Experiencing Invisible Chronic Illnesses at Work and in the Clinic: “It’S Almost Like People Have to Physically See It.”

Experiencing Invisible Chronic Illnesses at Work and in the Clinic: “It’s almost like people have to physically see it.”

A dissertation submitted

To Kent State University in partial

fulfillment of the requirements for the

Degree of Doctor of Philosophy

Ginny L. Natale

Dissertation written by

Ginny L. Natale

B.A., Mount Vernon Nazarene University, 2012

B.S., Mount Vernon Nazarene University, 2012

M.A. Kent State University, 2014

Ph.D., Kent State University, 2019

Approved by

Dr. Clare L. Stacey , ,Co-Chair, Doctoral Dissertation Committee

Dr. Manacy Pai ,

Dr. Richard Adams ,Members, Doctoral Dissertation Committee

Dr. Juan Xi ,

Dr. Kelly Cichy ,

Accepted by

Dr. Richard Serpe ,Chair, Department of Sociology

Dr. James L. Blank , Dean, College of Arts and Sciences TABLE OF CONTENTS……………………………………………………..………………….iii

ACKNOWLEDGEMENTS……………………………..……………………………..………….v

I. INTRODUCTION…..…………………………………….……………………………1

II.. LITERATURE REVIEW………………………………………………………...…..13

III. METHODOLOGY…………………………………………………………………..26

IV. “IT KIND OF STOPS ME IN MY TRACKS SOMETIMES.”: BIOGRAPHICAL DISRUPTIONS AND PSYCHOLOGICAL DISTRESS………………………………..43

INTRODUCTION……………………………………………….………………43

REVIEW OF RELATED LITERATURE…………………………..…………...44

METHODOLOGY…………………………………...……...... ……………...51

RESULTS……………………………………………………..…………………52

DISCUSSION………………..……………………………………………….….75

REFERENCES………………..…………………………………………………86

V. “MY BODY IS NOT LYING TO ME”: GAINING LEGITIMACY IN PATIENT- PROVIDER INTERACTIONS………………………………………………………….92

INTRODUCTION……………………………………………….………………92

REVIEW OF RELATED LITERATURE…………………………..…………...93

METHODOLOGY…………………………………...……...... ……………...98

RESULTS……………………………………………………..…………………99

DISCUSSION………………..………………………………………………....118

REFERENCES………………..……………………………………………..…127

VI. STIGMA AND DISCLOSURE OF INVISIBLE DISABILITIES AT WORK……132

INTRODUCTION…………………………..…………………….……………132

REVIEW OF RELATED LITERATURE…………………………..………….132

iii

METHODOLOGY…………………………………...……...... ……...……..145

RESULTS……………………………………………………..……………….146

DISCUSSION………………..…………………………………………………170

REFERENCES………………..…………………………………………..……179

VII. DISCUSSION AND CONCLUSION………………….……………………….193

REFERENCES…………..……………………………………..………………226

APPENDICES A. List of Tables………………………………………………………………….258

iv ACKNOWLEDGEMENTS

I would also like to acknowledge the Graduate Student Senate of Kent State University for partially funding this research, and each of my committee members for offering feedback and encouragement from project development to defense. Manacy and Clare, many thanks for the hours spent helping to polish this project into something presentable and for that, I am very grateful. Finally, I thank the subjects whose participation made this study possible. Thank you for sharing a bit of your world with me. Giving spoons to you all.

CHAPTER 1. INTRODUCTION No, I need to have things planned out, need to have things figured out. Yeah, and I’m always concerned that, like, I’m going to… I don’t know how long people with this disease live on average. It looks like it’s not too much different than a regular healthy person. So I do think about [the future]. What am I going to be like when I’m 50? Am I going to be able to still be working? But I really try not to think about it too much, because it’s a little depressing. It’s a pessimistic little cloud that kind of sits over it. So, it’s like I’m so excited about this and this, or wait, I probably can’t even do that anyways because I’m going to be sick. That’s like a typical dialogue in my head … It’s like, Oh, I really want to go on this vacation. Ha Ha! That’s funny. You’re gonna be ill so don’t even bother spending the money … Because even right now, I’m going through some pretty bad symptoms … So, I haven’t eaten in four days. It’s hard and annoying. I have [blood sugar] problems because I don’t eat consistently [because of]… pain and nausea, yeah … Even if [I could get] a couple of consecutive hours of feeling incredible, that would suffice for a long time. Or just not being tired for 10 minutes. I know. I’m just getting miserable … At 25 years old, Andrea1 has experienced significant losses and setbacks directly

associated with her diagnosis of Crohn’s Disease (CD).2 She describes an uncertain future, health

constraints, and daily disruptions to the everyday workings of her life. In times of flare-ups,

when her CD is more severe and urgent, her illness causes immense pain, nausea, and fatigue, on

top of the urgent need to use the bathroom and the resulting bloody stools. Her illness also robs

her of restful sleep and worsens her depression and anxiety. She has tried to work with her

physician to control her disease, but changes to her medication have caused new problems and

worsened existing ones. Steroids make her feel “horrible,” and she’s “still worried” about the

1 All names presented here are fictional. Pseudonyms are used to protect participants’ privacy 2 Crohn’s Disease, a long-term gastrointestinal disorder characterized by flareups of intense pain and other symptoms, belongs to a group of conditions known as inflammatory bowel diseases (IBD). Crohn’s disease is a chronic inflammatory condition of the gastrointestinal tract.

1 side effects, which include unpredictable and uncontrollable moods swings and irritability. The steroids also impact her appetite; her days consist of “screaming at everybody and eating all the time.” Moving between periods of plateau and plummeting loss, Andrea has tried to negotiate the disruptions brought on by living with a chronic illness; these disturbances and losses mark her illness career.

Chronic illness leaves its imprint on an individual’s emotions, actions, and sense of self

(Charmaz, 1992). Andrea reflected on what had changed about herself as she dealt with two chronic illnesses. Cumulatively, the disruptions caused by CD were taking a toll on her sense of identity:

I think I just have become a lot more introverted, because I used to be like always out. I used to hike all the time when I was little. I was really energetic and bubbly. Then, as symptoms started coming up, I stopped going out more. I stopped doing the things that I like because I just didn’t feel comfortable anymore. So I’m definitely not the same person that I was beforehand … I don’t look sick usually. Besides bags under my eyes, I look okay on a normal basis, and I have two diseases in me that are like fighting each other every day. So it’s hard to be tolerant of people when they don’t understand. The challenges Andrea faces are not limited to the physical aspects of chronic illness. She described conflicting treatment plans and negotiating medication changes with gastroenterologists and rheumatologists. Further, she has struggled with the stigma of being unclean and smelling foul, symptoms related to her embarrassing gastrointestinal illness. As noted above, she felt that from her outward appearance, she appeared okay on a day-to-day basis, despite having multiple chronic illnesses warring inside her. She managed working full-time as a private music teacher specializing in brass instruments. Her schedule was flexible and allowed her to reschedule lessons or cancel entirely if health reasons required. At the time of her interview, it was a job that fit her needs, but she still worried whether she would be able to work

10 years down the road.

For Andrea, living with a serious, chronic illness has required a massive investment of time and effort just to maintain a certain minimal level health. It has also involved managing the imagined and actual stigmas specifically associated with CD. Frequent illness often means being subjected to probing questions, and sometimes, a diminished sense of self-worth (Charmaz,

1992). Andrea has planned her life around the demands of her illness. Her chosen work is low stress and flexible. Her social circle is small. She dependably relies on one or two close friends or family. By simplifying daily tasks and reordering her scheduled commitments, she is often able to delicately balance the demands of her health and social life. Nonetheless, others still expect her to keep up with mothering duties and professional obligations. Throughout her narrative, Andrea acknowledges that her chronic illnesses has shaped her roles as wife, mother, daughter, and teacher. They have also affected her view of the future; she expressed not wanting to think about her health because it added to her depression.

Statement of the Problem

After her diagnosis, Andrea was thrust into an alternative reality, one with its own set of rules and rhythms. Living with a chronic illness disrupted her previously smooth schedule and routines that up to that point had been taken for granted. At the time of our interview, Andrea had not been able to eat for four days because of intense pain and nausea. Her flareups forced her to pay attention only to the immediate need of caring for her body. Some of her concerns were far outside of normal adult worries. The disruptions she experienced immersed her in the world of chronic illness.

With advances in modern medicine, people are living longer – but not necessarily healthier – lives. Acute illnesses such as influenza are no longer the predominant cause of death in the United States and other post-industrial societies. Rather, many live with one or multiple

long-term conditions. Cancer, heart disease, type II diabetes, obesity, and arthritis are the costliest and most common causes of death in the US, according to the Centers for Disease

Control and Prevention (CDC, 2016). More Americans are living with chronic illness, often suffering social, emotional, and mental consequences, in addition to the physical burden of the disease. Even so, not all chronic illnesses receive media attention and research funding for the advancement of cures, nor do they necessarily garner positive support from the public, family, and friends. For those living with an invisible chronic illness, the burden of living with a disease may be unpredictable and, to others, invisible and unbelievable (Vickers, 2002).

Approximately one third of persons living with a chronic illness face basic problems

(e.g., financial, housing, or employment issues) and challenging social relationships with others in their day-to-day lives (van Houtum, Rijken, & Groenewegen, 2015). Not only does illness affect the individual, it also touches personal relationships, families, and career pathways.

Charmaz (1983) argued that people living with chronic illness may experience social loss and changes to their self-concept. Many sociologists have approached chronic illness as a disruptive force that compels patients to adjust to a wide variety of psychosocial and behavioral patterns in response to their particular disease trajectory. Illness is unexpected, and marks a “then and now divide between life before and after illness” (Bury, 1982, p. 169). Bury argued that chronic illness upsets the “structures of everyday life” (1982, p. 169), disrupting a person’s current biography and future self. With the potentially troublesome nature of chronic illness, it is important for sociologists to locate illness experiences within the daily context of the sufferer.

This includes taking into account the structural constraints of healthcare agencies and inflexible work environments.

Little is known about the illness experiences of people living with CD (Barber et al.,

2016; Bouguen et al., 2014; Jensen et al., 2015; Schwartz et al., 2002; Shreiner, Koa, & Young,

2015; Sommer et al., 2017; Ng et al., 2016). CD belongs to a group of conditions known as inflammatory bowel diseases (IBD). CD is a chronic inflammatory condition of the gastrointestinal tract. It is named after Dr. Burrill B. Crohn, who first described the disease in

1932. CD most commonly affects the end of the small bowel (i.e., the ileum) and the beginning of the colon, but it may affect any part of the gastrointestinal (GI) tract, ranging from the mouth to the anus. While symptoms vary from person to person, some may be more common than others. Symptoms of CD include one or more of the following: “persistent diarrhea, rectal bleeding, urgent need to move bowels, abdominal cramps and pain, and/or, constipation (can lead to bowel obstruction). Other general symptoms that may also be associated with IBD: fever, loss of appetite, weight loss, fatigue, night sweats, and loss of normal menstrual cycle”

(http://www.crohnscolitisfoundation.org).

CD may affect as many as 780,000 Americans (Kappelman et al., 2007). Men and women are equally likely to be affected, and while the disease can occur at any age, onset is more prevalent among adolescents and young adults between the ages of 15 and 35. The causes of CD are not well understood. Diet and stress may aggravate it, but they do not cause the disease on their own (see Bhatia & Tandon, 2005; Mawdsley & Rampton, 2005). Recent research has suggested that hereditary, genetic (Barrett, 2008; Cleynen et al., 2016), and/or environmental factors (e.g., Shivashankar et al., 2017) may contribute to the development of CD.

The disease tends to run in families (Cleynen et al., 2016). Studies have shown that 5% to 20% of affected individuals have a first-degree relative (i.e., parent, child, or sibling) with an IBD disease (http://www.crohnscolitisfoundation.org). CD is most prevalent among people of Eastern

European descent, including European Jews (Levine et al., 2016.) In recent years, an increasing number of cases have been reported among the African American population (Brant et al., 2017).

While there exists a body of literature on contested illnesses, no clear medical diagnosis has been given. There is far less research on invisible illnesses, such as work examining CD patients’ subjective experiences (Casati et al., 2000). When chronically ill individuals fail to convince physicians of the legitimacy of their experiences, they’re at risk of a reduced sense of self-esteem. Such delegitimation may “spoil” the person’s identity over time (Kleinman et al.,

1995). Gaining legitimacy entails, in part, providing proof of suffering through clinical signs and tests. People living with invisible and contested illnesses are therefore subject to devaluation and disapproval in both clinical and social settings (e.g., Barker, 2009; Ware, 1992; Kleinman, 1992).

Living with a chronic illness also impacts work experiences. Securing steady employment and, thus, healthcare coverage is crucial to managing disease. Since in the US insurance is usually obtained through full-time employment, staying employed is a primary concern for those living with serious medical issues. A large proportion of US workers manage one or more chronic illnesses, and yet this population is largely understudied (see McGonagle &

Hamblin, 2014). Chronic illness and disability also affect workers’ perceptions of their employment experience, as well as their long-term tenure in the labor force (Oldfield,

MacEachen, Kirsh, & MacNeill, 2016). How disabling illness transpires and whether the condition manifests itself in public or private define individuals’ day-to-day employment experiences. For those with invisible chronic ailments, controlling private health information and disclosure are crucial to job retention (Fowler, 2011). Yet disclosure of an invisible chronic disesase can be problematic, and stigmatized conditions put the sufferer at risk. Controlling disclosure and the stigma associated with invisible illnesses is vital to avoiding potential

discrimination and harassment (Fowler, 2011). A better understanding of workplace disclosure events is needed to facilitate continued labor force participation for employees living with such issues.

My research uses a life-course perspective to uniquely examine biographical disruptions across four adult milestones: schooling, career, marriage, and parenthood. These milestones capture the breadth of work-family transitions and are crucial in both adulthood and later life.

Most of the literature to date has tended to focus on a single transition or the personal biographical descriptions of the impact that chronic illness can have on marriage, parent-child relationships, and employer-employee connections. My work examines biographical disruptions across the greater course of life. Below, I take a close look at people’s experiences both at work and at the doctor’s office.

The incidence of chronic illness has been growing for the past 20 years (Ornstein et al.,

2013). Age increases one’s chance of developing one or more chronic conditions (McPhail,

2016). As more people develop chronic illnesses, there is a growing need to give voice to their experiences. The goal is that practitioners will better understand ways of holistically treating patients and addressing their social needs (e.g., employment, marital relationships). The unexpected losses experienced by people living with chronic illness transcend the illness experiences themselves. Feelings of loss, grief, and depression plague many of those dealing with unexpected disruptions to their everyday way of being.

Research Questions

From dealing with inequities in the medical system to simply getting through the day, living with a chronic illness results in complex problems and unforeseen disruptions. Chronic sickness sets people apart and takes over their lives. Yet some people continue to live with long-

term illnesses and manage to keep disease at the margins of their lives. They may struggle, though, and at times fail (Charmaz, 1992). In this dissertation, my first empirical paper (Chapter

4) examines the intersections among illness disruptions and four life-course milestones. This study begins with my first research question:

RQ1: How persons living with chronic illness manage their medical needs while pursuing

higher education, having a career, getting married, and becoming parents?

In my first empirical paper, I apply a life-course perspective to people’s experiences with CD provides insight into their behaviors as they navigate the constraints of their illness, family needs, household tasks, work disclosure, and physician interactions.

Second, I explore how people living with CD gain legitimacy over symptoms in patient- provider interactions. This prompted the research question:

RQ2: How do persons with chronic illness experience encounters with physicians, and

how do they make sense of it when such encounters are negative?

My second empirical paper (Chapter 5) takes a close look at individuals’ illness experiences at the doctor’s office. With the potentially disruptive nature of chronic disease, it is important to examine the larger social structure that contributes to disruption. Examples include the structural constraints of healthcare agencies and inflexible work environments. Establishing the legitimacy of suffering is important for many living with chronic illness, as will be described in the following chapters. When chronically ill individuals fail to convince physicians of the legitimacy of their symptoms, they often experience lower self-esteem. Delegitimation can “spoil” a person’s identity over time (Kleinman et al., 1995). In part, gaining legitimacy entails providing proof of suffering through clinical signs and tests. Those living with invisible and contested

illnesses are often subject to devaluation and disapproval in both clinical and social settings (e.g.,

Barker, 2009; Ware, 1992; Kleinman, 1992). Whether their symptoms were seen as credible by their physicians was a major concern for participants in the present study, and thus warranted further investigation as the interview process progressed.

Last, I examine the stigma of CD people feel and experience living with CD in my third empirical chapter. In my third empirical paper (Chapter 6), I use theories of stigma and disability to investigate how people choose to disclose at work. My third research question is:

RQ3: How do people living with CD choose to disclose their illness condition at work?

Living with a chronic illness frequently impacts work experiences. Securing steady employment and healthcare coverage is crucial to managing disease. Since in the US insurance is usually obtained through full-time employment, job security is a primary concern for those living with chronic disease. A large proportion of US workers manage one or more chronic illnesses, yet this population is largely understudied (see McGonagle & Hamblin, 2014). Chronic illness and disability also affect workers’ perceptions of their employment experiences, as well as their longer-term tenure in the labor force (Oldfield, MacEachen, Kirsh, & MacNeill, 2016). How disabling illnesses transpire and whether such conditions manifest in public or private can define day-to-day employment experiences. For workers with invisible chronic illnesses, controlling private health information and disclosure are crucial for job retention (Fowler, 2011). Yet disclosure can be problematic, and stigmatized conditions make it risky. Controlling disclosure and the stigma associated with invisible illness is vital to avoiding discrimination and harassment

(Fowler, 2011). A better understanding of disclosure events at work is needed to facilitate the continued labor force participation of employees living with chronic illness.

Organization of the dissertation

The following dissertation consists of a literature review (Chapter 2); methodology section (Chapter 3); three empirical papers that focus on different but related components of chronic illness, including: biographical disruptions across the course of life (Chapter 4), the stigmas and disclosure issues related to invisible illness in the workplace (Chapter 5); and providing legitimacy to claims of suffering in clinical encounters (Chapter 6); ending with a discussion of my findings and their implications (Chapter 7).

Paper 1: “It kind of stops me in my tracks sometimes”: Biographical Disruptions and

Psychological Distress

In this chapter, I explore how people living with CD view their chronic illness within particular contexts, noting how their illness experiences are intertwined with stress and their mental health. Drawing on interviews with people living with CD, I argue that the many repeated disruptions across an individual’s life course significantly contribute to the patient’s self- reporting of psychological distress, including issues of anxiety, depression, grief, and feeling left behind. Some of the literature has suggested that due to the recurrent nature of chronic illness, most cope by normalizing the illness and its effects (Faircloth et al., 2004; Williams, 2000).

However, I argue that coping and achieving a sense of stability or coherence may be difficult, as repeat disruptions often lead to ongoing distress. This stress may impact many areas of the patient’s social life, such as their family, marriage, schooling, and career. I provide evidence and support for this biographical disruption, even when participants seemed generally to have adjusted to living with their disease. I draw on the theoretical concept of the stress process and the life-course perspective to frame my discussion of the findings. Finally, I conclude with a call for further study of the mental health conditions of those living with CD.

Paper 2: “My body is not lying to me”: Gaining Legitimacy in Patient-Provider Interactions

This chapter explores how people living with CD experience delegitimation during their interactions with physicians. The narratives demonstrate that following such delegitimizing encounters, many participants questioned the validity of their symptoms and, thus, their sanity.

Ultimately, participants used knowledge of their bodies to justify their suffering and refute the notion that they were “crazy.” The “wise body” is a source of truth when medicine fails to provide patients with concrete solutions to their ailments. I discuss the social structures in medicine that contribute to the devaluation of persons living with invisible illnesses. Further, I consider the eroding trust between physicians and patients in modern medicine, where many chronic illnesses have no cure. This study contributes to the literature of medical sociology by underscoring the contested nature of CD. These findings add to the current research on patients’ key concerns of being believed and taken seriously that often are associated with chronic illness, and specifically with CD. Delegitimation can serve as a barrier to seeking future healthcare, but improving physician training will improve communication between doctors and their patients.

Paper 3: “But then, like, do you go into that subject as well?”: Workplace Stigma and

Disclosure of Invisible Disabilities

In this chapter, I discuss the workplace disclosure of invisible chronic illnesses, including aspects of stigma and potential discrimination and harassment. For those living with chronic diseases such as CD, disclosure may be a strategy for self-managing the associated stigma. My findings contradict current conceptualizations of shame as the driving force behind choosing to disclose. Although previous research has found that people living with chronic disease tend not disclose their health status at work, I find evidence that the chronically ill do disclose, and their motivation to do so extends beyond the need for accommodations or medical leave. This

discussion is framed by Goffman’s theory of stigma (1959). The results show that participants were most likely motivated to disclose by implementing values related to education and social change, honesty, and empowerment. I argue that these values are a method of attaching meaning to their illness by connecting their individual experiences to larger social norms about disease and disability in the workplace. Disclosure is one way that people living with chronic illness can be “seen,” and a method for combating the stigma that exists when work and sickness intersect.

Chapter summary

In the chapters that follow, I offer a detailed explanation of the research methods utilized to collect the data, and present each of the three empirical papers introduced above. As a work of sociology, this dissertation provides two different levels of interpretation. The first comes from participants’ narratives provided as they reflected on their experiences. The second is from a sociologist who studied, analyzed, synthesized, framed, and interpreted these experiences. I provide statements from people living with CD in order to illuminate their lived experiences, upon which my analysis rests. I have attempted through this work to weave together a sociological narrative and, to some extent, enter their world of chronic illness to tell survivors’ stories.

CHAPTER 2.

