugitive Minds: On Madness, Sleep and other Twilight Afflictions, U.K, Random House Group Ltd. MEYER, B., BEEVERS, C. & JOHNSON, S. (2004) Goal Appraisals and vulnerability to bipolar disorder: a personal projects analysis. Cognitive Therapy and Research, 28 (2), 173. MEYER, B., RAHMAN, R. & SHEPHERD, R. (2007) Hypomanic personality features and addictive tendencies. Personality and Individual Differences, 42 (4), 801-810. MEYER, T. D. & KRUMM-MERABET, C. (2003) Academic performance and expectations for the future in relation to a vulnerability marker for bipolar disorders: the hypomanic temperament. Personality and Individual Differences, 35 (4), 785-796. MICHALAK, E., YATHAM, L. & LAM, R. (2005) Quality of life in bipolar disorder: a review of the literature Health and Quality of Life Outcomes, 3 (62), 17. MICHALAK, E., YATHAM, L., MAXWELL, V., HALE, S. & LAM, H. (2007) The impact of bipolar disorder upon work functioning: a qualitative analysis. Bipolar Disorders, 9 (1-2), 126-143. MIDELFORT, H. C. (1994) Mad Princes of Renaissance Germany, Charlottesville, University Press of Virginia. MIKLOWITZ, D. J. & JOHNSON, S. L. (2006) The Psychopathology and Treatment of Bipolar Disorder. Annual Review of Clinical Psychology, 2 (1), 199-235. MIKLOWITZ, D. J., WISNIEWSKI, S. R., MIYAHARA, S., OTTO, M. W. & SACHS, G. S. (2005) Perceived criticism from family members as a predictor of the one-year course of bipolar disorder. Psychiatry Research, 136 (2-3), 101-111. MITCHELL, L. & ROMANS, S. (2003) Spiritual beliefs in bipolar affective disorder: their relevance for illness management. Journal of Affective Disorders, 75 (3), 247-257. MITCHELL, P. (2004) Natural history and outcome of bipolar disorder. IN JOYCE P., M., P. (Ed.) Mood disorders: recognition and treatment. Sydney, UNSW Press. MITCHELL, P., KING, K. & ASLAM, M. (2004a) Symptomatology and diagnosis of bipolar disorder. IN JOYCE P., M., P. (Ed.) Mood disorders: recognition and treatment. Sydney, UNSW Press. MITCHELL, P. & MALHI, G. (2004) Bipolar depression: phenomenological overview and clinical characteristics. Bipolar Disorders, 6 (6), 530-539. MITCHELL, P., MALHI, G. & BALL, J. (2004b) The management of bipolar disorde. IN JOYCE P., M., P. (Ed.) Mood disorders: recognition and treatment. Sydney, UNSW Press. MITCHELL, P. & SCHOFIELD, P. (2004) Aetiology and pathophysiology of bipolar disorder. IN JOYCE P., M., P. (Ed.) Mood disorders: recognition and treatment. Sydney, UNSW Press.

