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 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. 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