LITERATURE REVIEW

In the past 60 years, the majority of developed and developing nations have undergone a epidemiological transition (see Askan & Chakraborty, 2014; Omran, 1971). The decline in mortality from acute diseases across all ages has extended the average life expectancy; most men and women can now live well into old age. Along with increased longevity, however, comes greater morbidity rates resulting from chronic conditions. A chronic illness is a condition that lasts a year or more, requires ongoing medical attention, and impacts daily activities (e.g., yardwork, cleaning, laundry, etc.) Sociological inquiry into chronic illness has emanated in part from the limitations of medical treatments and a lack of available cures for long-term ailments

(Gabe & Monaghan, 2013). The diagnosis of a chronic illness can serve as a turning point, resulting in the individual making radical adjustments to their social, emotional, physical, and possibly vocational selves (Millen & Walker, 2000). The initial impact of a diagnosis can result in denial, shock, feelings of loss and grief, anxiety, and depression. Individuals suffering from chronic illnesses must adjust to the stress of treatment, symptoms of the disease, financial burden of medical care, changes in family structure, and feelings of vulnerability and loss of control

(Millen & Walker, 2000; Linveh & Antonak, 2005). While people with chronic diseases desire to live without the constraints of constant medical assistance or care, sometimes these limitations are unavoidable and the individual is forced to adapt to a different way of life (Gregory, 2005).

My dissertation broadly examines the impacts of chronic illness on multiple transitions that occur throughout the life course. I study how experiencing the chronic illness of Crohn’s

Disease (CD) impacts educational and career trajectories, and requires a reexamination of key role transitions such as to spouse and parent. To my knowledge, previous studies relating to the impacts of chronic illness on life experiences have focused on a single transition at a time. For example, research on the experiences of people living with CD or Irritable Bowel Disease (IBD) have focused on a sole transition period, such as attaining a particular educational milestone

(e.g., Ganz et al., 2016) or school experience (e.g., Cotton, 2017; Fuchs, 2018). I address this gap in the literature by providing a unique examination of the impacts of CD on four life-course milestones: education, career, parenthood, and marriage.

In this chapter, I first discuss the life course perspective and its core components. I then describe the relevant literature on chronic illness as a biographical disruption. Next, I analyze how these disruptions, as viewed through the Stress Process Model, help to explain the greater impact of biographical disruptions on mental health. Then, I elaborate upon people’s search for legitimacy when experiencing invisible chronic illnesses such as CD. I end this literature review with a consideration of the stigma associated with invisible chronic illnesses, description of the gaps in the literature, and a chapter summary.

Life Course Perspective

The life course perspective is a multidisciplinary framework for the study of individual lives and structural contexts. It highlights the relationship between an individual and the sociohistorical context within which they live. A life course is defined as "a sequence of socially defined events and roles that the individual enacts over time" (Giele & Elder, 1998, p. 22).

Together, these events and social roles constitute the sum total of a person’s lived experience. As

such, an in-depth narrative analysis functions well with the life course perspective in an examination of the lives of those living with chronic illness. The life course perspective has the advantage of focusing on trajectories across many time points, the collective effects of which may be cumulative. Aging and developmental change are continuous processes experienced throughout a lifespan. As such, the life course reflects the intersection of social and historical factors with personal biography and development, within which the study of social change can ensue (Elder, 1985).

Key Principles and Concepts

My research focuses on several key concepts of the life course perspective (Elder, 1995), including the time of life, trajectories and transitions, and turning points. The time of life, such as childhood or old age, influences social position and personal roles and expectations (Bengtson,

Elder, & Putney, 2012). For example, the time of life at which an illness strikes is critical, since it interrupts the individual’s ability to fulfill the roles most meaningful at that time. If a critical illness occurs in childhood, it may shape educational experiences and future work opportunities, depending on how much loss the person experiences (e.g., Shiu, 2001). Taking a life course approach to the study of chronic illness provides a framework for studying the interactions among the social structures of healthcare and individuals’ particular behaviors (Ralph & Brindis,

2010). Within these social structures, people living with chronic illness live out trajectories, sequences of states within a defined range of experiences. Common examples include educational (Dumas, 2014) and career trajectories. Sociologists also consider the importance of illness careers, defined sets of experiences associated with long-term illness (e.g., Grue, 2016;

Pescosolido, 2014; Rossen et al., 2017). Trajectories are long-term pathways with patterns of development that exist within major social institutions such as healthcare or the family.

Within these trajectories are transitions where discrete life changes are located (e.g., changing from being single to married, becoming a parent, etc.). Change within a particular trajectory can include multiple transitions. For instance, changes to a person’s illness career can include multiple disruptions or transitions over time. The timing of theses transitions is important, since experiencing a chronic illness may intersect with a person’s career or educational trajectory (Elder, 1995). Similarly, a chronic illness may impact the timing of certain role transitions, such as when changing from being single to married. As such, the diagnosis of a chronic illness serves as a turning point (Hydén, 2018), forcing the individual to make adjustments to their social, emotional, physical, and possibly even their vocational selves (Millen

& Walker, 2000). Conceptually, this implies that certain illnesses can literally change the direction of a life course (see Gregory, 2005; Nagin, Pagani, Tremblay, & Vitaro, 2003; Ronka,

Oravala, & Pulkkinen, 2003).

The initial impact of being diagnosed with a chronic illness can result in denial, shock, feelings of loss and grief, anxiety, and depression. Sufferers must adjust to the stress of treatment, symptoms of the disease, financial burden of healthcare, changes in family structure, and feelings of vulnerability and loss of control (Millen & Walker, 2000; Linveh & Antonak,

2005). While people with chronic disease desire to live without the constraints of constant medical assistance or care, sometimes such limitations are unavoidable and they are forced to adapt to a different way of life (Gregory, 2005).

Chronic Illness as Disruption

Living with a serious, long-term illness can launch people into a separate reality, one with its own rules. Changes in health status mean moving between two very different worlds (Sontag,

1988): sickness and health. When there is ongoing illness or only partial recovery, as is the case

with chronic conditions, people are forced to adapt or modify previous ways of being and their life roles in order to accommodate their health needs, as well as their own and society’s expectations. Illness experiences involve the body, social relationships, and the patient’s self- concept (Charmaz, 1993) and behavior (Cockerman, 2017).

Chronic illness is an experience that disrupts the very underpinnings of the knowledge and structures of everyday life (Bury, 1982). As argued by Giddens (1979), experiencing a chronic illness is a critical situation. First, there are disruptions to taken-for-granted assumptions of one’s social life and a breaching of normative boundaries. These disruptions can be so profound that they force a fundamental rethinking of a person’s biography and self-concept (for more detailed information on these changes to the self, see Charmaz, 1993) (Bury, 1982, p. 170).

Fennell (2003) outlined four phases to the experiencing of a chronic illness. In a time of crisis, one must deal with the immediate trauma and changes in health status. Stabilization is the next stage, when the patient becomes more settled and reconstructs necessary patterns and behaviors.

Resolution is when the individual develops a new sense of self and meaning in life. Finally, integration occurs when the sufferer forms new social relationships, engages in a new career, or establishes a new spiritual framework. This process repeats with each disruption.

The emergence of a chronic sickness drives patients and those near them to seek knowledge about what is occurring. Such questions may raise doubts about the conventional explanations of disease, including pictures, analogies, and metaphors (Frankenberg, 1986). This quest for meaning – Why me? Why now? – is what drives investigations into chronic illness; it is key to understanding the illness experience. The outcomes of ailments on the self and personal character, the resulting loss of self and control, and the biographical disruptions’ effects on personality are all individual narratives that should be explored. My investigation into illness

narratives does not bar references to medical professionals. Indeed, illness narratives may well intersect with physicians’ experiences. For example, in Bransen’s (1992) work on women’s stories about their bodies, “me,” the “specialist,” and “nature” were key figures of illness narratives. With each disruption from chronic diseases such as CD, there may be a physical loss, but also a chance to better know the self (Charmaz, 1993).

When disruptions and loss occur, the chronically ill lose life coherence, a quality often taken for granted until tragedy strikes. As Charmaz (1993) aptly noted, experiencing illness poses three key problems. The sufferer must find a way to: 1) reconstruct order, 2) make sense of their new or intrusive symptoms, and 3) maintain control over their life (see also Kleinman,

1988). Maintaining control involves defining the illness, making sense of the symptoms, and reordering their way of living such that the illness can be managed. Maintaining control also means regaining continuity through concrete daily actions that lend a sense of coherence to their sense of self and the world.

Many people living with hidden physical disabilities are still able to actively engage in hobbies, work, and sports. However, others struggle just to get through the day, and cannot work at all. “Invisible illness” is an umbrella term for any medical ailment not easily visible to others.

This includes chronic physical conditions such as arthritis, diabetes, fibromyalgia, and others, but also mental illnesses such as anxiety and depression. When we see a person in a wheelchair, with a hearing aid, or walking with the help of a white cane, we recognize that person as disabled. But what signals to others that someone is living with an invisible illness, one that might make even the tasks of daily living difficult? Invisible illnesses can include chronic ailments such as cardiovascular disease, diabetes, asthma, stroke, cancer, and sleep disorders, if the sickness significantly impairs the normal activities of daily life.

Living with an invisible illness often leads to judgement and criticism because onlookers assume that someone who looks well on the outside is healthy on the inside, and therefore must be lying about their suffering (Ware, 1992). Gaining legitimacy entails providing proof of suffering through outward symptoms, clinical signs, and tests. Individuals living with invisible and contested illnesses, therefore, are subject to devaluation and disapproval in both clinical and social settings (e.g., Barker, 2009; Kleinman, 1992). For many years, fibromyalgia was considered a contested illness, as there were no clear patterns of symptoms or proof of biophysical dysfunction. Other examples include Gulf War Syndrome and chronic fatigue. Both chronic fatigue and fibromyalgia have no clear physical manifestations, causes, or treatment approaches, and therefore sufferers’ illness experiences are often delegitimized (Banks & Prior,

2001; Barker, 2009; Dickson, Knussen, & Flowers, 2007; Sim & Madden, 2008; Ware, 1992).

The Impact of Chronic Illness on Mental Health

Past literature has revealed a range of negative outcomes for those suffering from contested illnesses, including fighting for legitimacy and access to healthcare (Banks & Prior,

2001; Dumit, 2006; Raheim & Haland, 2006; Shriver & Waskul, 2006; Ware, 1992; Werner &

Malterud, 2003). Participants struggling with chronic pain and fibromyalgia have reported forming precarious relationships with their “treacherous” bodies (Raheim & Haland, 2006). For such individuals, it is difficult to achieve a medical diagnosis and social recognition of their suffering (Werner & Malterund, 2003). Some even have a history of being denied healthcare, due to a lack of empirical evidence (Dumit, 2006); they’ve been accused of faking their ailments

(Clarke & James, 2003; Kleinman, 1995; Ware, 1992). Shriver and Waskul’s (2006) study showed that veterans suffering from Gulf War Syndrome experienced stigma and threats to their

credibility, in addition to various assaults on their social status as veterans, questions regarding their emotional stability, and dangers to their social relationships and general selfhood.

Few studies have focused on the actions participant take following such experiences.

However, research has shown that persons living with chronic illness experience significant feelings of grief and loss, reoccurring at various times throughout their lives (Anderson &

Brackett, 2005). They’ve also reported persistent social isolation (Kvaal, Halding, & Kvigne,

2014), hopelessness, helplessness, guilt (Alderson, Glidewell, & House, 2014), frustration, fear

(Tiwari, 2015), a sense of ineffectiveness, feeling as if their chronic illness rules their lives and defines them as individuals (Walters, 2017), and struggles with balancing the demands of their illness with the requirements of their daily lives (Jeon et al., 2010). It is common for people to experience comorbidity with physical and mental illnesses. Depression, for example, is estimated to impact up to 60% of stroke survivors, 45% of those suffering from heart disease, and 30% of individuals living with cancer and diabetes, as compared to the general population (Voinov et al.,

2013).

The same factors that increase the risk of depression in otherwise healthy people also raise the risk in those with other medical illnesses (NIMH, 2017). It is common to feel sad or discouraged after a heart attack, cancer diagnosis, or when managing chronic pain. People may face new limits on what they can do, and feel anxious about treatment outcomes and the future. It may be difficult to adapt to repeat disruptions and cope with the changes and ongoing treatment that come with the course of the disease. Furthermore, favorite activities like hiking and gardening may be harder to do, or even impossible. Sometimes, symptoms of depression may follow a recent medical diagnosis but shift as people adjust. In other cases, certain medications used to treat the illness may trigger depression (NIMH, 2017). Depression may persist, even

when physical health improves (NIMH, 2017). Research has suggested that people with depression and other medical illnesses tend to have more severe symptoms of both. Those with depression may find it even more difficult to adapt to co-occurring illnesses and ever-rising medical costs than those who do not suffer from the disease.

Crohn’s Disease belongs under the umbrella of irritable bowel diseases (IBD), which also includes ulcerative colitis. While the diseases are different in treatment, symptoms and pathology, both CD and UC affect the GI tract. People living with IBD often experience mental health distress. Indeed, studies have indicated that individuals with ongoing symptoms attributed to active IBD very often also suffer from mental health issues (Knowles, Andrews, & Porter,

2018). IBD is a chronic condition associated with a variety of debilitating symptoms, in addition to the stress that accompanies an uncertain prognosis. Hence, the increased incidence of psychiatric disorders emerging after an IBD diagnosis is of little surprise (Bernstein, 2018).

Psychiatric diseases pose unique challenges for persons with IBD, especially since there has been little research exploring the treatment of these types of conditions in such individuals (Feist et al., 2016).

Stigma

When considering issues of legitimacy with regards to the confirmation of symptoms and disease, it is important to consider the stigmatization of people living with invisible chronic illnesses. Many chronic disorders also carry with them this potential. Those living with chronic illness may be considered unclean (Grzybowski, 2016), weak-willed (Khan et al., 2018), contagious (Alpsoy et al., 2017), self-inflictors (Eldridge, 2013; Chapple, Ziebland, &

McPherson, 2004), or immoral (The Well Project, 2016). Having a chronic illness and thus being considered different from the general population subjects a person to possible stigmatization by

the “normals” (Goffman, 1963). This stigmatization leads individuals to conceal their identities in an attempt to fit in with those considered to be normal. In this way, stigma serves as a barrier to seeking help and gaining legitimacy, both socially and clinically. Having an invisible illness marks one as discreditable (Goffman, 1963), whereby the stigma is unknown or concealable. In contrast, those living with a visible impairment or illness are known as the discredited. Their stigma is clearly visible; it marks them as abnormal. A person who has been stigmatized may work to conceal their identity through passing as normal in order to avoid discrimination and harassment. For those living with an invisible chronic illness, controlling information through disclosure is one way of managing or even preventing stigmatization.

Goffman (1963) described three types of stigmas: physical deformities, character blemishes (e.g., a weak will, dishonesty, addiction, mental illness), and tribal stigmas. Tribal stigmas are applied to members of a stigmatized group, such as because of religion or race. Some illnesses, such as HIV/AIDS, have in the past carried all three stigmas: wasting syndrome (i.e., physical deformity), perceptions of addiction (i.e., character blemish), and belonging to the

LGBTQ+ community (i.e., tribal stigma). While invisible chronic illnesses may not always garner stigmatization from others, “the stigmatized individual may be able to hide the discrediting attribute from others but cannot do so from him or herself” (Goffman, 1967). In this way, stigma may be felt or enacted. Enacted stigma and discrimination is overt, directly unfavorable treatment of a stigmatized individual. Enacted stigma may also take the form of indirect discrimination through structural policies, rules, and systems that unfairly discriminate against those with a stigmatized characteristic. Consequences may include the loss of employment, denial of opportunities, abuse and violence, compulsory testing or quarantine, and denial of health services (Martino, 2017). Felt stigma is the internalized or emotional impact of

stigmatization. It manifests in individual feelings of shame, guilt, depression, and social withdrawal from activities. Again, the visibility of a condition plays a vital role in the degree to which onlookers accept or reject chronic illness and disability in society.

More recently, scholars have been expanding the conceptualization of stigma beyond social disqualification. Link and Phelan (2001) explain that stigma is often complex and comprised of co-occurring aspects of labeling, stereotyping, status loss, and discrimination.

Jones and colleagues (1984) identified six dimensions of stigma: concealability, disease course, interpersonal strain, aesthetics, disease cause or communicability, and peril. Concealability refers to the visible or hidden nature of a given illness. The disease course is how the illness changes or progresses over time. For example, progressive diseases such as Parkinson’s and multiple sclerosis begin with mild symptoms and evolve to more visible and disabling indicators that can necessitate a wheelchair, a visible sign of impairment. Stigma can cause interpersonal strain on relationships. For example, one may experience such a strain from the intrusiveness of symptoms that cause ill individuals to cancel their plans due to fatigue, avoid family gatherings, and/or abstain from sexual activity. The aesthetic qualities of an ailment involve the extent to which an illness impacts one’s appearance. This is closely related to the visibility of the disease, yet is a distinct issue. For example, individuals with cancer who undergo chemotherapy are likely to experience changes in their appearance, such as pale and dry skin, hair loss, and a thin or wasted frame; these can serve to stigmatize the individual. Another stigmatizing aspect of illness is how it is contracted. The disease cause refers to whether the illness is congenital or acquired through environmental, viral, or bacterial roots. The cause is important because healthy individuals want to ensure that they do not contract the stigmatized illness. This leads to separation from those who have illnesses that society deems communicable. Finally, peril involves the dangers

associated with a stigmatized person. Examples include those who have mental illnesses such as bipolar disorder, personality disorders, and schizophrenia. Jones et al. (1984) showed that

“normals” engage in discriminatory acts towards the ill when they act on a belief that the stigmatized are not fully human (Goffman, 1963). As such, they rationalize their behavior, convincing themselves that the stigmatized are dangerous or inferior, describing them as

“morons” or “cripples” (Joachim & Acorn, 2000; Jones et al., 1984) to reinforce a sense of able- bodied superiority.

Gaps in the Literature

As mentioned above, this research addresses important gaps in the literature, beginning with examining four life course milestones in a single study. From an examination of these milestones (i.e., schooling, career, marriage, and parenthood) emerges themes important to those living with CD, including biographical disruptions and concerns regarding mental health and stigmatization. I ask how people living with CD experience illness disruptions, if they change across a life course, and what impacts they have on people’s perceived mental health. Some researchers have explored the impacts of chronic illness as a biographical disruption (e.g.,

Abspring, 2001; Asbo et al., 2016; Wilson, 2007; Wouters & DeWet, 2016), but there has been little work done on the impact of such disruptions on mental health. In this research, I address the biographical disruptions experienced across the life course of those suffering from CD, and also elaborate upon their perceptions of how such disruptions affect their mental health. In so doing, I paint a picture not only of the acute disruptions to everyday life these people experience, but also describe the more long-lasting effects they may have on mental health. My research also analyzes how people living with invisible chronic illness prove their suffering to physicians who tend to disregard their accounts. I show how they struggle to establish legitimacy, taking a

narrative approach to describing patients’ interactions with their physicians and examining the impact of having their symptoms dismissed and devalued. Finally, this study explores the stigmatization of invisible chronic illnesses in terms of workplace disclosure. My research adds to discussions of people’s reasons for disclosure, beyond asking for work accommodations.

Scholars have argued that disclosing a diagnosis may lead to discrimination and/or harassment.

The narratives included here reveal the stigma sufferers feel, and their reasons for disclosing CD to employers and colleagues. This dissertation answers the call for more research recognizing the positive actions of people living with chronic illness, and provides a greater exploration of the problems they face (see Bury, 1991).

Chapter Summary

In sum, chronic illness is a potentially disruptive power that upsets what we know about illness and the familiar patterns of life. Frequent flare-ups with varying levels of severity force people living with CD to adapt and frequently readjust to new ways of being. As such, problems with uncertainty about the future and the prognosis of the disease can arise. Managing a chronic illness can be difficult in itself; however, many may also experience poor mental health, anxiety, and/or depression. Struggling to prove the legitimacy of an illness for those suffering from invisible chronic diseases is compounded by cumulative disruptions and losses resulting from the disease trajectory. With the potentially disruptive nature of this type of health issue, it is important for sociologists to place patients’ illness experiences within the specific daily context that they live, and understand the structural constraints of healthcare agencies and inflexible work environments.

The next chapter documents the research methodology of this dissertation. I begin with a rationale for its qualitative design, and then describe the research sample and provide an

overview of the research process. I then discuss the data collection and analysis, as well as my positionality as a researcher. Finally, I consider the trustworthiness of the data and a few research limitations.

CHAPTER 3. METHODOLOGY

Introduction

This study began as an investigation of how persons living with chronic illness cope with the resulting constraints, while still attempting to pursue adult milestones such as having a career, getting married, and becoming a parent. The present study centers on how chronic illness extends into patients’ public and personal lives. By understanding how persons handle the demands of their disease, it is possible to better target interventions that will help them cope more effectively, reduce their stress, and produce better overall health. Furthermore, a more thorough understanding of this process will aid physicians in their treatment of the chronically ill, allowing doctors to learn about aspects of their patients’ lives that impact their psychosocial wellbeing, and determine how these aspects might influence the disruptive illness experience.

This chapter documents my research methodology, including: (a) the rationale supporting a qualitative research design, (b) description of the research sample, (c) overview of the research design, (d) method of data collection, (e) data analysis and synthesis, (f) issues of trustworthiness, and (g) study limitations. The final section of this chapter includes a brief summary of the preceding sections.

Rationale for a Qualitative Design

This qualitative research has yielded rich, contextual data that offer insights into the lived experiences of individuals suffering from chronic illness. Taking an inductive approach allowed

me to respond to the data and change interview materials as the data suggested. This methodology produced a fruitful and comprehensive picture of the subjects’ illness experiences and their impacts on individuals’ respective life courses. A qualitative methodology allows researchers to step into their participants’ lives and gather a holistic, rather than reductionist, understanding of the illness experience (Bogdan & Biklen, 2007; Locke et al., 2000; Maxwell,

2012; Merriam, 1998, 2009; Patton, 1990; Schram, 2003). Generally, qualitative approaches to research extract and interpret the meaning of experiences (Denzin & Lincoln, 2013) such as infertility due to illness complications. Purely employing quantitative methods (e.g., survey data) would not have extracted data of the quality and depth necessary to answer my proposed research question. In-depth interviews provided both a contextual background for my work, and a point of meaning-making for participants asked to relate their stories of health and illness. In qualitative research, an emphasis is placed on the information-rich nature of individuals and their particular contextual factors. My intent was to describe the context within which persons with

CD navigate through their illness constraints as they proceed along their life course. A focused understanding of these illness experiences could not be obtained through random sampling. My research intent was inductive and placed an emphasis on participants sharing their experiences and narratives about how illness impacted them within the context of their daily life experiences.