Page | 269

MITCHELL, P., SLADE, T. & ANDREWS, G. (2004c) Twelve-month prevalence and disability of DSM-IV bipolar disorder in an Australian general population survey Psychological Medicine 34 (5), 777-785. MOLNAR, Z. (2004) Thomas Willis (1621-1675), the founder of clinical neuroscience. Nat Rev Neurosci, 5 (4), 329-335. MORRISS, R. (2004) The early warning symptom intervention for patients with bipolar affective disorder. Advances in Psychiatric Treatment, 10, 18-26. MORSE, J. M. (2000) Researching Illness and Injury: Methodological Considerations. Qual Health Res, 10 (4), 538-546. MORSE, J. M. (2002) Qualitative Health Research: Challenges for the 21st Century. Qual Health Res, 12 (1), 116-129. MORSE, J. M. & JOHNSON, J. (Eds.) (1991) The Illness experience : dimensions of suffering, Newbury Park, California, Sage Publications. MUESER, K. T., CORRIGAN, P. W., HILTON, D. W., TANZMAN, B., SCHAUB, A., GINGERICH, S., ESSOCK, S. M., TARRIER, N., MOREY, B., VOGEL-SCIBILIA, S. & HERZ, M. I. (2002) Illness Management and Recovery: A Review of the Research. Psychiatr Serv, 53 (10), 1272-1284. MÜLLER, A. & POGGENPOEL, M. (1996) Patients' internal world experience of interacting with psychiatric nurses. Archives of Psychiatric Nursing, 10 (3), 143-150. MURRAY, C. & LOPEZ, A. (Eds.) (1996) The global burden of disease: a comprehensive assessment of mortality and disability from diseases, injuries, and risk factors in 1990 and projected to 2020., Massachusetts, Harvard University Press. NAKAGAWA, A., GRUNEBAUM, M., SULLIVAN, G., CURRIER, D., ELLIS, S., BURKE, A., BRENT, D., MANN, J. & OQUENDO, M. (2008) Comorbid anxiety in bipolar disorder: does it have an independent effect on suicidality? Bipolar Disorders, 10 (4), 530-538. NUNKOOSING, K. (2005) The Problems With Interviews. Qual Health Res, 15 (5), 698-706. NUTTON, V. (2004) Ancient Medicine, U.K, Routledge. O'BRIEN, L. (2001) The relationship between community psychiatric nurses and clients with severe and persistent mental illness: the client's experience. Australian and New Zealand Journal of Mental Health Nursing, 10 (3), 176-86. O'BRIEN, S. (2000) The Country of the Ill. American Quarterly, 52 (4), 765-774. OCHSNER, K. N. (2008) The Social-Emotional Processing Stream: Five Core Constructs and Their Translational Potential for Schizophrenia and Beyond. Biological Psychiatry, 64 (1), 48-61. OHMAN, M., SODERBERG, S. & LUNDMAN, B. (2003) Hovering between suffering and enduring: the meaning of living with serious chronic illness. Qual Health Res, 13 (4), 528-542. OKASHA, A. (2005) Mental health in Egypt. The Israel Journal of Psychiatry and Related Sciences, 42 (2), 116-125. OLFSON, M., FIREMAN, B., WEISSMAN, M. M., LEON, A. C., SHEEHAN, D. V., KATHOL, R. G., HOVEN, C. & FARBER, L. (1997) Mental Disorders and Disability Among Patients in a Primary Care Group Practice. Am J Psychiatry, 154 (12), 1734-1740. OLLEY, A., MALHI, G. S., MITCHELL, P. B., BATCHELOR, J., LAGOPOULOS, J. & AUSTIN, M.-P. V. (2005) When Euthymia Is Just Not Good Enough: The Neuropsychology of Bipolar Disorder. The Journal of Nervous and Mental Disease, 193 (5), 323-330. ORUM, M. (2008) The role of wellbeing plans in managing bipolar II disorder. IN PARKER, G. E., KERRIE (Ed.) Bipolar II Disorder: Modelling, Measuring and Managing. Cambridge, Cambridge University Press. OTTO, M. W., REILLY-HARRINGTON, N. & SACHS, G. S. (2003) Psychoeducational and cognitive- behavioural strategies in the management of bipolar disorder. Journal of Affective Disorders, 73 (1-2), 171-181. OVERHOLSER, W. (1959) Shakespeare's Psychiatry--And After. Shakespeare Quarterly, 10 (3), 335- 352.

Page | 270

OWENS, C., LAMBERT, H., LLOYD, K. & DONOVAN, J. (2007) Tales of biographical disintegration: how parents make sense of their sons’ suicides Sociology of Health & Illness, 30 (2), 1-18. OWENS, D. (Ed.) (1996) Men, emotions and the research process: the role of interviews in sensitive areas U.K., Avebury. PALLANTI, S., QUERCIOLI, L., PAZZAGLI, A., ROSSI, A., DELL'OSSO, L., PINI, S. & CASSANO, G. B. (1999) Awareness of Illness and Subjective Experience of Cognitive Complaints in Patients With Bipolar I and Bipolar II Disorder. Am J Psychiatry, 156 (7), 1094-1096. PARKER, G. & FLETCHER, K. (2008) Is Bipolar II Disorder increasing in prevalence? IN PARKER, G. E., KERRIE (Ed.) Bipolar II Disorder: Modelling, Measuring and Managing. Cambridge, Cambridge University Press. PARKER, G., GIBSON, N., BROTCHIE, H., HERUC, G., REES, A.-M. & HADZI-PAVLOVIC, D. (2006) Omega-3 fatty acids and mood disorders. American Journal of Psychiatry, 163 (6), 969-98. PATELIS-SIOTIS, I., YOUNG, L. T., ROBB, J. C., MARRIOTT, M., BIELING, P. J., COX, L. C. & JOFFE, R. T. (2001) Group cognitive behavioural therapy for bipolar disorder: a feasibility and effectiveness study. Journal of Affective Disorders, 65 (2), 145-153. PATERSON, B. L. (2003) The Koala has Claws: Applications of the Shifting Perspectives Model in Research of Chronic Illness. Qual Health Res, 13 (7), 987-994. PELLEGRINI, D., KOSISKY, S., NACKMAN, D., CYTRYN, L., MCKNEW, D., GERSHON, E., HAMOVIT, J. & CAMMUSO, K. (1986) Personal and social resources in children of patients with bipolar affective disorder and children of normal control subjects. Am J Psychiatry, 143 (7), 856-861. PERKINS, R. & REPPER, J. (1999) Compliance or informed choice. Journal of Mental Health, 8 (2), 117. PERLIS, R. H., SMOLLER, J. W., FAVA, M., ROSENBAUM, J. F., NIERENBERG, A. A. & SACHS, G. S. (2004) The prevalence and clinical correlates of anger attacks during depressive episodes in bipolar disorder. Journal of Affective Disorders, 79 (1-3), 291-295. PHILLIPS, L., FRANCEY, S., EDWARDS, J. & MCMURRAY, N. (2007) Stress and psychosis: Towards the development of new models of investigation. Clinical Psychology Review, 27 (3), 307-317. PICKENS (1999) Living with Serious Mental Illness: The Desire for Normalcy. Nurs Sci Q, 12, 233-239. PIERCE, R. (2004) A narrative of hope Psychiatric Rehabilitation Journal, 27 (4), 403-409. PIERRET, J. (2003) The illness experience: state of knowledge and perspectives for research. Sociology of Health & Illness, 25 (3), 4-22. POLLACK, L. E. (1995) Striving for stability with bipolar disorder despite barriers. Archives of Psychiatric Nursing, 9 (3), 122-129. POPE, M. & SCOTT, J. (2003) Do clinicians understand why individuals stop taking lithium? Journal of Affective Disorders, 74 (3), 287-291. POST, R. (2005) The impact of bipolar depression. Journal of Clinical Psychiatry, 66 (Supplement 5), 5-10. POWER, M. J. (2005) Psychological approaches to bipolar disorders: A theoretical critique. Clinical Psychology Review, 25 (8), 1101-1122. PRESS, C. I. O. P. P. (2007) Academic Highlights - Managing Bipolar Disorder from Urgent Situations to Maintenance Therapy, Part I: Urgent Situations J Clin Psychiatry, 68 (7), 1129-1138. PRICE, B. (1996) Illness careers: the chronic illness experience. Journal of Advanced Nursing, 24 (2), 275-279. QUEN, J. (1968) Early Nineteenth-Century Observations on the Insane in the Boston Almshouse. J Hist Med Allied Sci, XXIII (1), 80-85. RADDEN, J. (2003) Is this dame melancholy? Equating today's depression and past melancholia. Philosophy, Psychiatry & Psychology : PPP, 10 (1), 37 CHECK. RAMANA, R. & BEBBINGTON, P. (1995) Social influences on bipolar affective disorders. Social Psychiatry and Psychiatric Epidemiology, 30 (4), 152-160. REEVES, P. M., MERRIAM, S. B. & COURTENAY, B. C. (1999) Adaptation to HIV Infection: The Development of Coping Strategies Over Time. Qual Health Res, 9 (3), 344-361.