Research Sample

I used a purposeful sampling strategy to select the study sample, selecting only those living with Crohn’s disease (CD) and within a certain age range. Both snowball and criterion sampling were used to access the CD patient population; the disease affects only 1% of the

American population. Snowball sampling involved using people who were already a part of my social network and who also had CD to recruit other people they knew who also were living with

the disease. Criterion sampling was the primary method used to recruit individuals with CD, via three different support groups who meet on a popular social media platform. In order to be eligible to participate in the research, individuals had to meet diagnosis, age, and geographical location criteria. Even though these criteria were part of the recruitment post, some individuals expressed points of disagreement. I was not expecting this. The most common objection was older individuals wanting to be a part of the study, as voices of the first generation to live with

CD. However, most were retired or at an age where work-family transitions were far behind them, and their stories would not have provided the information necessary to answer my research question about changes to one’s life course. Prospective participants with other forms of irritable bowel syndrome (IBS) and colitis also wanted to participate, arguing that the disease pathology was so similar that it had similar impacts on life goals and decision-making. While they made excellent arguments, for the purposes of this study, CD and ulcerative colitis were treated as two separate entities. I focused solely on the impacts of CD on adult milestones.

For my research, I conducted 35 in-depth interviews with persons with CD who were living in the United States. All participants were between the ages of 23 and 54. CD is an inflammatory bowel disease characterized by inflammation of the digestive tract. It may lead to severe abdominal pain, fatigue, weight loss, and malnutrition. It is an episodic chronic illness, meaning that remission of symptoms is possible. While the condition is not inherently fatal, patients must follow a prescribed diet and lifelong medication regimen, and thus are subjected to ongoing medical supervision. CD is genetically inherited, but onset can happen at any point in life. Age, environment, and diet can all help to trigger the emergence of active phases of the illness. Young adults and adolescents between 15 and 35 years of age are the most likely to develop the disease, with a small wave of persons being diagnosed after reaching age 50

(Nimmons & Limdi, 2016). Thus, my study focused on adults experiencing life-course transitions such as parenthood or career changes, moments that can easily be disrupted and modified in response to illness-based constraints. Although all participants were diagnosed with

CD, there were differences among them in terms of age, work status, marital status, education level, religious preference, and number of children. The following sample description indicates the rate of remission and number of surgeries per participant.

Table 1 (Appendix A) shows the demographic breakdown of the sample. Participants ranged between 23 and 50 years of age, with an average age of 38. Most (56%) worked full-time jobs at various levels of occupational prestige. Two worked full-time jobs from home in order to better accommodate their needs. More stayed at home or were on disability than were working part-time. Six were on formal disability due to complications resulting from their illness. The relatively large number of persons on disability for their CD was surprising to me, as the median age was relatively young (i.e., 38 years old). Participants’ marital status varied, with 53% married or remarried. I interviewed eight singles with CD and six who were divorced. With the exception of one negative case, all other divorced and remarried (n = 10) participants reported that the burden of CD contributed to the dissolution of their marriage. Surprisingly, an overwhelming 73% of interviewees held a bachelor’s or graduate/professional degree, with six participants having completed some college or an associate’s degree at the time of their interview. Of the eight individuals without a four-year degree or higher, six were currently attending school and working towards bachelor’s degrees. Of the 10 with advanced degrees, two were forced to leave graduate school during their doctoral programs due to the stress of graduate school leading to complications with their illness. Of the 33 people interviewed, 53% had either no religious preference, were “spiritual” rather than religious, or had been raised in a religious

tradition that they no longer practiced. Most of the remaining participants were either Protestant

(33%) or Catholic (13%). Two were from an Ashkenazi Jewish heritage; they remarked that they still believed in the religious tenants of their faith, but did not identify as religious. Interestingly, there was one participant, Farrah (aged 34), who described her religion as “AA.” She had found spiritual comfort in the 12-step process, expressing that it helped her cope with the mental health effects of CD and assisted her in accepting that her physical limitations were not a weakness.

Also of note was the number of respondents who turned away from their faith in response to the personal and public burdens of CD. One young man, Mazan (aged 23), rejected his Islamic faith during the first tumultuous years surrounding his diagnosis.

One of the most important pieces of demographic information listed in Table 1 is the gender breakdown of the sample. The study’s sample was largely comprised of women, with 25 female and five male respondents. Additionally, the racial breakdown of respondents was largely white; only 6% were from non-white or other ethnic backgrounds. While recruiting for this study, I made every effort to reach out to as many male participants and minorities with CD as possible. The disproportionate number of female participants reflects a larger gendered distribution of those with IBD. Women are more likely to be diagnosed with CD, while men are more often diagnosed with ulcerative colitis (Brant & Nguyen, 2008). Concerning race, despite being found in all racial groups worldwide, CD has historically had the highest prevalence in predominately white populations in North America and Europe, with significantly lower rates of diagnosis for ethnic minorities within these regions and in other countries (Karlinger, Györke,

Makö, Mester, & Tarján, 2000; Loftus, 2004; Silverberg et al., 2005; Straus, Eisen, Sandler,

Murray, & Sessions, 2000). As such, much of what we know about the disease and its symptoms has emerged from a Western understanding of clinical indications and physical limitations. Thus,

the medical literature on African Americans, Asians, and Latinos living with CD is lacking

(Loftus, 2004; Vind et al., 2006). Yet recent studies have shown that CD presents more severely in African American and Asian populations, as compared to their white counterparts (Thia,

Luman, & Jin, 2006). These findings are limited by disease severity and small sample sizes, but provide evidence of the need for continued investigation of the intrusiveness experienced by different racial groups living with CD.

Table 2 (Appendix B) details the remission statuses of participants. Because this study takes into account the contextual factors surrounding participants’ decision-making, it is important to also consider respondents’ remission histories and current statuses, as well as the types and number of surgeries that participants have undergone when attempting to counter the intrusiveness and severity of CD. Remission status was difficult to capture, in part due to the ambiguous nature of CD remission and how it is measured. Herein lies the value of qualitative work for answering questions such as: “Are you in remission?” At the time of the interviews,

47% of participants said they were in remission, albeit all 14 were not symptom or pain free. At least six said they had achieved remission in the past, while four were unsure what remission might look like for CD patients. Finally, 20% of the sample was not in remission and had signs of being in an active phase of CD. Patients’ lengths of remission varied from two months to several years, depending on the type of remission they described. All in all, remission is not a one-size-fits-all operation. The second piece of demographic information illustrated in Table 2 is the number of surgeries participants had had prior to the date of their interview. An overwhelming 73% of interviewees had had surgeries directly related to CD. Eight had not had surgery because of their illness, while others had multiple surgeries and ostomy revisions. Table

2 shows the raw count for the number of surgeries experienced by 22 participants. Table 3

(Appendix C) shows the participants’ work, occupation, education, and disability statuses. All names have been changed for confidentiality.

Overview of the Research Design

Prior to data collection, I reviewed a select collection of studies in the areas of medical sociology, families, and the life course. Following the proposal, I obtained IRB approval.

Approval covered issues regarding participant recruitment, consent, and protection of participant information. Research participants responded to a recruitment post on social media. If interested in participating, respondents contacted the researcher through email, telephone, and/or social media. In-depth interviews were conducted with 35 persons living with CD, aged 23 to 54 years and living in the United States. Telephone interviews lasted about an hour. Each interview was recorded digitally using two devices, a digital tape recorder and the calling service NoNotes.

After all interviews were completed, I held a raffle for two $50 Wal-Mart gift cards. Audio files were sent to a transcriptionist before being imported into Nvivo 11 for coding and analysis.

Literature Review

Prior to data collection, a preliminary literature review was conducted to inform the study. Two works were discussed during the research proposal, addressing the debate over the extent to which an illness contributes to biographical disruption (Bury, 1982; Larsson &

Grassman, 2012), and the normalizing over time of life interruptions stemming from medical needs (Williams, 2000). Next, I considered the relevant tenants of the Life Course Perspective and how they might inform an understanding of how chronic illness impacts the transitions and trajectories in one’s biography. The purpose of the initial literature review was to gain a better understanding of the challenges those living with chronic medical conditions face as they approach adult milestones. The literature review was ongoing as data collection and analysis

progressed. As new themes or relationships emerged from the data, I regularly referred back to the existing literature and refined my literature review.

IRB Approval

Following the initial literature review, ethical approval (IRB #16-344) was obtained in

August of 2016, including a minor expansion of recruitment sites approved at the end of October

2016. Prior to data collection, I successfully defended the proposal for the current project, which included the research question, statement of problem, and necessary background information outlined in Chapter 1; the literature review described in Chapter 2; and the proposed methodology detailed in Chapter 3.

In-depth Interviews

Participants were asked a series of open-ended interview questions pertaining to three life-course domains: marriage, parenthood, and career. The interview questions were used as a guide for each participant to use in directing their narrative, choosing salient experiences and giving detailed, context-specific information regarding the impact CD has had on their decision- making.

Data Collection

In designing this project, the goal was to form a better understanding of how chronic illness impacts decision-making across a life course. I chose to use interviews as the primary method for data collection. After careful consideration, the interview was selected because of its ability to provide an open environment in which people living with CD could tell their stories and describe their lived experiences with their illness. In-depth interviewing allowed participants to give comprehensive accounts of events and turning points that shaped their life course after

they received their diagnosis. One important benefit of allowing individuals the space to share their illness narratives was that it provided an opportunity for respondents to make sense of what had happened, and give meaning to changes to their social roles or identities. Although specific details may not resonate with particular readers, it is difficult not to recognize the vulnerability they reflect.

In-depth Interviews

The interviews lasted between 60 and 90 minutes on average, and were primarily conducted over the telephone. Three interviews were face-to-face with eligible participants in the area. While I would have preferred to have face-to-face interviews with all of my subjects, this simply was not possible for two reasons: the geographical locations of the respondents, and issues related to their health. Since CD does not have a high rate of prevalence in America, respondents were obtained from many states, including Alaska. A second concern was respondents’ wellbeing. Often, interviews were rescheduled or delayed due to poor health and other complications related to CD. One of the most common complaints from CD patients is overwhelming fatigue or exhaustion. Therefore, face-to-face interviews would have been an unreasonable requirement. Many participants did not want to cancel because they were eager to tell their stories. Some were experiencing active symptoms of CD, but preferred to do the interview as a means of distraction. I considered the possibility of having these discussions via

Skype, but I couldn’t rely on the software offering a dependable connection, minimal distractions, and quality audio recording.

Interview schedule

First, I created a flexible interview guide with open-ended questions about three social milestones: marriage, parenthood, and career. I also included some basic demographic questions in the opening to familiarize myself with the respondents and build rapport. As I collected more interviews and began line-by-line coding, I noticed that participants had interesting perspectives on remission, body image, and acceptance of the CD diagnosis. While these were not initially a part of my focus, I allowed the data to inform my interview schedule and made changes as the interviews progressed. Additionally, I began to add new notes to my fact sheet to include emerging contexts that might influence participants’ decisions. These included family histories, remission status, and whether or not they wanted children. The final fact sheet and interview guide are included in Appendices A and B, respectively.

Interview process

Twenty-seven participants were recruited from social media support group pages, while three were recruited via word of mouth or because I already knew them. No participants contacted me as a result of the flyers I had posted in local University Hospital physicians’ offices. Before distributing my recruitment script to any of the online support group webpages, I first asked the administrators for permission. All leaders agreed and I followed up periodically to verify ongoing permission. In my recruitment post, I included a brief description of who I was and my goal for recruiting individuals for this research. Most participants replied to my message via social media messaging, but a few older participants preferred to use email communication.

Interested potential participants were then emailed a more detailed description of the phone interview, research process, and method for keeping their information secure. I also sent them a consent form to review and sign before their interview. Before engaging in the interview, I asked if they had any questions and reviewed consent. I reminded them that they were directing the

interview and thus were free to stop at any time. Thirty interviews were collected from August

2016 to February 2017. All phone conversations were recorded in their entirety, using two methods to ensure that no data were lost. First, I used a call recording service called NoNotes.

Before I phoned a participant, I dialed a 1-888 number to reach the service, and they connected the call and recorded it. Second, as a backup recording method, I also used a digital tape recorder. After the interview was recorded, it was sent to a third party to be transcribed and formatted for analysis. To ensure the protection of my participants’ information, both the transcription service and I signed confidentiality agreements stating that no information or audio files would be retained or shared.

Reciprocity

Reciprocity was an important aspect of my research design because I was concerned with the imbalance between researcher and subject. This concern is documented repeatedly in my reflective journal. Below is an excerpt from an early stage of data collection, about five interviews into the process.

I question how much I’m taking from participants in asking them to reveal some painful details. Throughout the process I have been conscious of what I’m taking from them … At the end of each interview, I build in time for them to ask me anything they want. I feel this is a small step toward power equality between me and the interviewee … How much do participants expect from my research? Do they think it will change the way they are treated in public and ERs? Viewed by medicine or their families? Will this research give credibility to their suffering? The meaning they make during the interview is sharing and reconstructing their story. Meaning is their power in this disease, which is hard to control. This transparency is worth pursuing. (Reflective memo; 11/27/16) Reciprocity involves the open negation of power, a give-and-take relationship across both sides of the research connection. It is self-critical and conscious of the power structures at work.

Reciprocity also redefines the association between participant and researcher and seeks to

understand how a study might benefit participants in the way they wish (Powell & Takyoshi,

2003). To engage in reciprocity, after the interview was over I allowed participants to ask me any questions they might have about my life with CD. This was probably one of the most vulnerable things I did during this research process because I was now open to prodding about my own experiences and emotions. For the most part, participants were interested in how I was diagnosed, at what age, and whether family and other contexts helped or hindered my independence as an adult. I expected these questions and thus could engage in a certain level of emotion management.

Data Analysis

In order to manage the large volume of data, I conducted my data analysis while also collecting additional interviews. Before importing the transcripts into the qualitative analysis software Nvivo 11 (QSR International, 2012), I changed any identifying information about the particular respondent. I began my first round of coding of the interviews by working line-by-line, making notes and memos along the way. This allowed me to focus on smaller passages and view the data through a sociological lens. Next, I reorganized my code, collapsing some categories and providing more detailed explanations in areas. I reviewed my memos and journal to make sure that my data were coded consistently across all interviews. The second round of coding began with an analysis of any relationships among the participants, any themes and patterns that emerged. I continued to refine my codes and convert sub-codes into axial codes that supported the core construct of chronic illness across the life course. These axial codes identified overreaching patterns throughout the data. I continued to engage with the data through comparison methods and read studies in the field of medical sociology. Finally, the patterns

turned into threads, and later began to reveal how chronic illness impacted these respondents’ sense of agency in meeting their life landmarks.

Positionality

My positionality as a person living with CD is what made this research possible. I had a deep sense of empathy for my participants because of my own experiences with the disease.

Respondents repeatedly told me how good it felt to talk to someone who really understood what it was like to live with this disease. By disclosing my illness as part of the research design, participants were made to feel more comfortable with sharing private information, as compared to speaking with a researcher who was not chronically ill. “You get it” or “I’m sure you know what that feels like” were common phrases. It was evident that some participants didn’t have the precise vocabulary to communicate how things had changed for them, and therefore relied on my knowledge as a fact checker to support them through their trepidation. Finally, because of my intimate experience with the health care system as a patient, I was very comfortable with medical terms, medications, side effects, and surgeries, all of which facilitated participants speaking in the way best suited to them, without having to explain terms to me.

Trustworthiness of the data

The key issues of reliability and validity are fundamental aspects of all research because they indicate to outside scholars if the study’s findings as trustworthy and credible (Brinkman &

Kvale, 2008). Assessing the validity and reliability of qualitative research has been addressed by a number of scholars (e.g., Creswell & Miller, 2000; Golafshani, 2003; Guba & Lincoln, 1994;

Kirk & Miller, 1986; Lincoln & Guba, 1985; Maxwell, 1992). In qualitative work, terms such as

credibility, dependability, conformability, and transferability are used to describe the trustworthiness of the data collected in a manner that reflects the particular challenges to that qualitative research. Below, I highlight the steps I took to ensure the integrity of the data collected.

Credibility

The credibility (or validity) of the data is a key component of the research design; it gives evidence to the trustworthiness of the data collected (Lincoln & Guba, 2000). Seeking credibility in research is not a matter of verifying the conclusions reached in the study, but rather a means of testing their validity. In qualitative research, credibility places an emphasis on the methodological as well as the interpretive validity (Mason, 1996). To enhance the methodological credibility of this work, I triangulated the data from multiple sources, yielding a fuller, richer picture of the impact of chronic illness on a persons’ agency in relation to the achievement of social milestones. Triangulation means confirming themes and developing a more complete understanding of the phenomenon of interest via multiple methods, theories, investigators, and sources (Creswell & Miller, 2000, p. 127). I showed consideration for the interrelationships among my research question, conceptual framework, and methods by memo- ing what relationships I saw in the data and keeping a reflective journal on how I might be influencing the research and vice versa. With regards to the main data collected through the in- depth interviews, I followed Lincoln and Gubas’ (2000) recommendation of charting my interpretations through both journaling and memos. This triangulation illustrated how well- paired the research methods and research question were as the data analysis unfolded. A second tactic I used to enhance the interpretive validity of the present study was searching for discrepant cases and submitting to peer review (Lincoln & Guba, 2000). I looked for contrary cases and

instances that tested my expectations and findings. I also reviewed and discussed my emergent findings with colleagues as a further way of ensuring that I was staying true to my participants’ stories and their particular contexts.

Dependability and Confirmability

Assessing the dependability of the findings means determining whether they comport with the data collected. This is usually referred to as the “transparency of method,” or how well one is able to leave a detailed audit trail that denotes comprehensive accounts of how the data were collected, coded, and analyzed (Merriam, 1998). As mentioned above, I kept a reflective journal and made detailed memos and annotations of how the data were handled. To contribute to the organization of these sources, I classified each memo with a tag that I could easily recognize and reference. There were three types of memos: analytical, coding, and theoretical.

Analytical memos (AM) tracked key methodological decisions, such as changes in the target recruitment age. Coding memos (CM) denoted how categories were defined and which categories were collapsed into other codes. Lastly, theoretical memos (TM) were used to record details of the relationships and patterns that emerged from the data. As my interpretations changed, I could refer back to earlier memos to see the series of steps leading to how that particular conclusion had changed. I also used my memos to modify my interview guide and included member-checking as a means of discussing with participants emerging themes, concepts, and clarifications. All memos and journal entries were dated and time stamped to further show transparency regarding the time of creation. These methods of memo-ing and leaving a transparent audit trail of my methodological decisions contributed to the dependability and confirmability of my data.

Transferability

Generalizability was not the goal of the present study. Rather, I was concerned with the transferability of the findings to other contexts. Transferability, according to Lincoln and Guba

(2000), is the way a reader determines if the study’s findings in one context can transfer to those of another context. It is thinking within the bounds of a certain context and determining whether the findings are applicable to similar, yet not identical, circumstances (Patton, 1990). I addressed the issue of transferability by providing as much and as rich a set of details about my participants as possible, including information about their complex lives and contexts within which they live.

Chapter Summary

In summary, this chapter provided a detailed description of the methodology used to study how persons living with a chronic illness cope with the constraints of their disease while still pursuing adult millstones such as having a career, getting married, and becoming a parent.

In-depth interviews of 33 participants were conducted over the telephone as a means of gathering rich, detailed accounts of their illness experiences and how they intersect with their biographies, all in service of my research question. I used transcriptionist services and NVivo 11 software to aid specific stages of the research process and data analysis. My confidence in the trustworthiness of the data collected and subsequent findings and conclusions is bolstered by my transparent and meticulous handling of the data.

The next three chapters are presented as distinct but related journal-length manuscripts that focus on discrete aspects of the illness experience, including clinic visits, disclosure and managing the subsequent stigma in the workplace, and biographical disruption and psychosocial distress. The connecting thread throughout these chapters is one of human agency, a topic that I argue is lacking in much of the current research on chronic illness. The specific findings presented in the following chapters are limited to the lived experiences of persons living with

CD; thus, I confined my discussion to those experiences. I believe that the insights and narratives of the constraints of managing CD are applicable to a variety of chronic illness experiences that affect decision-making throughout the life course.

CHAPTER 4. “It kind of stops me in my tracks sometimes”: Biographical Disruptions and Psychosocial Distress

In this chapter, I empirically explore how people living with Crohn’s Disease (CD) view their chronic illness within a personal context, noting how their illness experiences are intertwined with stress and their mental health. I argue that the many repeat disruptions across the life course likely contribute to a patient’s self-reporting of psychological distress, including issues of anxiety, depression, grief, and feeling left behind. Some of the literature has suggested that due to the recurrent nature of chronic illness, most people cope by normalizing the illness and its effects. However, I argue that coping and achieving a sense of stability or coherence may be difficult, since repeat disruptions lead to a constant state of distress. The resulting stress impacts many areas of social life, including family, marriage, schooling, and career. I find evidence and support for biographical disruptions even when participants have generally adjusted to living with their chronic conditions. I draw on theoretical concepts of the stress process and Life Course Perspective to frame my discussion of the findings. Finally, I conclude with a call for further study of the mental health conditions of those living with CD.

Introduction

There is little doubt that the onset of illness can call well-practiced routines into question, interrupting long-standing conceptualizations of the body and self (Charmaz, 1993; Lindsey,

1997). Life events may not follow a linear or even coherent path, particularly in the face of unpredictable and relentless episodes of chronic illness (Frank, 1995). In the past 30 years, interest has increased in people’s lived experiences with chronic illness. One area of debate is how scholars interpret the disruptions caused by disease and the ways these interruptions impact

a patient’s biography. This chapter contributes to the growing literature on the debilitating impacts of a chronic illness on people's lives, with a particular focus on the intertwined life transitions of people living with Crohn’s.