Page | 271

RICHARDSON, A., BAKER, M., BURNS, T., LILFORD, R. & MUIJEN, M. (2000) Guest editorial: Reflections on methodological issues in mental health research. Journal of Mental Health, 9 (5), 463. RICHARDSON, G. (2002) The metatheory of resilience and resiliency. Journal of Clinical Psychology, 58 (3), 307-321. RICHMOND, T., THOMPSON, H., DEATRICK, J. & KAUDER, D. (2000) Journey towards recovery following physical trauma. Journal of Advanced Nursing, 32 (6), 1341-1347. RIDGE, D. & ZIEBLAND, S. (2006) "The Old Me Could Never Have Done That": How People Give Meaning to Recovery Following Depression. Qual Health Res, 16 (8), 1038-1053. RIZZO, C., ESPOSITO-SMYTHERS, C., SWENSON, L., BIRMAHER, B., RYAN, N., STROBER, M., CHIAPPETTA, L., VALERI, S., HUNT, J., AXELSON, D., LEONARD, H. & KELLER, M. (2007) Factors associated with mental health service utilization among bipolar youth. Bipolar Disorders, 9 (8), 839-850. ROBERTSON, H. A., KUTCHER, S. P., BIRD, D. & GRASSWICK, L. (2001) Impact of early onset bipolar disorder on family functioning:: Adolescents' perceptions of family dynamics, communication, and problems. Journal of Affective Disorders, 66 (1), 25-37. ROBINSON, I. (1990) Personal narratives, social careers and medical courses: analysing life trajectories in autobiographies of people with Multiple Sclerosis. Social Science & Medicine, 30 (11), 1173-1186. ROE, D. & BEN-YISHAI, A. (1999) Exploring the relationship between the person and the disorder among individuals hospitalized for psychosis. Psychiatry 62, 370-380. ROSNER, F. (1989) The Medical Aphorisms of Moses Maimonides, Haifa, Maimonides Research Institute. ROSNER, F. & MUNTNER, S. (Eds.) (1900) The medical aphorisms of Moses Maimonides, New York, Yeshiva University Press. ROWAN, J. (2006) The humanistic approach to action research. IN REASON, P. B., HILARY. (Ed.) Handbook of Action Research. London, Sage. RUDGE, T. & MORSE, K. (2001) Re-awakenings?: A discourse analysis of the recovery from schizophrenia after medication change. Australian and New Zealand Journal of Mental Health Nursing, 10 (2), 66-76. RUSSELL, G. & KELLY, N. (2002) Research as Interacting Dialogic Processes: Implications for Reflexivity. RUSSELL, S., NUNN, M. & BROWNE, J. (2004) Staying Well with Bipolar Disorder: Final Report: Research Findings for beyondblue. Research Matters 1-19. RUSSELL, S. J. (2005) A Lifelong Journey: Staying Well with Manic Depression, Melbourne, Michelle Anderson Publishing RUSSELL, S. J. & BROWNE, J. L. (2005) Staying well with bipolar disorder. Australian and New Zealand Journal of Psychiatry, 39 (3), 187 - 193. SÄLLFORS, C., FASTH, A. & HALLBERG. (2002) Oscillating between hope and despair — a qualitative study. Child: Care, Health and Development, 28 (6), 495-505. SANDELOWSKI, M. (1995) Sample size in qualitative research. Research in Nursing & Health, 18 (2), 179-183. SANDELOWSKI, M. & BARROSO, J. (2003) Classifying the Findings in Qualitative Studies. Qual Health Res, 13 (7), 905-923. SANDERSON, K., ANDREWS, G., CORRY, J. & LAPSLEY, H. (2003) Reducing the burden of affective disorders: is evidence-based health care affordable? Journal of Affective Disorders, 77 (2), 109-125. SAYRE, J. (2000) The Patient's Diagnosis: Explanatory Models of Mental Illness. Qual Health Res, 10 (1), 71-83. SCHREIBER, R. (1996) (Re)Defining My Self: Women's Process of Recovery from Depression. Qual Health Res, 6 (4), 469-491.