CD is a chronic inflammatory condition of the gastrointestinal tract, characterized by intermittent flare-ups of pain, weakness, fatigue, cramping, and/or diarrhea. The causes of CD are not well understood. Diet and stress may aggravate the condition. Recent research has suggested that genetics and/or environmental factors may contribute to its development. Few studies, however, have contextualized people's subjective experiences with CD, or examined how experiencing disruptions might influence their life courses and ability to reach normative milestones. As such, we know little about how one's life trajectory and biographical disruptions impact individuals’ perceptions and experiences of CD over time.

Biographical Disruption

Bury’s (1982) foundational piece on chronic illness as a “biographical disruption” suggests that experiencing a chronic illness upsets the “structures of everyday life” (1982, p.

169), disturbing a person’s biography and their future selves. Charmaz (1983) argued that people living with chronic illness may experience social losses and changes to their self-concept. Other scholars have applied the concept of biographical disruption to a wide scope of acute and chronic conditions, such as stroke, cancer, multiple sclerosis, and rheumatoid arthritis (see Dyck, 1995;

Levealahti et al., 2007; Roberts & Clarke, 2009; Grassman et al., 2012; Hannum & Rubinstein,

2016). Illness is unexpected and marks a “then and now divide between life before and after illness” (Bury, 1982, p. 169). Carricaburu and Perret (1995) extended the discussion of these disruptions, finding that in their sample of HIV-positive men, diagnosis served as a

reinforcement of part of their collective identity. More recently, Alexias and colleagues (2006) found some positive aspects of living with HIV/AIDS, such as refraining from substance use.

Normalcy

In contrast to biographical disruption, other scholars have noted that “biographical continuity” and “biographical flow” are ways people intermix the “normal chaos” of an illness with their biography, reinforcing certain aspects (Bell, Tyrell, & Phoenix, 2016; Faircloth et al.,

2004; Llewellyn et al., 2014, p. 55). For the elderly, illness is expected and inevitable (Pound et al., 1998) and some view having a stroke, for example, as part of the normal aging process and the next chapter of their ongoing biography (Faircloth et al., 2004). Saunders and colleagues

(2002) found that osteoarthritis is conceptualized as disruptive, but also perceived as part of the normal aging process.

However, questions have been raised surrounding the concepts of normality and biographical continuity. Emerging research has suggested that people whose lives are dominated by chronic illness can still see their life courses disturbed by the emergence of new illnesses and/or symptoms (Sinding & Wiernikowski, 2008). In a similar fashion, Larsson and Grassman

(2012) argued that while many illness complications are anticipated in older age, this anticipation does not necessarily equate to a lack of impact on the individual's life, and thus such issues still present challenges to the “normal” illness argument (for a review, see Williams, 2000). Research has shown that losses may be simultaneously feared, unexpected, and anticipated (Reeve et al.,

2010). While people living with a chronic disease may feel confident in handling familiar issues, they can also be overwhelmed by the onset of new stages of their condition (Lindsay, 2009;

Richardson et al., 2006). As such, they struggle to “re-choreograph everyday routines in the face of uncontrollable symptom manifestations and trajectories” (Bell et al., 2016). For some, the

extent of the disruption relies on the context of the diagnosis. People interpret an illness as disruptive if no additional support is given following the diagnosis (Raymond-Barker, Griffith, &

Hastings, 2018).

Life Course Perspective

The Life Course Perspective is a multidisciplinary framework for studying people’s individual lives and structural contexts. It highlights the relationship between the individual and the sociohistorical context in which they live. The life course is defined as "a sequence of socially defined events and roles that the individual enacts over time" (Giele & Elder, 1998: 22).

They constitute the sum total of a person’s lived experiences. As such, an in-depth narrative analysis may lend itself to the use of the Life Course Perspective to examine the lives of people dealing with chronic illness. The Life Course Perspective has the advantage of looking at trajectories across many cumulative time points. Aging and developmental changes are ongoing processes that are experienced throughout a lifespan. As such, the life course reflects the intersection of social and historical factors with personal biography and individual development, within which the study of social change can ensue (Elder, 1985).

Key Principles and Concepts

My research focuses on a few key concepts of the Life Course Perspective, including the time of life, trajectories and transitions, and turning points. The time of life, such as childhood or old age, influences social positions, roles, and expectations. For example, the timing of an illness can be a critical element, as it interrupts an individual’s ability to fulfill certain time-specific roles. If a critical illness occurs in childhood, it may shape educational experiences and future work opportunities, depending on how much loss the person experiences. Taking the life course

approach to the study of chronic illness provides a framework for examining the interactions among the social structures of healthcare and individual behavior. Within specific social structures, people dealing with chronic illness live out trajectories, sequences of states within a defined range of experiences. Common examples include educational and career trajectories.

Sociologists have also considered the notion of “illness careers,” defined sets of experiences related to living with long-term illness (e.g., Grue, 2016; Pavalko & Pescosolido, 2007; Rossen et al., 2019). Trajectories are long-term pathways and patterns of development within major social institutions such as healthcare or the family. Within these trajectories are transitions, changes in discrete life events (e.g., from single to married, from well to sick, etc.). A change in trajectory can include multiple transitions. For example, changes to a person’s illness career can include multiple disruptions and transitions over time. A diagnosis of chronic illness serves as a turning point that results in an individual making adjustments to their social, emotional, physical, and possibly vocational selves (Millen & Walker, 2000). Conceptually, this implies that certain illness events literally change the direction of the life course (see Gregory, 2005; Nagin, Pagani,

Tremblay, & Vitaro, 2003; Ronka, Oravala, & Pulkkinen, 2003).

The initial impact of being diagnosed with a chronic illness can result in denial, shock, feelings of loss and grief, anxiety, and depression. Individuals suffering from chronic illness must adjust to the stress of treatment, symptoms of the disease, financial burden of health care, changes in family structure, and feelings of vulnerability and loss of control (Millen & Walker,

2000; Linveh & Antonak, 2005). While people with chronic illness desire to live without the constraints of constant medical assistance or care, sometimes certain limitations are unavoidable and the individual is forced to adapt to a different way of life (Gregory, 2005).

Impact of Disruptions and Stress on Mental Health

Living with a serious, long-term illness can launch people into a separate reality, one with its own set of rules. Changes in health status mean moving between two worlds or citizenships

(Sontag, 1988): illness and health. When there is ongoing illness or only partial recovery, as with chronic conditions, people are forced to adapt or modify previous ways of being and social roles in order to accommodate their health needs, as well as their personal and society’s expectations.

For those who struggle to find coherence or bring biographical order to their illness experiences,

“biographical limbo” (Lindsay, 2009) and “chaos narratives” (Frank, 1995) may occur.

Experiencing disruptions to one’s biography may lead to psychosocial distress. For example, women’s narratives of their experiences with breast cancer have revealed chaotic lives following their diagnosis; many responded with shock, fear, anxiety, and a loss of hope (Liamputtong &

Suwankhong, 2015).

There is substantial evidence supporting the relationship between increased stress and poor mental health outcomes (e.g., depression, anxiety, panic disorders, etc.) (Katerndahl &

Parchman, 2002). As described above, repeated disruptions resulting from health concerns may add considerable stress because they upset an individual’s feelings of certainty and control. The

Stress Process Model emphasizes the role of stressors that challenge the ability of individuals to adapt to a broad array of problems, including health issues. Stressors include disruptive events and persistent social inequalities (Pearlin, 2009). As research has shown, stressors also contribute to poor mental health outcomes (Pearlin, 2002). The review of the literature conducted for this research showed that experiencing one stressor, whether an abrupt event or chronic inequality, could lead to exposure to secondary stressors over time (see Pearlin, 2010). This is called stress proliferation, and it may result in cumulative health problems (e.g., Turney, 2014).

Past studies have revealed a range of negative outcomes for those suffering from contested illnesses, including fighting for legitimacy and access to healthcare (Banks & Prior

2001; Dumit, 2006; Raheim & Haland, 2006; Shriver & Waskul, 2006; Ware, 1992; Werner &

Malterud, 2003). Participants struggling with chronic pain and fibromyalgia reported having a precarious relationship with their “treacherous” bodies (Raheim & Haland, 2006). For such individuals, it can be difficult even to achieve a medical diagnosis and social recognition of their suffering (Werner & Malterund, 2003). Many have been denied healthcare due to lack of empirical evidence of illness (Dumit, 2006), and some have even been accused of faking their ailments (Clarke & James, 2003; Kleinman, 1995; Ware, 1992). Shriver and Waskul’s (2006) study showed that veterans suffering from Gulf War illness experienced stigma and threats to their credibility, in addition to suffering various assaults on their social status as veterans, questions of their emotional stability, tension in their social relationships, and threats to their sense of selfhood. Few studies have focused on the actions participants do in response to other people questioning the credibility of their illness, and also the credibility of themselves as person.

Research has also shown that individuals living with chronic illness experience significant feelings of grief and loss, which re-occur at various times in life (Anderson &

Brackett, 2005). They also reported persistent issues with social isolation (Kvaal, Halding, &

Kvigne, 2014), hopelessness, helplessness, guilt (Alderson, Glidewell, & House, 2014), frustration, fear (Tiwari, 2015), ineffectiveness, feeling as if their chronic illness ruled their lives and defined them as individuals (Walters, 2017), and struggles with balancing the demands of their illness with the requirements of their lives (Jeon et al., 2010). It is common for people to experience co-morbidity with physical and mental illness. Depression, for example, is estimated

to impact up to 60% of stroke survivors, 45% of those with heart disease, and 30% of individuals living with cancer and diabetes, as compared to the general population (Voinov et al., 2013).

The same factors that increase the risk of depression in otherwise healthy people also affect people with medical illnesses (NIMH, 2017). It is common to feel sad or discouraged after a heart attack, cancer diagnosis, or when trying to manage chronic pain. People may face new limits on what they can do, and as a result feel anxious about treatment outcomes and the future.

It may be difficult to adapt to repeat disruptions and cope with the changes and ongoing treatment that accompany the disease course. Furthermore, favorite activities like hiking or gardening may be harder to do, or even impossible. Sometimes, symptoms of depression may follow a recent medical diagnosis, but lift as people adjust. In other cases, certain medications used to treat the illness may trigger depression (NIMH, 2017). Depression may persist, even as physical health improves (NIMH, 2017). Research has suggested that people with depression and other medical illnesses tend to have more severe symptoms of both. They may have more difficulty adapting to their co-occurring illnesses and incur more medical costs than those who do not also have depression.

Research has shown that mental health issues are highly prevalent in individuals with ongoing symptoms of active IBD (Knowles, Andrews, & Porter, 2018), a chronic disease that may be associated with a variety of debilitating symptoms, in addition to the stress associated with an uncertain prognosis. It is little surprise, then, that there is an increased incidence of psychiatric disorders post-IBD diagnosis, as compared with matched controls (Bernstein, 2018).

Psychiatric diseases pose unique challenges for persons with IBD, especially since there has been little research exploring the treatment of such conditions in those suffering from both (Feist et al., 2016). In this chapter, I present the findings of an in-depth narrative study exploring how

people living with CD, an ailment similar to IBD, experience the intersection of major life transitions, biographical disruptions, and mental health distress. To do so, I draw upon the concepts of the Life Course Perspective and the stress process.

Method

I drew upon data from 35 semi-structured interviews with persons diagnosed with CD, living in the United States and between 23 and 54 years of age. Participants were recruited through snowball sampling (n = 10) and convenience sampling (n = 25) from three different support group pages accessed through social media. Participants’ median age was 37. The average length since diagnosis was 17 years, but ranged between 3 and 34 years. The majority of participants were diagnosed in late adolescence (with a few exceptions), making the average age at diagnosis 21 years. See Table 1 for more sample demographics, including length of time since diagnosis.

Interviews

Telephone interviews lasted between 45 minutes and three hours, with an average length of 90 minutes. They were primarily conducted over the telephone, due to: 1) the geographic locations of participants, who were spread across 22 states; and 2) respondents’ health. Written consent was obtained prior to each interview. Participants were asked a series of open-ended interview questions pertaining to three life course domains, including marriage, parenthood, and career. The interview questions were used as a guide, but each participant directed their narrative, self-selecting the most salient experiences for discussion.

Data Analysis

Charmaz’s (2014) suggestions of best practice when conducting qualitative research were followed throughout the course of this study. I conducted my data analysis while also collecting interviews. Before importing the transcripts of these interviews into the qualitative analysis software Nvivo 11 (QSR International, 2012), I changed any identifying information about the participants. I began by open coding the interviews in a line-by-line fashion, making notes and memo-ing along the way. I continued to refine my codes and document the sub-codes into axial codes that supported the core construct of chronic illness experiences. These axial codes served as overreaching patterns throughout the data. The patterns evolved to illustrate a perspective on how chronic illness impacts one’s claim to legitimate illness behaviors and the difficulties persons with invisible chronic illnesses face when trying to behaving as credible patients in their interactions with the medical community.

Results This chapter’s findings have two components. First, I demonstrate the nature of the repeated disruptions people living with chronic illness experience across their life course, using the milestones of school, work, marriage and other relationships, and parenthood. Second, I investigate the likely connections between repeat biographical disruptions and poor mental health.

Finding 1: Biographical Disruptions across the Life Course

All participants (n = 35) experienced disruptions prior to achieving one or more of the milestones of school, work, marriage and relationships, and parenthood. Respondents were asked to reflect on their lived experiences with chronic illness while striving to meet these socially expected adult moments. Repeat biographical disruptions that occur across a life course are likely to contribute to participants’ psychosocial distress, resulting in anxiety, depression, grief, and feelings of being left behind by their peers.

Disruptions to Schooling Most participants (n = 20) elaborated on the disruptions that their chronic illnesses created in their efforts to meet their educational goals and vocational training. They reflected on the impact that these disruptions had on their personal development and relationships with their peers. They reported feeling left behind, both academically and socially. Brittany, age 27, worked full time as a medical assistant. In her narrative, she explained how her chronic illness interrupted her schooling to the point that she was already a year behind academically, before having to take a semester off for medical reasons. She also explained the effect that the illness had on her body image, self-identity, and relationships with her peers, stating:

[I] got through college, and I mean it still definitely disrupted things. I would say, like … academically I was like a year behind, without taking off school. That kind of set me back more. I decided to take basically a semester off. So that was hard, [being] behind my peers. Then I felt like that’s such a crucial time developmentally, and so for your self- concept and your body image and all that stuff, and that really threw me off. I was, like, having to figure out an ostomy bag when my peers are just like out partying. I have this thing that I have to manage and think about all the time. Dietary restrictions, drinking restrictions, whatever. That was really hard.

Brittany highlighted the impact that chronic illness had on her development as a teenager. She explained the additional burdens she suffered because she was sick, and how they disrupted her goals in school. She had to learn how to handle her illness, ostomy bag, body image, dietary restrictions, and inability to drink or party, all while pursuing academic success. Despite these hardships, Brittany finished her degree in the field of medical assistance. Not all participants in the study finished their educations in what could be described as a “normal” way. Some were homeschooled, others dropped out of school or college, and some took 10 years or more to complete their college degrees.

Other participants shared their experiences dealing with chronic illness, school demands, and the disruptive impacts the two had on one another. Some (n = 12) were forced to drop out of 54

school because of their declining health and intrusive CD symptoms. Andrea, age 25, was a full- time music teacher who aspired to earn her PhD in music. She explained how the severity of her illness played a significant role in her decision to pursue her graduate degree. In her words:

I mean I didn’t go on [with] my plan originally after my masters, [which] was to pursue my doctorate, and I wasn’t confident. I was just too sick to think about going back to school. So I did decided not to continue my education further, which I do regret a little bit [sigh].

Andrea assessed her health condition before deciding to leave graduate school with her master’s degree. She explained that she regretted that decision because she had wanted a PhD for many years. Unfortunately, her chronic illness prevented her from pursuing further education.

Similarly, Charlie, age 35, who worked as a gas station attendant part time, explained how having a chronic illness disrupted his college pursuits. In his words:

I was in college when I was 24 or 25, I think. I went for Computer Science, with the focus on like, game, video game creation. Then it was a four-year [program] and I made [it] through two. I did quit because of Crohn’s and I do regret that.

Feelings of failing to fulfil their full potential persist throughout these narratives of biographical disruption, and are prominent in descriptions the respondents gave of trying to reach certain milestones. Charlie, like Andrea, regretted not finishing a degree program in a traditional fashion. There is a social expectation of finishing a college education in four years, with no breaks.

Adrianna, age 28, was on disability due to her declining health. She was home-bound and fed solely by IV fluids to bypass all eating and digestion. She told of her time as a graduate student at Capital University3 while dealing with her chronic illness.

I was a PhD candidate and if I could have gotten six to nine months of uninterrupted healthy time, I would be a PhD. But that’s - it’s just - that was all I needed. All I needed was six to nine months of healthy time, and I couldn’t get it. So I made the choice to

3 Name has been changed for purposes of anonymity. 55

instead of putting my life on hold and going on leave again … I had to leave the program or go on leave. It’s like I could have gone on leave again, but you understand, I don’t have a condition that if I go away for a year and come back a year later I’m magically going to be much better. So I made the choice to take a master’s degree instead of pursuing, instead of continuing to pursue the PhD, which was one of the hardest decisions I’ve ever had to make. The above narrative shows the importance of uninterrupted health in order to move forward in life. In other words, the disruptions caused by chronic illness repeatedly interrupted and eventually prevented Adrianna from completing her doctoral studies. This also highlights how getting short-term leave from school is not sufficient in certain cases, based on the chronicity of the illness. Even if Adrianna’s condition improved, she would still suffer from CD.

Work and Career Disruptions

Many participants (n = 23) expressed difficulty with managing both work and health needs. Some explained that they searched for jobs that suited their physical limits or occasionally needed more time off from work. Sadly, some told of being illegally fired from jobs, a direct result of their chronic illness. Consequently, many participants experienced biographical disruptions taking the form being forced to choose different career paths according to their health status, voluntarily quitting the workforce due to poor health, and/or leaving their careers because of illegal dismissal. Daniel, 37, was a full-time attorney. He tells his story of how CD disrupted his career path, stating:

So, from 2003 when I had the surgery, to 2006, I would [say] that the Crohn’s connected with my career in ways that nearly derailed it. So I was in completely bad shape. Well, this law firm that had invested all this time and money into me, paid for my bar review classes, all that. They expect[ed] me to come in and start delivering under the promise that I had demonstrated, because then they hired no one and I couldn’t do it. I just couldn’t physically do it. I couldn’t work long for long hours. I couldn’t focus. I was fatigued and they, for their credit, they were very supportive for probably longer than they needed to be. But three years - two and [a] half - three years into it, I just kind of, I got the feeling that it had been long enough and it wasn’t going to work. I just, I was not

going to be able to dedicate the time and the focus to the firm and to [do the] work that they wanted me to do. Above, Daniel’s narrative shows how he had to terminate his relationship with a law firm that had supported him. He couldn’t continue to work for them anymore, due to the physical limits and disruptions resulting from his chronic illness. Surgery and hospitalizations severely disrupted his career. Similarly, Diana, 51, described her surgeries and medical injections as repeated disruptions to her ability to work as a grocery cashier. In her words:

So, [it] was in 2007. So, I quit work because in 2010 [I] was having constant surgeries. I was in the house doing injections. So I never worked. I was just constantly having surgery so I just couldn’t work and I was bedridden. So from 2007 until 2013, I didn’t work. I just tried to get better. Diana’s health and repeated disruptions contributed to her quitting, due to increasingly disabling circumstances.

Many participants chose careers based on their health and physical limits, knowing that their illnesses were chronic and might include repeated disruptions in the future. Charlie, age 35, was trying to figure out how to circumvent his health problems in order to continue working. In his words:

It’s also been a challenge to try to figure out what kind of work I can do that doesn’t kill [me]. Because if I do any type of strenuous exercise activity that involves my midsection, depending on carrying, training, and blah, blah, blah, I’m going to die. Well, when I’m at work and I can’t even stand and my back is killing me, I’m cramping, I’m running to the bathroom, and I’m tired, and I can’t lift anything and I [am] just throwing [up], I can’t work. There ain’t no way you want me to stand here and be a cashier or do this or do that when I’m about to die. Like I couldn’t hold a job. So I had to do the big boxes and I couldn’t keep up, so they did not return me from that one. I’ve had, I’ve worked through the stuff at a potato packing plant, and I didn’t even last until noon before I was wiped, and then I’d go home.

Charlie’s chronic illness disrupted his job opportunities and ability to work. The narratives above reflect a theme of “health first.” It is clear that chronic illness disrupts daily life, as well as life course milestones like having a career.

Firing Biographical disruption can also occur when an employer illegally terminates someone’s position at work due to illness or disability. Several participants spoke of how difficult it was to maintain a job while managing a chronic illness (n = 14). Brooklyn, 46, described her experience leaving work on Family and Medical Leave (FMLA), and having her accounting position terminated as a result, stating:

I worked at ABC Co. Yeah, and I was an accountant there and so you know I was always close on the FMLA time. You know, like, I said I got [a] disability from social security because actually ABC Co. wrongfully got rid of my job while I was out on disability. Yeah, because the new boss that I got was an ass. It was almost like he was out to get me. Like he would remind me, you are very close to your FMLA time and, you know. Because that’s what it was. I was taking FMLA time on disability and he wrongfully terminated my job … That’s what they did wrong. They got rid of my job while I was on disability, which is against the law. Brooklyn explained that her boss did not understand why she needed to take more time off from work for medical reasons.

Similarly, Eva, a 26-year-old part-time photographer, told of her first job, where her boss was not understanding about her medical condition. In her words:

Yeah, and I ended up getting pretty sick the first year that I worked there, and was needing to take more time off. My boss was not very understanding about that, so she ended up letting me go. That [was] sort of when I realized like even if I were to start working again, I can’t. That’s not the kind of job that I can do … Yeah, that’s sort of when it [was] like really set in stone for me. After that first job, I didn’t work for about a year because I was like honestly afraid of anything I went into, that same scenario would happen.

Eva’s experience being fired from her first job was a disruption to her career that shaped her decision to find a future job able to accommodate her illness. She described how her current position working part time was a better fit. For participants, maintaining steady employment is crucial to providing medical insurance, as well as income. Being fired, therefore, is a disruption to their career, finances, and insurance.

Marriage and Relationships Disruptions Additionally, most participants (n = 27) expressed disruptions in their efforts to find love, form relationships, and get married. Participants described losing hope in finding love, and feeling like unequal partners when they did form relationships. A few expressed how having a chronic illness contributed towards their marital separation or divorce. Addison, age 27, was single and worked full time as an academic advisor. She described how living with CD complicated finding a romantic partner and made relationships difficult, stating:

I, for a long time, I completely gave up on finding love because I was like, who’s going to want to put up with this? Like, it’s one thing after another. I feel like every time I start to feel healthy, something goes wrong and derails it because there were days where all you wanted was just someone to hold you while you lay there, so it definitely was not easy. I had again just kind of [become] resigned to not finding love, and so I kind of went [living] vicariously through romance novels.

For participants like Addison, having a chronic illness with its many disruptions made dating more complicated, because there was the belief that a partner would have to accept or “put up with” the disruptions and changes from CD (i.e., “one thing after another”).

One category of interruption affecting participants’ lives is surgeries. Eva, age 26, considered herself as having developed later compared to her peers when it came to dating, because of the disruptions from surgeries due to her CD. She stated:

Not really, no, and then I was like a late bloomer when it came to dating, mostly because of dealing with surgeries and stuff like that. So I [didn’t] have any close relationship until I was 19. 59

Disruptions caused by CD took precedence over dating and social activities for Eva and others.

Participants expressed significant difficulties in finding partners who would understand what having a chronic illness entailed.

Chronic illness was also found to disrupt some participants’ marriages. The theme of being an unequal partner was a concern for participants (n = 10). Adrianna was 29 and married.

She described how her illness caused her to be disabled to the point where she could not participate in routine household chores. In her words:

I mean [my husband] does barely everything in the house. But just, like, that level of care for him does not happen when I am very ill. So that’s hard. He is very sexually frustrated because I have had eight surgeries. I have a permanent ileostomy. I forget the technical name for it but we call it a Barbie butt.4 I have one of those, which it still hurts like hell after three years. I feel like a very, yeah, I feel like a very unequal partner in our relationship because through no fault of my own … I am. I am unemployed. I am not an income earner. Yeah, it’s so hard to be an adult, so it’s so hard to even approach the idea of being an equal partner in a relationship. I feel bad and then he feels bad that I feel bad and it’s just like this cycle. A few participants directly expressed feeling like an unequal partner in their relationships, due to factors relating to CD. For Adrianna, her illness prevented her from working a “normal job” and thus she was unemployed. She explained how she felt unequal both in terms of bringing in income and doing household chores.

Similarly, dealing with an illness can cause disruptions in a marriage that eventually lead to separation or divorce (n = 12). Natalie, a married 28-year-old, explained the interaction between the disruptive nature of CD and its impact on her relationship, stating:

I know it was incredibly hard on my now husband. I mean, we’ve broken up several times and I know a large part of it is definitely my disease. Either me pushing people

4 Permanent surgery leaving no colon, rectum, and anus, leaving the appearance of a toy doll’s buttocks. 60

away because I feel like I’m a burden and nobody should have to deal with this, or because it was hard. We definitely broke up several times and he told me at one point [that] he couldn’t stick around and watch me die, and that was a year into the relationship. I mean, how do you deal with a brand-new relationship and being 18 years old, watching this person getting so sick? For some participants, the illness itself, as well as the disruptions, surgeries, and hospitalization, all contributed towards divorce or separation. Respondents described how some partners could not cope with the deleterious effects of CD and the recurrent nature of a chronic illness. For

Melissa, aged 46, CD disrupted her marriage and was a contributing factor in her divorce. She described:

But its, it is a big change. I don’t regret, I specifically don’t regret the divorce. Not that my ex-husband was a bad person. We just, we were really young when we got married and, you know. We were growing up hard and he didn’t handle the whole me being sick very well, I think. But he just really couldn’t handle me being sick all the time. It really got to him. We weren’t right for each other and in a lot of ways the Crohn’s is what pointed that out to both of us. So we got a divorce, and in a lot of ways the Crohn’s is part of that because it held a mirror up to my relationship and I realized I didn’t like what I saw. Chronic illness and its disruptions put stress on relationships and marriages, as these participant narratives show. Younger participants said that the illness put their health at the forefront of their concerns. As such, people made their health a priority before seeking out romantic relationships.

Some shared that they had “given up” on finding a romantic partner who would understand what living with a chronic illness might entail. Sometimes, dealing with the disruptions, surgeries, and hospitalizations became too much to handle. As Melissa and Natalie described, the disruptive effects of CD contributed to their divorce and separation.

Disruptions to Parenthood Participants (n = 29) also talked about how illness disruptions interrupted their plans to have a family and raise children.

Infertility In a few cases (n = 10), participants expressed having infertility problems, likely due to complications associated with CD. As a result, they experienced disruptions regarding when and how they could have children. Kylie, 46 and single, discussed her experience with infertility, likely caused by surgery and scar tissue from complications with her CD. In her words:

But adolescence is [a] very unique period of your life, right? I think the first thing that came to mind was: would I be able to have children? … I had [my son] through IVF, so I couldn’t get pregnant and it was years of stress added on. But the Crohn's is what they considered to be the cause. So because of the surgery, like I never, I didn’t go through all these infertility tests to figure out exactly what it was. So, but my gastroenterologist said it was probably scar tissue that would have affected one side, like one side of [the] ovaries or whatever it is. So the other side was probably okay but just reduced the chances by up to 50%, of course. So it was probably [the doctor who] said [Crohn’s] was probably there. So the surgery added to more expense of having to go through IVF twice. Yeah, I miscarried the first one at eight weeks. I got pregnant both times but I miscarried the first time. Although CD disrupted her original plan to naturally conceive her own children, Kylie was able to achieve her goal of having a baby. For other participants, carrying a child was not possible due to the burden CD already put on their bodies. Melissa, age 46, worked part time as a psychologist and was divorced. She told of her experience with infertility while living with CD, stating:

But even before [the doctor] was like, “Don’t get pregnant. Your body just really couldn’t handle it.” I was very upset. I cried and cried and cried for a long time when I first found out. For participants like Melissa, CD disrupted their life course by contributing to infertility and interrupting their plans to become parents. Moreover, chronic illness can also disrupt individuals’ decisions regarding whether or not to have children.

Family Planning Many participants (n = 24) also described disruptions to their plans to have children, expressing two main concerns. First, they worried about getting physically healthy enough to 62

have children. Similarly, they were also concerned about being physically capable of carrying a child, especially while taking CD-related medications. Second, participants did not want to pass on their illness to their children. Thus, having a chronic illness interrupted respondents’ plans to have biological children.

Molly, age 28, was married and worked full time as a nanny; she was also a student. She described her thoughts on having a family while having simultaneously to take care of her health.

Importantly, she stressed the importance of being healthy both physically and mentally before planning on having children, saying:

So, I’m iffy. So, I feel iffy. I … sometime I’m like, “Yeah, I’ll have a kid when I’m 30.” Then sometimes I’m like, “No. I don’t know.” … Like if I got pregnant tomorrow I’ll be like, “Oh, my God! What am I going to do?” I just want me to be in a good place - like, physically - health wise. So I feel like if I did get pregnant I [would] be the one to be really sick.

So, I don’t know. I was looking at the stem cell thing [to treat CD], and I don’t know … The chemotherapy that they use before getting [stem cell treatments] and while doing it and stuff like that. It can. It causes infertility. So I wouldn’t want to look into anything like that until after I’m done trying to have children. Those are very expensive options and I don’t know if that would be an option for me in the future. I would love to look into it if I can’t have my own children, but right now that’s not an option for me.

For participants, putting health first was an important and preeminent goal when planning if and when to have a family. Molly’s narrative is important because it shows how chronic illness can play a significant role in deciding to have children, since CD can influence fertility and potentially make conceiving difficult.

Participants expressed a number of concerns regarding fertility and pregnancy as they relate to chronic illness. Both men and women worried about how taking prescription medications for CD might cause infertility. Like Molly, others also considered the impact of future treatment on their plans to have children, and the possibility of passing CD on to their

offspring. For respondents like Anabelle, age 24, having CD disrupted plans to have children in the future. She discussed feeling genetically responsible for the health of her future children, as well as worrying about the physical challenges of carrying a child while managing active CD.

She stated:

Okay, so currently in my life I don’t want kids at all. I think that [I] would probably … but also now that I have Crohn’s, I don’t want to pass it along and see my child suffer with it. So if I was ever to have kids, like currently I would probably adopt. But I don’t like the stress [of] having a child and being a mom. I can just [see] that, like, triggering my Crohn’s and that’s just something I’m not ready to deal with at all. Interviewer: Is it the stress of being a parent, or physically carrying a child? Both. Because when I, so I’m like physically carrying a child, I’m afraid that if I’m going through a flare, like because my body doesn’t absorb nutrients, like how would my child absorb nutrients? Would that cause other problems or complications when they’re born? That scares me. [Also] I would never want to be the cause of my child being worrying. [Crohn's is] like any type of disability. Because I went to school for special education, I know how hard it is to get help and to be identified, and it’s just stressful. Some participants also discussed how chronic illness impacted the physical health of the mother.

Anabelle noted that the stress of “having a child and being a mom” might activate her CD, making daily activities difficult. She also did not want to pass CD on to her child, if possible.

For Daniel, age 37, having CD was also disruptive to his decision to have children. He stated:

It has entered my mind and it has played a role, I think, in my hesitance to just start having kids. Absolutely. So, it’s been easy for me to have my little anxiety about Crohn’s being at least partially at least a genetic condition … Like, all my friends have kids and I’ve got super baby fever and here you’re having second thoughts because you’ve got Crohn’s. Some participants (n = 16), like Daniel, expressed concern over CD having a genetic component.

Others (n = 14) described deciding not to have biological children due to the requirements of their chronic illness. As the narratives show, having a chronic illness interrupted the plans of some to have biological children. Concerns centered on the ability to physically carry a child and

the risk of passing CD on to their children.

Parenthood (n = 29) Finally, many participants (n = 29) worried about how having a chronic illness would disrupt or otherwise change their day-to-day parenting experiences. For instance, some respondents who already had children had to train them to administer medication or remember important medical facts in case of emergency. Cindy, age 39, was the mother of two daughters.

She described how having CD shaped her parenting in times when her illness was more visible, such as when medication was needed and in emergency situations. In her words:

Yes, my kids are with me. My youngest one, my 9-year-old, is with me when I get myself my shot. She feels like she has to be there with me for some reason. I’m not really sure why. But she holds her breath the whole time I have that thing in there. It’s a needle I push in my stomach and the medicine is really thick, so you got to go really slow to push it in. Now the [medication], I had taught my 13-year-old how to give it to me in case I wasn’t able to give it to myself … But they are, I keep them informed on everything. In case something happens to me while they are with me … they can tell the people “My mom has Crohn’s and this is her symptoms.” Cindy responded to the special circumstances that having CD creates by involving her children in her healthcare. All participants with children shared aspects of their illness with their children.

For Katherine, age 42 and mother of four, severe flare-ups of CD required frequent, lengthy hospital stays at a facility located hours from her home. For two years, her sister-in-law moved in to take care of routine housework and childcare. She said:

It was all we could do to get [the] kids to school with food and get food in our stomach for the day and [get them to do] their homework. Does that make sense? That’s all we could do, for, I will say close to two years. Katherine and her family experienced significant disruptions to their daily routine, which required caring for four young children. Like most participants, she felt that the disruptions to her parenting occurred when the illness was most visible.

Similarly, Grace, a 46-year-old TV producer, described a time when she experienced painful symptoms that disrupted her time with her daughter. She spoke of how she had to rely on her daughter to help her deal with her bowel movements when in public. In her words:

So, I said “Lydia.” I said, “Mommy has got a problem.” She was like, “I can hear your stomach, mom. What's wrong?” I said, “I thinking I’m not going to make it home to the bathroom.” She put her hand on my arm and she said, “That’s okay mommy. I’m not going to run away from you if poop in your pants. I’m still going to love you.” She said, “Do we need to go behind the tree or bush?” Oh! That was so nice. No one could [understand]. I said, “No honey.” I said, “Let’s just keep moving. Let’s just keep walking and then whatever happens, happens.” That’s what we did and she just, we went home and she got a garbage bag for me. She says, “We’re just going to throw it away.” And we threw it away … I took a shower and she got a towel for me and she just … acted [like] it was all normal. We sat on the couch, we had tea, and she just held my hand. Grace’s illness was more visible due to its disruptive symptoms. Her daughter normalized the situation, and provided emotional support during this difficult time.

Other participants noted the impact of these disruptive experiences on their children’s personalities. Savannah, age 51, had one daughter and worked full time in a factory. She described the influence of having multiple disruptions from her chronic illness on her daughter’s sense of compassion for other people, saying:

She’s never known me any other way. Like, to her, mum has always had stuff to deal with. So she, I kind of would like to think it’s made her [a] more compassionate, understanding person for people with chronic illness. Yeah, I was very open with her, but it was just she and I since she was four. So yeah, it’s, she is pretty cool that way. While chronic illness does disrupt participants’ parenting roles, such disturbances could also provide children with opportunities to cultivate an understanding of what others living with an illness or disability must go through just to survive. As shown in the narratives above, having a chronic illness can disrupt parenting activities, especially when the illness is visible. Notably, having a chronic illness impacts both the sufferer and their families. Respondents in this study

noted a positive impact, though, explaining that their children were compassionate and understanding of others with chronic illness.

Finding 2: Biographical Disruptions and their Association with Psychological Distress The previous sections described the disruptions to the life course that a chronic illness could produce. The results demonstrated that the biographical disruptions might also impact people’s psychosocial wellbeing. Interviewees (n = 32) described the impact of experiencing repeated disruptions on their “mental space,” highlighting the resulting anxiety, sadness, depression, grief, and feeling of being left behind by their peers. I argue that based on my data, it does not appear that these repeat disruptions become normalized over time.

Anxiety – “Always waiting for the bomb to drop” Addison, age 27, worked full time as an academic advisor. In her narrative, she explained the impact disruptions had had on generating anxious thoughts. Like many other participants, she worried about the next flare-up and future disruptions, saying:

…being in a flare because I was always waiting for the bomb to drop, and I was always like thinking like “Oh! Like today’s the day that my flare’s going to come back.” I think, even though I always had that fear, I also knew like you don’t know how many good days before another bad day, so [it was an] enjoy-it-while-it-lasts type of thing. Addison highlighted the tension she felt, waiting for the heavy burden or “bomb” to appear.

Other participants expressed the same feeling of waiting for the next bad thing to happen, health- wise. Adrianna, age 28, was married and on disability due to her worsening health. She described how disruptions from her chronic illness had led to an intense fear of “the world.” She stated:

I'm basically scared of the world. I mean, I'm scared of everything. That doesn’t manifest itself in me having like a legit agoraphobia or refusing to leave the house or anything. But I am constantly - something in the back of my mind - scared for the 73rd shoe to drop … I mean, I have the fear of, I have no trust that nothing is going to happen again … if that makes any sense. I absolutely believe that some other major-ish thing will happen as a

result of my Crohn’s. Either I will have another surgery [or] another body system will be affected. Addison’s fear of the next disruption is evident. Her experiences have eroded her trust and certainty in the future. Even in periods of remission with few or no disruptions, participants still reported a great feeling of anxiety that the disease would return at any time.

In this way, the anticipation of a reoccurrence could be worse than experiencing the flare- up itself, as Madeline, age 52, explained:

So I think, or, I’m in remission quite often. But then you just have to … always be prepared, because a flare can come up at the least expected time. So that feeling of anxiety and that feeling of just waiting for something bad to happen, kind of, it’s kind of, it’s overwhelming, you know … sometimes. The foreboding feeling of waiting for something bad to happen is a common and prominent theme throughout the participants’ narratives. One specific fear was having to undergo surgery to have an ostomy, or a “bag.” Natalie was a 28-year-old full-time store clerk. Natalie attached her anxiety to specific outcomes, such as getting an ostomy bag. In describing this anxiety, she said:

Yeah. I don’t, I mean, and the thought of having an ostomy scares me too. It’s like, “Am I going to wake up out of surgery with a bag?” So I don’t know. It definitely scares me. Like, I’m going to take some things and all of a sudden end up in the hospital with other [complications]? Am I going to not find something? Interestingly Natalie framed her anxiety over future disruptions and complications in terms of not finding a problem. As such, there were actually two fears at work: one, the fear that physicians would find a worsening disease; and two, that there was more disease that the doctors wouldn’t find. Many participants shared their anxiety over new and future health complications, describing a feeling of foreboding, or using a “waiting for the bomb to drop” metaphor for imminent CD complications.

Sadness and Depression – “A pessimistic little cloud” In addition to expressing anxiety and worry over future disruptions, participants also described the sadness or depression they felt while experiencing health-based issues. For

Katelyn, a 46-year-old radio producer on disability, the chronicity of her illness had become

“torture,” especially compared to the terminally ill, who had “a choice of saying, I’m done.” In her words:

We have pain. We have mental anguish. We go through a lot of crap. I just think that the terminally ill tend to go through it faster … “This is it. I’m not going to seek … any more treatment. I’m done.” We don’t have that choice. We don’t have a choice of saying “I’m done.” Some don’t, and then it ends up being torture. It doesn’t just end. It just becomes torture. I used [to have] that suicidal thought, because of ... yeah. I used to think the only way to make this end was to kill myself. The only way to make the pain stop. I would look at people and go: What is it like not to be in pain? What is that like to not have a pain [in] your body? To not worry about every time you go out? Whether or not you are going to be super tired or in pain by the end of the day? To not worry about that, or where the fucking bathroom is? I know where every damn bathroom is within a 100 miles radius of my town! As the narrative shows, having a chronic illness, one that constantly demands attention and care, can take a toll on one’s mental space. The continual disruptions caused by having a chronic illness appear to have had detrimental effects on participants’ mental wellbeing.

Sadness, depression, and even anger were prominent themes in these narratives. Brittany, age 27, was single and working full time as a medical assistant. She described the anger she felt toward her illness for causing her “issues,” the disruptions to both her daily life and her efforts to meet life-course milestones. She discussed her internal self-talk when she experienced a flare-up:

Then it is like a very large piece that feels really angry towards [the illness], and [is] really disassociated from it. Like, I can’t stand, like, all it does is give me issues. It feels kind of like an abusive relationship where like I can’t escape from it … But then when it comes to my internal self-talk, and just especially if I’m not … let’s say I’m having a flare or something is failing … I go really quickly to the, like, “Yet again my body is

disappointing me. Yet again it is not [functioning correctly].” I feel like I have a pretty big chunk of stuff to work through personally. The feeling that “my body is disappointing me” is a prominent theme throughout these descriptions of biographical disruption.

At points, the burden of disease can be too much. Gary, age 44, was divorced and on disability from his job as a general manager. He summed up the burden he felt as a result of repeat biographical disruptions from CD. He shared about a number of the aspects of his life that

CD had “destroyed,” including his sanity, body, relationships, and mental health, stating:

This disease is the worst. It destroys everything: your sanity, your body, your very being. [It] even destroys relationships. Even if they say you’re not a burden, you are. The constant pain, the not knowing how you’re going to feel minute by minute, it destroys your memory so you no longer [are] the person you were. It makes you think you’re crazy. I’m sick. No one else believes me. I don’t show signs of being sick. This disease makes you want to suck the end of a rifle because you know you have no future. You will never be the person you were. The drugs to help you cost too much. They don’t work. They fuck you up in other ways. This disease is the end of me. I know it. Gary, like Katelyn, had contemplated suicide. He saw no future with CD, because of the additional complications and disruptions.

The theme of an uncertain future was common among most participants (n = 28), while contemplating suicide was less frequent (n = 6). Andrea, age 25, spoke of experiencing multiple episodes where her illness disrupted her decision to pursue graduate school and parenthood. She described her internal dialogue when planning for the future while living with a chronic illness, stating:

Interviewer: Yeah. Can you share how your depression comes in with Crohn’s?

It’s a pessimistic little cloud that kind of sits over it. So it’s like I’m so excited about this and this. Or wait. I probably can’t even do that anyways because I’m going to be sick. That’s like a typical dialogue in my head. Yes, exactly like: “Oh, I really want to go on

this vacation, Ha Ha. That’s funny. You’re gonna be ill, so don’t even bother spending the money.”

Andrea said she no longer made plans to take trips or spend money because she believed she would always end up being sick, having to cancel, and wasting the money. Past experiences with disruptions and missed plans informed her view of an uncertain future, one that largely depended on a precarious health status.

Melissa, age 46, described struggling with depression and anger because she could not cope with being “sick all the time.” In her words:

Because I started getting real [sick], I started having real problems with depression because I didn’t like being sick all the time … The fact that my life has changed so much in such a short period of time due to this, it was extremely, like I had real anger issues about it for a while, too. You know, I was kind of going back and forth between depression and anger, basically. In the narrative above, Melissa described how dealing with the chronicity of CD made it difficult to cope. As a result of the repeat disruptions from CD, she experienced both depression and anger. Overall, participants recounted having a difficult time dealing with the chronic, repeated disruptions from the illness. In addition to feeling anxiety over another future flare-up, they also reported feeling increased sadness, depression, and/or anger over not being able to accomplish normal tasks and complete life course milestones.