Page | 272

SCHWANDT, T. (Ed.) (2003) Rethinking critical theory and qualitative research U.S.A, Sage Publications. SCOTT, J. & POPE, M. (2002) Self-Reported Adherence to Treatment With Mood Stabilizers, Plasma Levels, and Psychiatric Hospitalization. Am J Psychiatry, 159 (11), 1927-1929. SENA, J. F. (1973) Melancholic Madness and the Puritans. The Harvard Theological Review, 66 (3), 293-309. SHAW, C. (1999) A framework for the study of coping, illness behaviour and outcomes. Journal of Advanced Nursing, 29 (5), 1246-1255. SHAW, J., EGELAND, J., ENDICOTT, J., ALLEN, C. & HOSTETTER, A. (2005) A 10-Year Prospective Study of Prodromal Patterns for Bipolar Disorder Among Amish Youth. Journal of Amer Academy of Child & Adolescent Psychiatry, 44 (11), 1104-1111 SHEIKH, S. & FURNHAM, A. (2000) A cross-cultural study of mental health beliefs and attitudes towards seeking professional help. Social Psychiatry and Psychiatric Epidemiology, 35 (7), 326. SHER, L. (2001) Early Recognition of Inherited Disorders. Am J Psychiatry, 158 (9), 1527-a-1528. SHERMAN, J. (2001) Evolutionary origin of bipolar disorder. Psycoloquy, 158 (9), 1. SHORTER, E. (2008) Bipolar disorder in historical perspective. IN PARKER, G. (Ed.) Bipolar II Disorder: Modelling, Measuring and Managing. Cambridge, Cambridge University Press. SIMON, G. (2003) Social and economic burden of mood disorders. Society of Biological Psychiatry, 54, 208-215. SIMON, G., LUDMAN, E., BAUER, M., UNUTZER, J. & OPERSKALSKI, B. (2006) Long-term Effectiveness and Cost of a Systematic Care Program for Bipolar Disorder. Arch Gen Psychiatry, 63 (5), 500- 508. SKINNER, H. (1961) The Origins of Medical Terms, Baltimore, The Williams & Wilkins Company. SOLOMON, D. A., SHEA, M. T., LEON, A. C., MUELLER, T. I., CORYELL, W., MASER, J. D., ENDICOTT, J. & KELLER, M. B. (1996) Personality traits in subjects with bipolar I disorder in remission. Journal of Affective Disorders, 40 (1-2), 41-48. SONNE, S., BRADY, K. & MORTON, W. (1994) Substance Abuse and Bipolar Affective Disorder. The Journal of Nervous and Mental Disease, 182 (6), 349-352. SOURKES, T. (1998) An Element of Thought: Phosphorous and Mental Philosophy in the Nineteenth Century Journal of the History of the Neurosciences, 7 (2), 108-124. SPOONT, M., SAYER, N. & NELSON, D. (2005) PTSD and Treatment Adherence: The Role of Health Beliefs. The Journal of Nervous and Mental Disease, 193 (8), 515-522 STANGHELLINI, G. & BALLERINI, M. (2008) Qualitative analysis. Its use in psychopathological research. Acta Psychiatrica Scandinavica, 117 (3), 161-163. STOLL, A., LOCKE, C., MARANGELL, C. & SEVERUS, W. (1999) Omega-3 fatty acids and bipolar disorder: a review. Prostaglandins, Leukotrienes and Essential Fatty Acids, 60 (5-6), 329-337. STONE, S. (1937) Psychiatry through the ages. Journal of Abnormal Psychology, 32 (2), 131-160. STRAKOWSKI, S., TSAI, S., DELBELLO, M., CHEN, C., FLECK, D., ADLER, C., ARNDT, S. & AMICONE, J. (2007) Outcome following a first manic episode: cross-national US and Taiwan comparison. Bipolar Disorders, 9 (8), 820-827. STROUS, R. (2004) The Shoteh and Psychosis in Halakhah with Contemporary Clinical Application. The Toah u-Madda Journal, 12, 158-178. SUH, E. (2002) Culture, Identity Consistency, and Subjective Well-Being. Journal of Personality and Social Psychology, 83 (6), 1378-1391. SUH, E., DIENER, E., OISHI, S. & TRIANDIS, H. (1998) The shifting basis of life satisfaction judgments across cultures: emotions versus norms. Journal of Personality and Social Psychology, 74 (2), 483-494. TAN, S. & YEOW, M. (2004) Medicine in stamps: Philippe Pinel (1745 - 1826): liberator of the insane. Singamore Medical Journal, 45 (9), 410-412.