Grief

Interestingly, participants (n = 18) reported feeling grief and mourning as a direct result of their illness and the consequent disruptions. Brittany, age 27, shared her experience with grief and

how she perceived her illness as holding her back from doing what she wanted to with her life. In her words:

Every time I try and [deal with the] grief and like get to a better place with it, it just gives me another issue and another. So I feel like I’m starting to kind of chip away a lot of the self-hatred and disgust and frustration … I think a lot of the emotions are more around [the] grief of like: "This is nothing [like] what I want" and "This is getting in my way of whatever, our step five" or "This is getting in my way … I had to cancel clients or social plans [and] that’s not fair,” [or] "This is getting in my way … I don’t want to have to spend time [visiting] like every other surgeon" [and] "This is annoying." I think just letting there be room for that frustration and disappointment [is important], but it is hard. Like many other participants, Brittany tried to allow herself time and space to grieve and deal with negative emotions. Her narrative revealed themes of frustration and feeling held back or left behind.

Other participants experienced grief as a part of accepting the disruptions caused by having a chronic illness. Molly, age 28, explained how she cycled through stages of anger, grief, and acceptance whenever there was a major disruption in her life, such as hospitalization, surgery, or a missed milestone:

I’ve gone through the grief stage. I’ve gone through the anger stage. But at the same time, I feel like the grief and the anger thing kind of, and the acceptance thing kind of go in a circle, in like a cycle, because I feel great. I’m like yes, okay, great … But I’m not there. Sometimes I have the “why me?” Sometimes I am like “what in the world did I do that was so bad?” But I feel like it’s still a constant struggle for me. Participants often discussed their struggle with mental health issues as a consequence of chronic illness by framing conflicts as current and ongoing battles. With each recurrent disruption, this cycle of anxiety, anger, depression, and grief begins again, making it difficult to normalize the disruptions.

Feeling Left Behind

Participants (n = 17) also reported feeling left behind, an emotion closely related to the grief they expressed. Feelings of being left behind emerged as a result of social comparisons to healthy peers who participants viewed as moving forward with their lives, while they, themselves, were trapped managing the demands of chronic illness. Adriana, age 28, found it difficult to watching her peers get jobs and letters of acceptance to graduate school. She also witnessed her husband’s blossoming career, with all of its many possibilities for growth in the future. These contributed to her feelings of being left behind. In her words:

I have watched, now, the emails come in … Most of my close friends have defended [their dissertations] within the last few months, and it’s really hard because the difference between me and them is that I lost the genetic lottery. So that’s part of that difficulty, too. [It] is, I am watching my husband pursue two careers that he would be really excellent at, or possibly a third fusion career [at which] he would also be really excellent. So I am watching … him having, in seeing him in a spectrum of opportunities while, you know, I clean the toilets when I feel like I am going to throw up because then at least I can throw up into a clean toilet. Similar to grief, Adriana felt left behind by her peers because her illness held her back from pursuing her goal of finishing her PhD in neuroscience. This loss was highlighted by her husband’s opportunities at school and work.

Eva, a single 26-year-old photographer, shared similar emotions. Because of complications and disruptions from CD, Eva decided not to relocate to Los Angeles (LA) for her film career, though her peers did move to the new city. In her words:

But yeah, it was really sad. Just, it’s still … sad because I see like all [of] my peers out in LA and Hollywood, and they are working on big sets and doing all [these] other things that I dreamed that I would do. So for me, that was a big decision that I had to make, like, staying behind. Similarly, Brittany, age 27, stated: I mean, it still takes a huge toll. I think when it got, like, to the later years in college, everyone my age is graduating, all my friends from high school are graduating … It felt like - and I am - a year and a half behind. Like, that’s not fair.

Both Eva and Brittany felt as if they were left behind by their peers as a result of the disruptions they endured from CD. For participants, feeling left behind evoked sentiments of being

“abnormal” because they were outside of the normative schedule for education and career milestones.

Discussion

Chronic illness As a Disruptive Force

First, consistent with previous research (Lindsay, 2009; Richardson et al., 2006; Sinding and Wiernikowski, 2008; Larsson and Grassman, 2012), I find evidence for and argue that the recurrent nature of chronic illness is troubling for participants even though they have long diagnostic histories with the illness. I also argue that normalization of a chronic illness, such as

CD, is not likely, as participants may not be able to compartmentalize the impact of the disruptions. My findings in this chapter contradict Williams’ (2000) conceptualization of normality in chronic illness-- that the repeat disruptions become commonplace and expected with a longer disease course. In contrast, I find that most participants in my study did not have an attitude of normalization toward their Crohn’s Disease, despite an average length of diagnosis of

13 years in the sample. My findings make it difficult to conclude that participants would become accustomed to some of the losses and challenges Crohn’s Disease poses--even in less severe cases of the illness. Even those participants who had achieved remission before in the past, or were currently in remission, still experience disruptions to daily living and were not symptom- free, or worry free. These findings are consistent with Tusson, Pilnick & Roy’s (2015) findings that show patients still had worries of disease reoccurrence during remission from breast cancer.

In both my study and Tusson and colleagues’ study (2015), participants still experience anxiety

even in remission because of uncertainty and fear of the disease returning. While my population had a different chronic illness, participants experience a very similar significant psychosocial burden due to the multiple challenges of CD. These challenges include its incurability, unpredictability, symptom severity, as well as surgery and medication side effects (e.g. Mikocka-

Walus et al., 2016; Panara et al., 2014; Graff et al., 2006; Nahon et al., 2012; Mittermaier et al.,

2004).

Second, the pervasive nature of these illness disruptions in my study signal to participants that they are not ‘normal’. Williams (2000) argued that with increased length of diagnosis comes normality and adjustment to the vicissitudes of a chronic illness. In other words, people with a chronic illness become accustomed to the repeat disruptions over time. My data show long-term patterns of disruption rather than biographical flow or normality. Much like Williams’ (2000) work on the nature of chronic illness disruptions, my findings also show that people living with a chronic illness face many types of uncertainty (diagnostic, symptomatic trajectory) resulting from disruptions. Participants in my study also describe all of these tangible feelings of uncertainty in their descriptions of anxiety and depression. I suggest that these feelings of uncertainty may partially explain participants’ self-described poor mental health—feelings of anxiety, sadness, depression, grief and feeling left behind their peers. Future research should attempt to detangle the impact of uncertainty and disruption on mental health. I expect that both the uncertainty and degree of disruption impact the prevalence of mental health symptoms in people living with Crohn’s.

Biographical Order and Life Course Perspectives on Illness

Participants’ self-described anxiety leaves them waiting for another disruption. The next disruption is both anticipated and feared, much like Reeve and colleagues describe (2010). Also,

similar to Liamputtong and Suwankhong (2015), the narratives in this study reveal shock, fear and anxiety in response to biographical disruptions. Narratives that describe grief and depression or sadness reflect uncertainty and a lack of biographical order, or are in a “biographical limbo”

(Lindsay, 2009). For example, my data show that chronic illness disrupts continuous higher education. Students may drop out in order to take care of their health. However, this time off can mean high medical bills to pay or the repayment of student loans. Some participants had to go back to work, instead of returning to college, in order to make money to pay medical bills. The untimely entrance to the workforce before finishing higher education is just one example of an out-of-sequence transition. The literature shows that untimely transitions (either too early or too late) can disrupt subsequent life course milestones (George 1993; Elder, Johnson, and Crosnoe

2003). The ability of the life course perspective (LCP) to link together two spheres or dimensions, such that experiences in one dimension or sphere carries “significant implications” for individuals’ experiences in another sphere. So, disruptions to physical well-being are tied to mental well-being in this dissertation. Also, spheres of work and illness are intertwined and my results highlight how illness disruptions complicate work trajectories and may “derail” careers.

Similarly, issues of health legitimacy impact functioning at work. In this way, the LCP provides an understanding that social dimensions are linked and interdependent, such that gains or losses in health have implications for work, family and education spheres. To navigate these spheres and different trajectories, individuals use age-linked expectations. Research shows that these maps serve to organize one’s life and other’s linked lives (see Settersten & Hagestead, 1996a,

1996b). I think that experiencing an episodic chronic illness like CD upset our reality of how one expects their life course to unfold. Participants used the word “derail” to describe the impact of illness disruptions on their career, for example. Part of the mental health problems people report

may be due to illness disruptions that change the life course and cause out-of-sequence transitions. These disruptions creates a disconnect between what we expect to happen in our life course versus the reality of biographical disruptions interrupting structures of everyday life. This disconnect between expectations and reality can also make lives asynchronous, or out-of-sync.

When lives are out-of-sync, relationships are often “strained in significant ways” (Settersten,

2003:27).

Biographical Disruptions and Loss

Much like the works of Thoits (1983) and Pearlin and colleagues (2005), my findings also show how illness disruptions are temporary events that are undesired and involuntary having deleterious effects on people’s well-being. My findings concur with Bury’s (1982) work asserting that chronic illness is a disruptive force that upsets our assumptions of normality in day-to-day life. Complimenting these previous findings, I assert that chronic illness also brings about uncertainty in how to move forward to achieve social milestones following an illness flare or new impairment. My results also show aspects of untimely illness, i.e. when diagnosis does not meet age-related expectations. For example, the onset of Crohn’s disease in early adulthood or adolescence can be viewed as an “untimely breach” (Kirkpatrick et al., 2018) to the expected order of life course events. The distressing timing of illnesses, combined with repeat disruptions over time make Crohn’s Disease particularly disruptive to people’s taken-for-granted assumptions about daily living and their ability to execute normal social activities. Following my

results, I conclude that painful disruptions undermine people’s taken-for-granted assumptions

about who gets sick, at what age, and at which point(s) in the life course.

How my findings can be extended to other populations with chronic illnesses is an

interesting topic for future research. In some disabilities (e.g. traumatic injury), there isn't a

resulting progression of symptoms or uncertainty of future disablement. Wendell (2013)

describes this state as the healthy disabled. In the case of CD, there is illness and impairment

meaning they are the unhealthy disabled. Given that Crohn's-related symptoms are irregular and

even appear in remission (Komperod et al., 2018), it is likely that this population experiences

uncertainty to a higher degree. It would be interesting to see how people experience biographical

disruptions during periods of clinical remission. For example, some participants in my study still

experienced periodic disruptions or Crohn’s symptoms after their physician told them they were

in remission. Some research even distinguishes between symptom remission and clinical

remission (see Zallot et al., 2013.) I expect that people living with Crohn’s would still experience

anxiety and uncertainty over when the next disruption was coming in both cases of remission.

My data shows some evidence that participants worry about the return of CD when they

also experience partial or clinical remission with occasional symptoms. Further investigation is

needed to examine people’s coping and sense of coherence when in clinical remission, yet still

experience symptoms. I expect that many people in clinical remission still experience depression

and anxiety. Experiencing depression during clinical remission might signal a longing for deep

remission, where there are no symptoms. Also, experiencing anxiety might occur because they

are anxious for the next round of symptoms to occur. Returning symptoms during clinical

remission may signal that the disease is active again, and the person is no longer in remission. I

suspect that the experiences of remission states in CD and IBD would mirror similar experiences of people living with breast cancer or prostate cancer, for example.

These biographical disruptions can also bring loss (physical, mental, social, economic) to the forefront of people’s experience. Such losses and the accompanying uncertainty, make chronic illness a disruptive force that impacts life course decisions, for example when or how to pursue a career trajectory. By combining a life course perspective with biographical disruption, I add to the current literature on chronic illness by highlighting the uncertainty and interference that chronic illness flares bring to people’s life course. Importantly, my findings show that chronic illness creates biographical disruptions to the life course which are physical, mental and social. I determine that people living with Crohn’s disease experience mental and social consequences resulting from Crohn’s such as increased risk of developing anxiety and depression in adults, similar to findings by (Ananthakrishnan et al., 2013.) Other research using adolescents with CD show that younger kids suffer an increased risk of anxiety and depression later on in life (see Loftus Jr. et al., 2011). I conclude, based on my findings that these disruptions can contribute to physical and social disability. My findings also show that disruptions at certain points in the life course are one way Crohn’s impacts one or more areas of life.

Significance and Future Research

Biographical disruptions and Life Chances

Participants in my study struggle to deal with painful disruptions (e.g, abdominal pain, bleeding, strictures, bowel obstructions, fatigue, insomnia, body aches, etc.) which impacted their social lives, work lives and family lives. These disruptions are clear and candid exemplars

that having a chronic illness like Crohn’s affects one’s life chances. The life chances approach suggests that status is not entirely achieved, but to some extent, ascribed (Jones, 1975). As

Weber (1905) describes, ascriptive factors such as race/ethnicity, gender, and class of origin can all affect one's life chances. I argue, along with other scholars, that disability should be considered as an ascriptive quality that directly impacts life chances, such as educational attainment (Harvey et al., 2019), lifetime earnings or income (El-Matary et al., 2017), .

According to Meyer and Mok (2018), ten years after disability onset, those with chronic and severe disability conditions have seen their earnings decline by about 55%. Additionally, 66 percent of these most disabled individuals do not work ten years after onset (2018). Despite the various government programs available, Meyer and Mok (2018) estimate about one-fifth of people with disabilities have incomes below the poverty line in the long term.

Life chances are affected by a number of factors. Research shows that students with active Crohn's have a greater difficulty with transition to college than their healthy peers, and young adults with chronic medical conditions reach significantly lower levels of educational attainment than their peers (Adler et al., 2008). My findings add to this and show how biographical disruptions delay finishing an educational path or contribute to a student dropping out entirely. Participants expressed anxiety and depression associated with their illness disruptions, which I expected to find. Surprisingly, participants expressed anger, frustration and grief over being left behind their peers. They were aware of the losses they were experiencing and use the word ‘derail’ often to describe the changes to their trajectories. My findings show a complex emotional response to not meeting normative expectations of how they think their life course should unfold. Consequently, future research into the impact of chronic illness on life chances should also examine changes in mental health.

Future studies on biographical disruption

Future studies should quantitatively measure the impact on uncertainty, illness flares, and pain on patient’s mental health, incorporating standard mental health outcome measures. I think that part of the impact of an illness disruption is the pain associated with it. In future studies, scholars should explore what impact, if any, physical pain has on the mental health of those with

CD and other chronic illnesses. I suspect the agony of dealing with physical pain takes a mental toll. In fact, recent research focuses on the relationship between pain and mental health

(Demyttenaere et al., 2007; Gatchel, 2004; Rippentrop et al., 2005; Schnittker, 2004). However, the literature does not link pain and/or mental health outcomes to specific biographical disruptions in the life course. I expect that some of the effects of illness disruptions on mental health may be a relationship between the painful recurrent flares and poor mental health. In the current literature, pain and depression are often found to coexist in patients with chronic disease, and there is an increasing body of evidence in the literature suggesting that the two are interrelated (Cox et al, 2017; Bair, Robinson, Kanton & Kroenke, 2003; Schnittker, 2004).

Future inquiries should ask which depressive symptoms are associated with physical pain. Like existing literature on pain and mental health (Schnittker, 2004), my findings support the relationship between experiencing pain from Crohn’s (abdominal cramps, bleeding, diarrhea, strictures, bowel obstructions or twisting) and reporting feelings of uncertainty, anxiety, sadness and depression. Similarly, Persoons and colleagues (2005) show that major depressive disorder is the most common psychiatric diagnosis in Crohn's disease. One study shows that the majority of patients and their treating physicians attribute an important role to psychosocial factors in the clinical exacerbation of symptoms (Mingel & Drossman, 2001).

Future studies including investigation of biographical disruptions should also consider mental health outcomes and identity appraisals. Future inquiries should ask what are the identity gains, as well as losses people with a chronic illness experience over the life course. For example, Abspring (2000) showed that many women reported gains in new identity while living with fibromyalgia, another invisible chronic illness. As such, longitudinal surveys that measure these progressive losses and gains would be beneficial to future studies. Further, economic hardships, such as insurance coverage, likely impacts biographical uncertainty. Also, illness disruptions differentially impact people living with a chronic illness that are already in socially disadvantaged households. As such, SES and insurance coverage are important factors to consider when examining the impact of illness disruptions on mental health and self-identity.

Limitations

This study has a few limitations worth noting. While the study sample is diverse in terms of length of diagnosis, disability status, and education level, it is not racially diverse. Future studies should include more people of color who live with CD. Racial differences exist regarding how and when people choose to meet life course milestones (see Edin & Kefalas, 2011). Also, there are racial differences in terms of social support and kinship networks (Dominguez &

Watkins, 2003) that may mitigate the psychological distress people living with a chronic illness are likely face. Additionally, people from different racial backgrounds may manifest distress differently. Taking an intersectional approach, one that includes the impacts of race, class, and gender, would likely address the resources and coping strategies that impact how illness disruptions are interpreted (i.e., whether or not one is distressed following a disruption).

Finally, I considered the possibility of sample bias in my study. I do not believe that the sample is biased in terms of severity of illness (i.e., that people who were sicker were more likely

to be in my sample). However, my sample was biased by my sampling method. The majority of the data came from sampling online social media groups. This excluded people living with CD but not using online support groups on that particular social media platform. There may be a selection bias for those who choose to participate in online research, as well. Numerous scholars have noted that women are more likely than men (Curtin et al., 2000) and non-white participants

(Curtin et al., 2000; Groves, Singer, & Corning, 2000) to respond to online surveys.

REFERENCES Abbey, S. E., De Luca, E., Mauthner, O. E., McKeever, P., Shildrick, M., Poole, J. M., … Ross, H. J. (2011). Qualitative interviews vs standardized self-report questionnaires in assessing quality of life in heart transplant recipients. The Journal of Heart and Lung Transplantation, 30(8), 963–966. Alderson, S. L., Foy, R., Glidewell, L., & House, A. O. (2014). Patients understanding of depression associated with chronic physical illness: a qualitative study. BMC Family Practice, 15(1), 37. Alexias, G., Savvakis, M., & Stratopoulou, I. (2016). Embodiment and biographical disruption in people living with HIV/AIDS (PLWHA). AIDS Care, 28(5), 585–590. Anderson, B. J., Brackett, J., Snoek, F. J., & Skinner, T. C. (2005). Diabetes in children. Psychology in Diabetes Care, 2, 1–25. Banks, J., & Prior, L. (2001). Doing things with illness. The micro politics of the CFS clinic. Social Science & Medicine, 52(1), 11–23. Bell, S. L., Tyrrell, J., & Phoenix, C. (2016). Ménière’s disease and biographical disruption: Where family transitions collide. Social Science & Medicine, 166, 177–185. Bennebroek Evertsz’, F., Thijssens, N. A. M., Stokkers, P. C. F., Grootenhuis, M. A., Bockting, C. L. H., Nieuwkerk, P. T., & Sprangers, M. A. G. (2012). Do Inflammatory Bowel Disease patients with anxiety and depressive symptoms receive the care they need? Journal of Crohn’s and Colitis, 6(1), 68–76. Bernstein, D. (2018). Essentials of psychology. Cengage Learning. Bury, M. (1982). Chronic illness as biographical disruption. Sociology of Health & Illness, 4(2), 167–182. Carricaburu, D., & Pierret, J. (1995). From biographical disruption to biographical reinforcement: the case of HIV-positive men. Sociology of Health & Illness, 17(1), 65–88. Castleberry, A. (2014). NVivo 10 [software program]. Version 10. QSR International; 2012. American Journal of Pharmaceutical Education, 78(1). Charmaz, K. (1983). Loss of self: a fundamental form of suffering in the chronically ill. Sociology of Health & Illness, 5(2), 168–195. Charmaz, K. (1993). Good days, bad days: The self in chronic illness and time. Rutgers University Press. Charmaz, K. (2014). Constructing Grounded Theory. SAGE. Clarke, J. N., & James, S. (2003). The radicalized self: the impact on the self of the contested nature of the diagnosis of chronic fatigue syndrome. Social Science & Medicine, 57(8), 1387– 1395.

Curtin, R., Presser, S., & Singer, E. (2000). The effects of response rate changes on the index of consumer sentiment. Public Opinion Quarterly, 64(4), 413–428. Dominguez, S., & Watkins, C. (2003). Creating networks for survival and mobility: Social capital among African-American and Latin-American low-income mothers. Social Problems, 50(1), 111–135. Dumit, J. (2006). Illnesses you have to fight to get: Facts as forces in uncertain, emergent illnesses. Social Science & Medicine, 62(3), 577–590. Dyck, I. (1995). Hidden geographies: the changing lifeworlds of women with multiple sclerosis. Social Science & Medicine, 40(3), 307–320. Edin, K., & Kefalas, M. (2011). Promises I can keep: Why poor women put motherhood before marriage. Univ of California Press. Elder, G. H. (1975). Age Differentiation and the Life Course. Annual Review of Sociology, 1, 165–190. Elder, G. H. (1994). Time, human agency, and social change: Perspective on the life course. Social Psychology Quarterly, 57, 4–4. Elder, G. H. (1998). The life course as developmental theory. Child Development, 69(1), 1–12. Elder Jr, G. H. (1985). Life course dynamics: trajectories and transitions 1968-1980. Elder Jr, G. H. (1994). Time, human agency, and social change: Perspectives on the life course. Social Psychology Quarterly, 4–15. Elder Jr, G. H. (1999). Children of the Great Depression: Social change in life experience . Retrieved from http://psycnet.apa.org/psycinfo/1998-06389-000 Elder Jr, G. H., Johnson, M. K., & Crosnoe, R. (2003). The emergence and development of life course theory. Retrieved from http://link.springer.com/chapter/10.1007/978-0-306-48247-2_1 Elder Jr, G. H., Van Nguyen, T., & Caspi, A. (1985). Linking family hardship to children’s lives. Child Development, 361–375. Faircloth, C. A., Boylstein, C., Rittman, M., Young, M. E., & Gubrium, J. (2004). Sudden illness and biographical flow in narratives of stroke recovery. Sociology of Health & Illness, 26(2), 242–261. https://doi.org/10.1111/j.1467-9566.2004.00388.x Frank, A. (1995). The wounded storyteller: Body, illness. Giele, J. Z., & Elder, G. H. (1998). Life course research: Development of a field. Methods of Life Course Research: Qualitative and Quantitative Approaches, 5–27. Graff, L. A., Walker, J. R., & Bernstein, C. N. (2009). Depression and anxiety in inflammatory bowel disease: A review of comorbidity and management: Inflammatory Bowel Diseases, 15(7), 1105–1118. https://doi.org/10.1002/ibd.20873

Gregory, S. (2005). Living with chronic illness in the family setting. Sociology of Health & Illness, 27(3), 372–392. Groves, R. M., Singer, E., & Corning, A. (2000). Leverage-saliency theory of survey participation: description and an illustration. The Public Opinion Quarterly, 64(3), 299–308. Grue, J. (2016). ILLNESS IS WORK: Revisiting the concept of illness careers and recognizing the identity work of patients with ME/CFS. Health:, 20(4), 401–412. Guthrie, E., Tomenson, B., & Creed, F. (2002). Psychological Disorder and Severity of Inﬂammatory Bowel Disease Predict Health-Related Quality of Life in Ulcerative Colitis and Crohn’s Disease. 97(8), 6. Hannum, S. M., & Rubinstein, R. L. (2016). The meaningfulness of time; Narratives of cancer among chronically ill older adults. Journal of Aging Studies, 36, 17–25. https://doi.org/10.1016/j.jaging.2015.12.006 Häuser, W., Janke, K.-H., Klump, B., & Hinz, A. (2011). Anxiety and depression in patients with inflammatory bowel disease: comparisons with chronic liver disease patients and the general population. Inflammatory Bowel Diseases, 17(2), 621–632. Jeppsson Grassman, E., Holme, L., Taghizadeh Larsson, A., & Whitaker, A. (2012). A long life with a particular signature: life course and aging for people with disabilities. Journal of Gerontological Social Work, 55(2), 95–111. https://doi.org/10.1080/01634372.2011.633975 Katerndahl, D. A., & Parchman, M. (2002). The ability of the stress process model to explain mental health outcomes. Comprehensive Psychiatry, 43(5), 351–360. Kleinman, A. (1995). Pitch, picture, power: The globalization of local suffering and the transformation of social experience. Ethnos, 60(3–4), 181–191. Knowles, S., Andrews, J. M., & Porter, A. (2018). Predictors of Impaired Mental Health and Support Seeking in Adults With Inflammatory Bowel Disease. Gastroenterology Nursing, 41(1), 38–46. Kvaal, K., Halding, A.-G., & Kvigne, K. (2014). Social provision and loneliness among older people suffering from chronic physical illness. A mixed-methods approach. Scandinavian Journal of Caring Sciences, 28(1), 104–111. Larsson, A. T., & Grassman, E. J. (2012). Bodily changes among people living with physical impairments and chronic illnesses: biographical disruption or normal illness? Sociology of Health & Illness, 34(8), 1156–1169. Leveälahti, H., Tishelman, C., & Öhlén, J. (2007). Framing the onset of lung cancer biographically: narratives of continuity and disruption. Psycho-Oncology, 16(5), 466–473. Liamputtong, P., & Suwankhong, D. (2015a). Therapeutic landscapes and living with breast cancer: The lived experiences of Thai women. Social Science & Medicine, 128, 263–271.

Liamputtong, P., & Suwankhong, D. (2015b). Therapeutic landscapes and living with breast cancer: The lived experiences of Thai women. Social Science & Medicine, 128, 263–271. Lindsay, S. (2009). Prioritizing illness: lessons in self-managing multiple chronic diseases. Canadian Journal of Sociology, 34(4), 983–1002. Lindsey, E. (1997). Experiences of the chronically ill: a covert caring for the self. Journal of Holistic Nursing, 15(3), 227–242. Livneh, H., & Antonak, R. F. (2005). Psychosocial adaptation to chronic illness and disability: A primer for counselors. Journal of Counseling & Development, 83(1), 12–20. Llewellyn, H., Low, J., Smith, G., Hopkins, K., Burns, A., & Jones, L. (2014). Narratives of continuity among older people with late stage chronic kidney disease who decline dialysis. Social Science & Medicine, 114, 49–56. https://doi.org/10.1016/j.socscimed.2014.05.037 Mikocka-Walus, A., Knowles, S. R., Keefer, L., & Graff, L. (2016). Controversies revisited: a systematic review of the comorbidity of depression and anxiety with inflammatory bowel diseases. Inflammatory Bowel Diseases, 22(3), 752–762. Millen, N., & Walker, C. (2000). Overcoming the stigma of chronic illness: Strategies for ‘straightening out’a spoiled identity. Sociological Sights/Sites, TASA 2000 Conference, Adelaide: Flinders University. December, 6–8. Mittermaier, C., Dejaco, C., Waldhoer, T., Oefferlbauer-Ernst, A., Miehsler, W., Beier, M., … Moser, G. (2004). Impact of depressive mood on relapse in patients with inflammatory bowel disease: a prospective 18-month follow-up study. Psychosomatic Medicine, 66(1), 79–84. Nagin, D. S., Pagani, L., Tremblay, R. E., & Vitaro, F. (2003). Life course turning points: The effect of grade retention on physical aggression. Development and Psychopathology, 15(2), 343– 361. Nahon, S., Lahmek, P., Durance, C., Olympie, A., Lesgourgues, B., Colombel, J.-F., & Gendre, J.-P. (2012). Risk factors of anxiety and depression in inflammatory bowel disease. Inflammatory Bowel Diseases, 18(11), 2086–2091. Nigro, G., Angelini, G., Grosso, S. B., Caula, G., & Sategna-Guidetti, C. (2001). Psychiatric predictors of noncompliance in inflammatory bowel disease: psychiatry and compliance. Journal of Clinical Gastroenterology, 32(1), 66–68. NIMH. (2017). NIMH » Depression. Retrieved April 27, 2019, from https://www.nimh.nih.gov/health/topics/depression/index.shtml Nowakowski, J., Chrobak, A. A., & Dudek, D. (2016). Psychiatric illnesses in inflammatory bowel diseases-psychiatric comorbidity and biological underpinnings. Psychiatr Pol, 50(6), 1157–1166. Pearlin, L. (2002). Some institutional and stress process perspectives on religion and health. Psychological Inquiry, 13(3), 217–220.

Pearlin, L. I. (2009). The life course and the stress process: Some conceptual comparisons. Journals of Gerontology Series B: Psychological Sciences and Social Sciences, 65(2), 207–215. Pound, P., Gompertz, P., & Ebrahim, S. (1998). Illness in the Context of Older Age: The Case of Stroke. Sociology of Health & Illness, 20(4), 489–506. https://doi.org/10.1111/1467-9566.00112 Raheim, & Haland, W. (2006). Lived experience of chronic pain and fibromyalgia: Women’s stories from daily life. Qualitative Health Research, 16(6), 741–761. Raymond-Barker, P., Griffith, G. M., & Hastings, R. P. (2018). Biographical disruption: Experiences of mothers of adults assessed for autism spectrum disorder. Journal of Intellectual & Developmental Disability, 43(1), 83–92. Richardson, J. C., Ong, B. N., & Sim, J. (2006a). Remaking the future: contemplating a life with chronic widespread pain. Chronic Illness, 2(3), 209–218. Roberts, K., & Clarke, C. (2009). Future disorientation following gynaecological cancer: Women’s conceptualisation of risk after a life threatening illness. Health, Risk & Society, 11(4), 353–366. https://doi.org/10.1080/13698570903013623 Rönkä, A., Oravala, S., & Pulkkinen, L. (2003). Turning points in adults’ lives: The effects of gender and the amount of choice. Journal of Adult Development, 10(3), 203–215. Rossen, C. B., Buus, N., Stenager, E., & Stenager, E. (2017). Identity work and illness careers of patients with medically unexplained symptoms. Health, 1363459317739440. Sanderson, T., Calnan, M., Morris, M., Richards, P., & Hewlett, S. (2011). Shifting normalities: interactions of changing conceptions of a normal life and the normalisation of symptoms in rheumatoid arthritis: Changing conceptions of a normal life and rheumatoid arthritis. Sociology of Health & Illness, 33(4), 618–633. https://doi.org/10.1111/j.1467-9566.2010.01305.x Shriver, T. E., & Waskul, D. D. (2006). Managing the uncertainties of Gulf War illness: The challenges of living with contested illness. Symbolic Interaction, 29(4), 465–486. Sinding, C., & Wiernikowski, J. (2008). Disruption foreclosed: older women’s cancer narratives. Health: An Interdisciplinary Journal for the Social Study of Health, Illness and Medicine, 12(3), 389–411. https://doi.org/10.1177/1363459308090055 Sontag, S. (1988). AIDS ands its metaphors. NewYork: Farrar, StrausandGiroux. Stone, S. D. (1995). The myth of bodily perfection. Disability & Society, 10(4), 413–424. Tiwari, N., Tiwari, S., Thakur, R., Agrawal, N., Shashikiran, N. D., & Singla, S. (2015). Evaluation of treatment related fear using a newly developed fear scale for children:“Fear assessment picture scale” and its association with physiological response. Contemporary Clinical Dentistry, 6(3), 327. Turney, K. (2014). Stress proliferation across generations? Examining the relationship between parental incarceration and childhood health. Journal of Health and Social Behavior, 55(3), 302– 319.

Van Langenberg, D. R., & Gibson, P. R. (2010). Systematic review: fatigue in inflammatory bowel disease. Alimentary Pharmacology & Therapeutics, 32(2), 131–143. Voinov, B., Richie, W. D., & Bailey, R. K. (2013). Depression and chronic diseases: it is time for a synergistic mental health and primary care approach. The Primary Care Companion for CNS Disorders, 15(2). Walters, A. (2017). The Impact of Psychosocial Factors on Chronic Disease. Retrieved from https://www.eatrightidaho.org/app/uploads/2016/11/pdf/w/Walters-Handout.pdf Ware, N. C. (1992). Suffering and the social construction of illness: The delegitimation of illness experience in chronic fatigue syndrome. Medical Anthropology Quarterly, 6(4), 347–361. Werner, A., & Malterud, K. (2003). It is hard work behaving as a credible patient: encounters between women with chronic pain and their doctors. Social Science & Medicine, 57(8), 1409– 1419. Williams, S. (2000). Chronic illness as biographical disruption or biographical disruption as chronic illness? Reflections on a core concept. Sociology of Health & Illness, 22(1), 40–67.

CHAPTER 5.

“My body is not lying to me”: Gaining Legitimacy in Patient-Provider Interactions

This chapter explores how people living with Crohn’s Disease (CD) experience delegitimation during their interactions with physicians. The narratives show that following such delegitimizing encounters, many participants questioned the legitimacy of their symptoms and, thus, their sanity. Ultimately, respondents used knowledge of their own bodies to justify their suffering as legitimate and refute the notion that they were “crazy.” The Wise Body is a source of truth when medicine fails to provide patients with concrete solutions to physical ailments. I discuss the social structures in medicine that contribute to the devaluation of persons living with invisible illnesses. Furthermore, I consider the eroding trust between physicians and patients in modern medicine, where many chronic illnesses have no cure. This study contributes to the literature of medical sociology by demonstrating the contested nature of CD. These findings add to the current research on and identification of ill people’s key concern of being believed and taken seriously as it relates to chronic illness generally, and CD specifically. I assert that delegitimation serves as a barrier to seeking future healthcare, and improving physician training may advance communication between physicians and patients. Introduction

When chronically ill individuals fail to convince physicians of the legitimacy of their illness experiences, patients may experience low self-esteem, devaluation, and a sense of dismissal that may “spoil” the ill person’s identity over time (Kleinman et al., 1995). In part, gaining legitimacy entails providing proof of suffering through outward symptoms, clinical signs, and tests. Individuals living with invisible and contested illnesses are therefore subject to delegitimation and disapproval in both clinical and social settings (e.g., Barker, 2009; Ware,

1992; Kleinman, 1992). Delegitimation is the withholding of legitimacy, or the act of making something illegitimate. In this research, delegitimation means denying the legitimacy of symptoms and/or suffering. Denying a patient legitimacy may result in individuals not receiving benefits, time off at work, or insurance coverage. 90

This chapter highlights the recurring theme of the struggle for power between patients and providers with regards to the credibility of symptoms and knowledge of the body. I use qualitative methods to addresses how persons with chronic illness experience delegitimation in clinical encounters, and their process of making sense of these negative experiences with physicians. Data were drawn from 35 interviews with individuals living with CD, a chronic inflammatory condition of the gastrointestinal tract characterized by intermittent flare-ups of pain, weakness, fatigue, cramping, and/or diarrhea. The causes of CD are not well understood.

Diet and stress may aggravate CD, but they do not cause the disease on their own. Recent research has suggested that heredity, genetics, and/or environmental factors may contribute to the development of CD.

Little is known about the illness experiences of people living with CD. While a body of literature exists on contested illnesses, little has been written on situations in which no clear medical diagnosis is given. There are relatively few studies on invisible illnesses, such as work examining CD patients’ subjective experiences (Casati et al., 2000). To organize and frame the present discussion of the search for legitimacy, I drew upon Foucault’s (1973) concept of the medical gaze and power/knowledge (1980).

Literature Review

Legitimation and Delegitimation of Suffering

Uncertainties regarding the legitimacy of suffering associated with certain chronic illnesses make it difficult for such individuals to receive a clear treatment plan, calling into question the ability of common medical practices to understand patients who face these problems. Gray’s (1999) notion of “postmodern medicine” underscores the ambiguities of many

modern illnesses. In the modern era, the effectiveness of health-care interventions has increased, but this has been accompanied by and growth in alienation and dissatisfaction, “perhaps because clinicians [have] moved from healing disease to treating disease” (Gray, 1999, p. 1551). Perhaps the dissatisfaction with doctors’ limitations in treating many chronic illnesses is best seen in popular bookshops, where evidence-based texts on gastroenterology are sold alongside tomes on colonic irrigation. In the age of managed care, with its emphasis on increased efficacy and shorter consultation times, the time allocated to healing has been reduced to such a point that little is possible, forcing patients to return with the same and other diseases, ultimately increasing costs (see Lipkin, 1996).

Whether a person's experience of illness is accepted by his or her community is tied to the moment the illness experience is transformed into sickness, when it becomes socially meaningful (Frankenberg, 1980). Individuals who experience bodily suffering but fail to gain credibility for their pain find themselves with illness experiences but without a legitimized sickness. They are neither “well” nor “sick,” and thus occupy a “liminal space” in society

(Dumit, 2006). The presentation of symptoms without empirical evidence (and presumably, objective signs of pathology) invariably obliges the increasingly subjective framing of a symptom or symptoms (Foucault, 1980). Physicians’ subjective framing of symptoms may follow the absence of observable signs, such that symptoms are attributed to personality characteristics, mental illness, malingering, or other morally charged assessments (Zola, 1966).

Medical Authority and Knowledge

Because symptoms are constructed as mere claims that must be corroborated with physical evidence, the absence of a clinical sign implies that the subjective symptom is imagined or otherwise fictional (Eccleston et al., 1997; Foucault, 1973). In the case of chronic back pain, for example, a patient who presents such pain for which no identifiable sign can be found is often swiftly dismissed as a malingerer or someone suffering from a psychosomatic or other type of mental illness (see Åbyholm & Hjortdahl, 1999; Borkan, Reis, Hermoni, & Biderman,

1995; Fretland & Holmen, 1990; Rhodes et al., 1999; Walker, Holloway, & Sofaer, 1999). Thus, the discussion of illness is founded on the conviction that it is only real if it reveals itself through pathology. Because patients’ subjective experiences are organized out of the diagnosis and treatment system, Foucault (1973) asserted that the power to diagnose and treat was embedded in the clinic and conferred upon the physician, an individual who had reserved the right to medical knowledge. Individuals’ experiencing illness are mere witnesses to the “medical gaze” and separate from their bodies, a conceptualization that invariably serves to delegitimize their experience.

Medical Gaze

In modern medicine, the diagnosis of disease consists of the examination and evaluation of the physical body. This process, in turn, serves as the ultimate judgement of the validity of that suffering as illness and, importantly, the associated validity of the sufferer. Importantly, the medical gaze divorces the body from patients’ personhood (Foucault, 1973). The objective, clinical study of the body contributes to the physician’s medical knowledge, but also increases his or her position of power over the body and the person who inhabits it. Importantly, Foucault explained (1973) that the dynamics of the clinical encounter included the metaphorical and literal exposure of the physical body. This leads to differing levels of knowledge, and thus amounts of

power. The physician’s medical knowledge and patient’s expert lay knowledge are informed, in part, by their lived illness experiences. In Western society, a key player in the legitimation of illness experience is the medical doctor, who serves as gatekeeper and is justified by references to the medical profession’s mission of observing, identifying, treating, and generally knowing signs of disease. A body is considered sick because the medical community, as influenced by structures of social power and governing knowledge, determines it to be so. As such, illnesses go undiagnosed and therefore unlabeled, considered instead as imaginary and delegitimized by the medical community.

Contested Illnesses

In the absence of scientific consensus about contested illnesses such as chronic fatigue syndrome (CFS), multiple chemical sensitivities, and Gulf War syndrome, physicians must make sense of competing accounts and develop practices for patient evaluation. Contested illnesses are debated within and beyond the medical community with regards to their bodily causes (Banks &

Prior, 2001). Such contested illnesses include CFS, fibromyalgia, chronic pain, and back pain, all of which have been discussed at length in the medical sociology literature. These illnesses are contested because there is a lack of consistent symptoms and patterns that serve to define the illness category, along with an absence of clinical confirmation of the disease. For example, CFS and fibromyalgia do not have clear physical manifestations, causes, or treatment approaches, and therefore can lead to the delegitimation of the patient’s experience (Banks & Prior, 2001; Barker,

2009; Dickson, Knussen, & Flowers, 2007; Sim & Madden, 2008; Ware, 1992). In contrast, CD has been a confirmed illness since 1932; it has a set of defining characteristics and treatments.

However, there are symptoms of CD that are invisible and not easily confirmed by clinical tests, such as chronic pain and fatigue. In this way, though CD is an accepted diagnosis, the literature

on contested illnesses can be used to inform this chapter’s discussion on delegitimation experiences.

The literature has shown a range of negative outcomes for those suffering from contested illnesses, and thus forced to fight for legitimacy and basic healthcare (Banks & Prior, 2001;

Dumit, 2006; Raheim & Haland, 2006; Shriver & Waskul, 2006; Ware, 1992; Werner &

Malterud, 2003). Participants struggling with chronic pain and fibromyalgia have reported precarious relationships with their “treacherous” bodies (Raheim & Haland, 2006). For such individuals, it is difficult work achieving a medical diagnosis and social recognition of their suffering (Werner & Malterund, 2003). Some have reported a history of being denied healthcare due to a lack of empirical evidence (Dumit, 2006) and been accused of faking their ailments

(Clarke & James, 2003; Kleinman, 1995; Ware, 1992). Shriver and Waskul’s (2006) study showed that veterans suffering from Gulf War illness experienced stigmatization and threats to their credibility, in addition to various assaults on their social status as veterans, questions regarding their emotional stability, and conflicts with their social relationships and selfhood.

Few studies have focused on the actions participants took following these threats to their credibility. Dumit (2006) discussed how individuals with CFS engaged in collective action in online discussion forums to advance patient advocacy for those with the illness. One study borrowed from anthropological work and framed delegitimation experiences as a micro-political struggle in which physical symptoms are contested and reframed as psychiatric symptoms (see

Banks & Prior, 2001). In this research, I ask: how do individuals respond to physicians denying that their suffering is legitimate?

Methodology

This chapter addresses how persons with chronic illnesses experience delegitimation in clinical encounters, and their process for making sense of these negative interactions with their physicians. I drew upon data from 35 semi-structured interviews with individuals diagnosed with

CD, who were living in the United States and were between the ages of 23 and 54. Participants were recruited through snowball sampling (n = 10) and convenience sampling (n = 25) from three different support group pages accessed through social media. On average, participants were

37 years old. The average length since diagnosis was 17 years, ranging between three and 34 years. The majority of participants were diagnosed in late adolescence (with a few exceptions), making the average age of diagnosis 21 years. See Table 1 for more of the sample’s demographics.

Interviews

Telephone interviews lasted between 45 minutes and three hours, with an average length of 90 minutes. They were primarily conducted over the telephone, due to participants’: 1) geographic locations (they lived in a total of 22 different states), and 2) health. Written consent was obtained prior to each interview. Participants were asked a series of open-ended interview questions pertaining to three life course domains, including: marriage, parenthood, and career.

Concerns regarding being seen as credible by their physicians was a major concern amongst respondents, thus warranting further investigation as the interview process continued. The interview questions were used as a guide; each participant directed their own narrative, selecting for discussion the experiences most salient to them.

Data Analysis

Charmaz’s (2012) suggestions regarding best practice when conducting qualitative research were followed in the present study. I conducted my data analysis while also collecting

additional interviews. Before importing the transcripts into the qualitative analysis software

Nvivo 11 (QSR International, 2012), I changed any identifying information about the participants. I began by open coding the interviews in a line-by-line process, making notes and memo-ing along the way. I continued to refine my codes and document the sub-codes into axial codes that supported the core construct of chronic illness experiences. These axial codes revealed overarching patterns throughout the data, which eventually evolved into a complete perspective on how chronic illness impacts one’s claim to legitimate illness behaviors and the difficulties persons with such diseases face when trying to behaving credibly during interactions with their physicians.

Results

In the following section, I document participants’ experiences with delegitimation by physicians and medical staff. Delegitimation is an interactional process where one person undermines or calls into question the legitimacy of another’s claim. I found that the invisibility of symptoms and lack of clinical “proof” of suffering contributed to respondents’ feelings of isolation, sadness, and dehumanization. In the absence of doctors seeing their suffering as legitimate, patients formed accounts in which they justified their knowledge of their own bodies and rejected the stigma associated with these delegitimizing encounters. Some expressed that their knowledge of their bodies superseded medical knowledge when it came to treating CD.

This chapter highlights the recurring theme of a struggle for power between patients and providers over the credibility of symptoms and knowledge of the body. Specifically, I explore how people living with a chronic illness experience delegitimation. Moreover, I’m interested in uncovering what actions/feelings participants experience following these encounters.

Results

Finding 1: Delegitimizing experiences lead to patients feeling demoralized, infantilized, and dehumanized.