Page | 273

TAYLOR, M. & FINK, M. (2006) Melancholia: the diagnosis, pathophysiology and treatment of depressive illness Cambridge, Cambridge University Press. TEN HAVE, M., VOLLEBERGH, W., BIJL, R. & NOLEN, W. (2002) Bipolar disorder in the general population in the Netherlands (prevalence, consequences and care utilisation: Results from the Netherlands Mental Health Survey and Incidence Study (NEMESIS). Journal of Affective Disorders, 68 (2-3), 203-213. TERONI, F. & DEONNA, J. A. (2008) Differentiating shame from guilt. Consciousness and Cognition, 17 (3), 725-740. THOMAS, P. (2004) The many forms of bipolar disorder: a modern look at an old illness. Journal of Affective Disorders, 79 (Supplement 1), 3-8. THORNE, S., PATERSON, B., ACORN, S., CANAM, C., JOACHIM, G. & JILLINGS, C. (2002) Chronic Illness Experience: Insights from a Metastudy. Qual Health Res, 12 (4), 437-452. THORNE, S., REIMER KIRKHAM, S. & MACDONALD-EMES, J. (1997) Interpretive Description: a noncategorical qualitative alternative for developing nursing knowledge Research in Nursing & Health, 20, 169-177. TONG, A., SAINSBURY, P. & CRAIG, J. (2007) Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. International Journal for Quality in Health Care, 19 (6), 349. TOOMBS, S. (1993) The Meaning of Illness: a phenomenological account of the different perspectives of physician and patient, The Netherlands, Springer. TORREY, E. & MILLER, J. (2001) The Invisible Plague: the rise of mental illness form 1750 to the present, U.S.A, Rutgers University Press. TSE, S. & WALSH, A. (2001) How does work work for people with bipolar affective disorder? Occupational Therapy International, 8 (3), 210-225. TSE, S. & YEATS, M. (2002) What helps people with bipolar affective disorder succeed in employment: A grounded theory approach. Work, 19 (1), 47. TUSAIE, K. & DYER, J. (2004) Resilience: A Historical Review of the Construct. Holistic Nursing Practice, 18 (1), 3-10. VALTONEN, H. M., SUOMINEN, K., HAUKKA, J., MANTERE, O., ARVILOMMI, P., LEPPÄMÄKI, S. & ISOMETSÄ, E. T. (2009) Hopelessness across phases of bipolar I or II disorder: A prospective study. Journal of Affective Disorders, 115 (1-2), 11-17. VAN MEIJEL, B., VAN DER GAAG, M., SYLVAIN, R. & GRYPDONCK, M. (2004) Recognition of early warning signs in patients with schizophrenia: A review of the literature. International Journal of Mental Health Nursing, 13 (2), 107-116. VAN VALKENBURG, C., KLUZNIK, J. C., SPEED, N. & AKISKAL, H. S. (2006) Cyclothymia and labile personality: is all folie circulaire? Journal of Affective Disorders, 96 (3), 177-181. VIDICH, A. & LYMAN, S. (2003) Qualitative methods: their history in Sociology and Anthropology. IN DENZIN, N. L., YVONNA (Ed.) The Landscape of Qualitative Research: Theories and Issues. Thousand Oaks, C.A, Sage. VIETA, E. & COLOM, F. (2004) Psychological interventions in bipolar disorder: From wishful thinking to an evidence-based approach. Acta Psychiatrica Scandinavica, 110 (s422), 34-38. WARREN, B. J. (2007) Cultural Aspects of Bipolar Disorder: Interpersonal Meaning for Clients & Psychiatric Nurses. Journal of Psychosocial Nursing & Mental Health Services, 45 (7), 32. WEINSTEIN, R. (1972) Patients' perceptions of mental illness: paradigms for analysis. Journal of Health and Social Behaviour, 13 (1), 38-47. WHO (1995) The World Health Organization quality of life assessment (WHOQOL): Position paper from the World Health Organization. Social Science & Medicine, 41 (10), 1403-1409. WHO (2007) International Statistical Classification of Diseases and Related Health Problems, Tenth Revision, World Health Organisation. WHYBROW, P. C. (1997) Making sense of mania and depression. Psychology Today, v30 (n3), p34(6).

Page | 274

WHYLLIE, M. (2005) Lived time and psychopathology Philosophy, Psychiatry & Psychology : PPP, 12 (3), 173-185. WILLIAMS, B. & HEALY, D. (2001) Perceptions of illness causation among new referrals to a community mental health team: "explanatory model" or "exploratory map"? Social Science & Medicine, 53 (4), 465-476. WILLIAMS, G. (2003) Resisting the Psychotic Library: Periphrasis and Paranoia in Burton's Anatomy of Melancholy. Exemplaria, 15 (1), 199-202. WILLIAMS, S. (2000) Chronic illness as biographical disruption or biographical disruption as chronic illness? Reflections on a core concept. Sociology of Health and Illness, 22 (1), 40-67. WILLIAMS, S. J. (2006) Medical sociology and the biological body: where are we now and where do we go from here? Health (London), 10 (1), 5-30. WINTERS, K. & NEALE, J. (1985) Mania and low self-esteem. Journal of Abnormal Psychology, 94 (3), 282-290. WISDOM, J. P. & GREEN, C. A. (2004) "Being in a Funk": Teens' Efforts to Understand Their Depressive Experiences. Qual Health Res, 14 (9), 1227-1238. WOLPERT, E. (1977) Manic-Depressive Illness: History of a Syndrome International Universities Press. YEN, C., CHEN, C., YANG, S., KO, C., YEN, J. & HUANG, C. (2007) Relationships between insight and psychosocial adjustment in patients with bipolar I disorder. Bipolar Disorders, 9 (7), 737-742. YNGVESSON, B. & MAHONEY, M. A. (2000) `As One Should, Ought and Wants to Be': Belonging and Authenticity in Identity Narratives. Theory Culture Society, 17 (6), 77-110. YOSHIDA, K. (1993) Reshaping of self: a pendular reconstruction of self and identity among adults with traumatic spinal cord injury. Sociology of Health & Illness, 15 (2), 217-245. ZWERLING, C., WHITTEN, P., SPINCE, N., DAVIS, C., WALLACE, R. & BLANCK, P. (2002) Workforce participation by persons with disabilities: the National Health INterview Survey Disability Supplement, 1995 to 1995. J Occup Environ Med, 44, 358-364.

Page | 275