Thirty of the 35 participants reported negative interactions with providers in which physicians called into question, dismissed, or ignored their pain and other symptoms. They struggled to be “seen” and have their bodily experiences taken seriously. Participants contrasted their daily struggles with their symptoms (e.g., abdominal pain, loss of appetite, vomiting) against clinical tests showing no signs of active disease. All described a disconnect in the experience of presenting no signs of active disease while still suffering from intrusive symptoms.

Andrea, age 25, was a married high school music teacher who worked full time and for the previous three years had lived with a host of medical problems, including Type 1 diabetes and

CD. She described the disconnect between physician knowledge by way of a colonoscopy and patient knowledge from her loss of appetite. In her words:

Right now I’m going through some pretty bad symptoms. But I have, my symptoms are still just pretty much as bad as they were in an active flare, but because my [colonoscopy] doesn’t show anything, my doctor doesn’t think it is exciting and I’m just kind of weak, which I’m not and I know I’m not … So, I haven’t eaten in four days, but if you think I am fine, whatever.

Andrea also struggled with painful CD symptoms on a daily basis, despite being told by doctors that her disease was not in an active flare-up. Because of her persistent pain, her doctors performed a colonoscopy to identify signs of aggravated CD. However, without empirical evidence to confirm an active flare-up (e.g., inflammation, scarring, ulcers), Andrea’s doctor did not offer a different treatment plan to address her condition. Andrea shared her feelings of being demoralized by her doctors who saw her as weak for not being able to tolerate pain and for her supposed overreliance on the healthcare system. Without the support of her medical team,

Andrea was forced to treat her symptoms by avoiding food and drink, limiting her activity, and

staying at home. She used her avoidance of food and drink as credible evidence that she was not

“fine,” and therefore not “weak” for seeking medical attention for her worsening condition.

Participants regularly found themselves at odds with what their illness reality was versus what physicians could “see” on colonoscopies and in bloodwork. Natalie, age 28, was also told that she was in remission, but had reservations about that diagnosis, based on her daily symptoms. She began experiencing CD symptoms in her late teens, and was diagnosed at age 20.

As a result of difficulties from her condition, she had to drop out of college and at the time of the interview, worked full time as a store clerk. She questioned her doctors regarding why she was still experiencing debilitating fatigue when her bloodwork repeatedly came back “normal.” She explained:

I think that [the doctors] might classify it that way just because I don’t have active disease going on, I guess. But at the same time, I don’t feel like [I’m in remission]. I’m so tired. I’m so tired and I can’t see how everything could be so okay if I’m so tired. In my labs, they’re okay. That’s another annoying part, the whole “Oh! Your lab work was fine.” Well that’s all well and good. Can you tell me why I’m still having stuff going on? Natalie felt frustrated by her doctors’ inability to answer her questions about why she was still experiencing symptoms, despite being diagnosed with clinical remission. Having to endure repeated medical testing took its toll, leaving her feeling defeated and with limited treatment options to treat her fatigue. Like Andrea and other participants, Natalie used her knowledge of her own body and suffering as evidence that she was not doing as well as her bloodwork might show. In her words:

I have times where I am 30 minutes in the bathroom. I have pain with it. I don’t necessarily have the blood [in my stool] right now, but I have pain. I have days where I’ll forget to eat, like I actually forgot to eat for a day and half a couple of days ago. Things like that, just because I don’t necessarily get hungry. Natalie was put in a difficult position, caught between physicians’ medical knowledge of the

disease and her own experiences; her body was telling her something but she was told by others that she was not correct in her feelings. Ultimately, Natalie ended her narrative by saying that her disease often showed up more often in her intestinal tract, where traditional colonoscopies cannot reach to record signs of damage. She did not discount the utility of colonoscopies altogether, but rather relied on her symptoms as the deciding measure of illness in her life. This left her feeling defeated when physicians did not take her complaints seriously, “which is really, really annoying.”

Participants (n = 25) also spoke at length about interactions with medical providers trivializing their pain and attributing the suffering to poor dietary choices. Physicians often place blame on the patient for not trying hard enough to control their disease. Katelyn was on disability as a result of complications from her CD, including fistulas, osteoarthritis, bone loss, dental problems, and the removal of her colon five years previous. At the time of her interview, she had been living with CD for 27 years. At age 46, she explained how others perceived her poor health to be the result of bad choices, stating:

It’s just, I think you’ve probably come across this. People look at it as you’ve eaten something bad and you shouldn’t do that. Or you are not eating correctly, and that’s why your life is hell and it’s just a crummy kind of mentality. I’ve even gone to [the] ER, told them my situation, told them the [gastroenterologist] was waiting for me, told me that, told them that I was diagnosed with Crohn’s and they put “tummy ache” down. In her description, it is clear that the ER physician did not take her diagnosis of CD seriously and downplayed her abdominal pain as a trivial stomach ache. Despite over two decades of experience with the signs and symptoms of CD, Katelyn’s illness reality was dismissed and superseded by a “professional” opinion. Repeated experiences like the one left Katelyn feeling conquered. As a result, she avoided seeking medical attention in order to bypass further delegitimizing experiences.

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This was a common pattern expressed among other participants, as well. Respondents explained that experiences of delegitimation with medical providers left them feeling infantilized and powerless. Cindy, a 39-year-old white woman who was remarried with two young children, sought help for managing the disruptive side effects of Medication H. Instead of treating her hot flashes as a side effect of the medication, her physician dismissed her symptoms and attributed them to hormonal changes. In her own words:

Yeah, I actually went to a Crohn’s specialist my GI sent [me] to … because of my Medication H. I was having some really strong side effects, headaches, nausea, hot flashes, dizziness, and I still have a lot of that stuff. He basically told me that there was no way I could have hot flashes when I’m on Medication H, that I need to go see my gynecologist because I was at that time of my life for menopause, which I mean it does happen, but I never had hot flashes before until I got on Medication H … I won't go see that Crohn’s specialist again because he treat[ed] me like I was an idiot.

Cindy disclosed that this was not the first time she has had interactions with a physician who disregarded her complaints related to CD. She left this interaction feeling foolish for seeking medical attention for hot flashes, despite her other symptoms related to Medication H that, at the time of the interview, still had her concerned. Notably, Cindy left the specialist’s office feeling infantilized and shocked that he would so easily dismiss her concerns as a gynecological problem, rather than a side effect of the CD treatment. Understandably, Cindy was angry at the doctor’s behavior. Ultimately, she decided to not return to that specialist, in order to avoid further pejorative treatment. She stated that she did not want to waste her time with a doctor who would not help her. She later discussed fearing seeking out further consultations with other doctors. In this case, delegitimation served as a barrier to future healthcare.

Other respondents reported similar encounters with hospital staff who ignored their health problems. Katie had been living with CD for 22 years and suffered from a multitude of related chronic health problems, including chronic pain, fatigue, severe anxiety, and debilitating

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arthritis; she has to use a walking cane for purposes of mobility. Due to her complex health

issues, she was forced to work from home part time. Age 41, Katie explained how she felt

ignored in the emergency room despite clear evidence that something was amiss, especially

when she suffered from an unexpected panic attack in front of the hospital staff. In her words:

The last time I was [in the ER] and you know, I don’t know how they treat you in the hospital where you are. Like, I had a panic attack and I couldn’t breathe and they just laughed it off which really pissed me off. Then, luckily, I brought my own [anxiety medication] and stuff. So I just took my own because they were useless.

From this and other experiences of delegitimation, Katie had learned to rely on her own

knowledge of her body and prepared herself by bringing her own anxiety-reducing medication

with her to the hospital, specifically for instances where the medical staff might be dismissive

and unresponsive to her medical needs. She continued, explaining how these experiences of

delegitimation with other providers left her feeling infantilized and powerless.

I have a really hard time with [GI doctors]. I don’t like it when they treat me like a piece of crap and make me feel like an injured child … I don’t want to be treated like I’m two years old and that I am, what's the word, I’m over exaggerating things. I hate it. I don’t like feeling like that.

Katie’s story reveals an important recurrent theme throughout all of the interviews. There is an

unequal power dynamic between a lay patient’s deep bodily knowledge and the professional

medical knowledge that structures modern medicine.

Other respondents also described the apparent power imbalance between patient and

provider. Grace, a 45-year-old divorced woman with arthritis and a history of fistulas,5 explained

her experience with a paternalistic physician:

I had a GI doctor when I had my [bowel] obstruction when I was in Mount Vernon. I was rushed by an ambulance. [The doctor] was such a complete dick. He thought he was God’s gift to everybody and he had the audacity to tell me that I need to “take Metamucil.” And then he was in Africa and these women in Africa have more problems

5 An abnormal passageway formed by an abscess that connects two organs or vessels that do not usually connect (Miriam-Webster, 2016). Participants reported pain and an average recovery time of six weeks. May require surgery. 102

than me and he treated them and blah, blah, blah. I was like, “Are you kidding me right now? Like, really? Honestly?” I said he was such a dick, and I was like, “You have no idea. Don’t come in here and tell me. I can take whatever laxative there is there, sweetheart, and it isn't going to work because I have an [intestinal] blockage, you dumb ass.” Grace had read extensively on CD and its risks and complications, since she had been diagnosed

17 years prior. She believed that she has an intestinal blockage, a condition that might require surgery6 to correct, and rushed to the nearest ER. She felt that the doctor did not take an appropriate interest in treating her pain and abdominal symptoms, and was angry because she was being overlooked and undertreated. The doctor recommended too conservative a treatment: an over-the-counter fiber drink. Grace felt further demeaned when the doctor began telling her of his work volunteering abroad, and that he considered her to be more fortunate than his patients in

Africa.

Katelyn, age 46, wanted an equitable relationship with her doctor and needed additional help managing her illness. She called her doctor after she got sick one afternoon, expecting both medical treatment and empathy. Instead, the physician dismissed her symptoms and refused to see her in his office. This effectively denied Katelyn access to treatment options at that time. She stated:

I called [my doctor] one time, told her I was having the [cramping and diarrhea] problems still and I’m on over 40mg of [a steroid] and, like, I can’t eat anything. She replied, “What do you want me to do about it?” in a very sarcastic and a hateful way. Not a, “What would you like from [me]? What do you think we should do?” You know, nothing like that. It was, “Well, what do you want me to do about it?”

It is clear Katelyn perceived a lack of urgency in her provider, the absence of motivation to provide help. Katelyn did not expect to be denied treatment. There was no discussion of collaboration with her doctor on the next steps going forward. She expressed shock at her physician’s tone of voice. She also reported being unsure of who to turn to for medical attention

6 About 25% of patients with a small bowel obstruction require surgery (Ferri, 2014). 103

and fear that her complaints were not legitimate. Not only did physicians trivialize participants’ complaints and demean them for seeking medical attention, some doctors also conveyed a strong message that there was no urgency to treat their conditions. Katelyn expected her doctor to be responsive to her pain and that they would work together as a team to figure out a solution.

The lack of urgency to provide more treatment options was a recurrent theme reflecting a mismatch between patients’ expectations of care and physicians’ willingness to dispense it.

Namely, respondents wanted to return to the active lifestyle they had before diagnosis. For over

12 years, Addison, age 27, suffered from polycystic ovarian syndrome (PCOS), as well as CD.

She offered an account of a time when she expected her doctor to be more involved in her care.

She suffered from CD complications, including blood loss that required multiple transfusions.

Addison recounted:

In 2013, I spent a total of seven weeks in the hospital due to complications with the colitis at that point. I had blood transfusions every couple of weeks. My doctor wasn’t, there wasn’t an urgency for him [to help] … I had like zero energy, was very lethargic, didn’t want to do anything. I went from, I was very active before my Crohn’s really got bad, and so it was a big part of who I was and I just did not want to, like, continue going on that way.

In the narratives above, the recurring theme of a struggle for power/knowledge between patients and providers over the credibility of symptoms and knowledge of the body is clear.

Participants struggled to prove that their symptoms were real and intrusive enough to necessitate medical intervention. In situations where patient accounts of pain and symptoms do not match up with clinical evidence, physicians may question the legitimacy of patients’ claims and deny further treatment. Participants relied on their past experiences with the illness and knowledge of their bodies, as well as medical texts and published articles, to learn more about the disease when the legitimacy of their suffering was being questioned. Respondents used their research efforts to bolster their claims to medical care and their desire for new treatment options.

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Finding 2: Delegitimation as an attack on moral character

Respondents also described the impact that having their medical concerns delegitimized had on their emotions. One point of concern was physicians judging them as hypochondriacs or addicts. Madeline, age 52, suffered from colitis, fibromyalgia, and chronic back pain; all contributed to her being on disability. She explained that her past experiences left her feeling like

“a second-class citizen.” She went on to say that her experiences with delegitimation made it feel like physicians were communicating the message: “We just don’t have enough time to deal with you.” Understandably, she felt “defeated. Yeah, I feel sad. I feel alone. I feel isolated. I feel dehumanized.” She went on:

You just feel kind of [doctors’] anxiety in the way they respond and the way they speak to you, you know. You can tell, and I understand what they are going through, but I also know what [pain] I’ve been going through before I got there. So I don’t feel this real compassion [from doctors] or this real overwhelmed sense to make [my condition] better.

Madeline expected compassion and a sense of urgency from the medical staff, and an eagerness to treat her pain. While she understood the stress some doctors might be under to treat many patients at once, she also knew her body and the pain she was experiencing, and needed help managing it. She experienced delegitimation in the form of being ignored. She explained:

On December 30th I went to the doctor. So I went in and I was in so much pain. My blood pressure was [high], 183 over 103. Then I started, I was feeling dizzy. I was still, like, nauseous. I was still, like, hurting and crampy … Then I waited in there, and I [was] feeling worse, worse, and worse. Then the nurse never came in. The doctor had left. So, but [the nurse] hadn’t returned, so I was there another hour and a half by myself, feeling really lousy [and] knowing I had to drive home. I just had to get up and leave. Nobody asked me anything. Nobody helped me and nobody even sent my medicine at all. Yeah, so, I just, you are kind of a second-class citizen … So, its things like that … and I still haven’t gotten a call back, nor [did] they call and ask me if I was okay.

Other respondents noted the demeaning aspects of seeking medical treatment with an invisible illness. Grace, a 45-year-old television producer, resisted going to the hospital because

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of poor experiences she had in the past. Notably, she reported that she felt like the staff judged her to be a hypochondriac, which made her feel ashamed for going to the hospital. In her words:

Then if it gets really bad, I’ll go to the clinic. I’ve been really fighting that, because it’s so degrading and [demeaning]. Because it’s like nobody really gets all that you are feeling and all that you are going through. It’s hard to explain. You almost feel like you are just this crazy hypochondriac, you know. I have so many symptoms and so many different issues and it’s easy to tell if someone will look at me like I’m crazy, and you feel bad.

Grace not only had to manage her health concerns, but also her feelings surrounding others’ judgment of the credibility of her symptoms. Her comments illustrate the emotional challenges associated with seeking medical attention.

Gary, age 44, had to travel long distances to get medical care from a GI specialist.

Despite experiencing intrusive and frequent bowel movements up to “10 times per day,” his doctor would not make an appointment to see him because his issues were not life-threatening.

When he finally got an appointment, the doctor trivialized and dismisses Gary’s concerns, attributing his pain to psychosomatic problems. Gary described his experience of trying to get a doctor’s note to verify that he was sick and validate why he had been missing work.

I lived in Northwest City, and my doctor was in Central City. So it was like a three-hour, one-way trip just to go see my doctor, and that was once a year. That was the only, I could get one appointment once a year and that was it … Because he had that many patients, and … if I didn’t have any life-threatening issues, you know, I was able to go work. I was able to maintain my work, [so] you don’t need a doctor appointment. Even though I’m going to the bathroom those many times, it didn’t occur to them that that was an issue or something … Not only did they not listen, they basically told me things like, “Oh! It’s in your head. You don’t know what you’re talking about. This can't possibly be right.” I even had one doctor, I got sick a couple of days and I missed a couple of days at work and I had a doctor’s appointment with this guy on a Friday. I had told my work, I said “Yeah, I’ll have a doctor’s appointment on Friday. I’ll get you a doctor note.” Blah, blah, blah, because I was sick. [The doctor said] “No, you don’t need that. You look perfectly fine. You made it to your doctor’s appointment. Why can't you go to work? You have no idea what you’re talking about.”

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Gary’s disappointment and frustration with his doctor’s dismissal of his complaints, as well as the lack of access to appointments, is evident in the above extract. He felt ignored and disrespected that his doctor would not listening to his complaints of using the bathroom more than 10 times per day. The doctor trivialized his symptoms and did not understand the burden his symptoms created, because Gary looked well and was able to work. Without a doctor’s note,

Gary lacked proof of his suffering and needed validation that he had a serious problem that required medical attention and time off from work. Many participants like Gary perceived these interactions as an attack on their integrity, as though they were accused of trying to escape their duties at work or school.

Some participants (n = 10) also shared that certain physicians viewed them as “drug addicts” for repeatedly seeking solutions to their pain and other hard-to-manage symptoms.

Cindy, age 39, articulated that “the medical field has basically made Crohn’s patients feel like … you're making too much out of it. There's nothing wrong with you, that you're really not in that much pain. All you want is meds, and it's frustrating.” Molly, a 28-year-old full-time nanny and student, stated: “I feel like if I go to ask my doctors for these medication[s], that they will be like

‘Why do you even want them?’ I feel like they will look at me like a drug addict.” Being labeled as an “addict” is a form of delegitimation that, again, calls into question their moral character and also places an individual burden on patients to control their pain on their own.

Derek, a 34-year-old pharmacy technician, also suffered from Hepatitis B and anxiety related to CD. He shared his frustration from dealing with good and bad nurses passing judgement on his need for pain medication. In his words:

I always feel, depending on what nurses I know, what nurses are good and what nurses are not. I always feel like they’re judging me and I absolutely hate it. Just like, because I’m too young and I need some help and I feel like sometimes they think that [is] a lot of it and that we’re just druggies, like were addicted to painkillers. We just want it because,

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you know, you know what I mean, like we’re drug addicts. But that’s not the case. It’s really annoying and I really don’t like it, so it frustrates me … So, but you do lose your dignity when you’re in the hospital. That’s for sure, especially when you’re really sick. Derek was clearly angry that the hospital staff’s treatment of his pain was based on their judgement of him being a suspected drug addict. He knew that going to the hospital would include others passing judgement, not only on his condition and the legitimacy of his suffering, but also on his personhood. Being subjected to this level of scrutiny is one way that participants felt they lost their dignity when they were receiving inpatient care at the hospital.

The narratives reveal the emotional impact of delegitimation experiences in the clinic.

The power/knowledge struggle between patients and providers over the moral labels assigned to patients without clear, observable signs is evident. For example, participants reported feeling dehumanized, demeaned, and like second-class citizens following such delegitimation experiences. Respondents perceived that their doctors were passing judgement on their personal character as reasons for their illness behavior, such as being drug addicts or hypochondriacs.

Delegitimation also had professional consequences. Some participants like Gary were denied work-excuse notes from their doctor that would have served to legitimize the illness. In the next section, I examine the impact that delegitimation experiences have on participants’ mental health.

Finding 3: Delegitimation experiences led participants to question the legitimacy of their symptoms and, thus, their sanity.

Those who internalized the stigma from negative interactions with their providers began to question their own mental health and claim to their illness experience. After repeatedly seeking medical help but being dismissed or ignored, participants (n = 29) shared the impact delegitimation experiences had on their “mental space” (e.g., Brittany and Frank). Respondents

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reported feeling uncertain and questioned whether they had a “hypochondriac mentality.”

Andrea, age 25, often questioned the reality of her symptoms, fearing that she was creating her own health problems. Her story also revealed an important internal struggle to establish her own legitimacy in the illness experience for herself. She explained:

It’s hard and annoying. At first I thought I was, like, getting [a] hypochondriac mentality. It was making me really nervous that I was starting to become crazy and creating symptoms myself. So I just felt like garbage, couldn’t get out of bed, couldn’t move, and everyone around me was telling me I was fine. So if, like, now I’m petrified of becoming that crazy person who walks themselves to a doctor’s office and screams about needing treatment. It really makes me nervous because sometimes I really have to evaluate if I really feel as bad as I think I do, or if I’m just going nuts. The data show a clear pattern whereby participants wanted concrete solutions to their pain, rather than being made to feel that they were imagining their conditions. Grace, age 45, said: “It’s hard to explain. You almost feel like you are just this crazy hypochondriac, you know?” She described her encounters with physicians who questioned the credibility of her symptoms as “a very humbling experience.” Other participants stated that their delegitimation experiences stayed with them, and that they internalized them by way of repeatedly questioning their sanity. Cindy, age 39, explained: “Well, it makes you feel crazy sometimes, thinking that it’s all in my head. Am I making it up? … I still sometimes feel like I'm making a bigger deal about [it] than what it is.” Diana, age 51, noted: “I mean, most of [the doctors] act like we don’t know what we are talking about, that we are imagining it … I really don’t want to go back to the dark place. I really don’t.”

Similarly, other participants reported that the invisibility of their CD symptoms made it harder to appear credible. Cindy described how medical staff undermined the legitimacy of her health complaints by making her feel like she was creating the pain in her own mind. In her words:

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[Doctors] need to know what we are going through and how we're feeling and how the medical field makes us feel like hypochondriacs. That's the biggest one. If I could change anything about Crohn’s besides finding its cure, [it would be] to make the medical personnel people more sympathetic towards this. Not sympathy like, “I'm so sorry.” More like, “Okay, where is your pain at? How high is the pain?” Don't tell me I'm over exaggerating. So that's the biggest frustration and I think that's part of the reason why I won't go to the hospital unless something is really, really wrong. I don't want to be made to feel like it's all in my head. Participants shared that they often avoided going to the ER, specifically in order to prevent interactions with medical staff. Charlie, a 35-year-old part-time gas station attendant, thought that one explanation for medical staff not legitimizing patients’ suffering was physicians interpreting their patients as being untrustworthy. He explained:

But another thing is, you can’t see it, and so anybody can fake looking tired and being tired. Saying, “Oh! I hurt and blah, blah, blah.” So it’s a whole trust thing to it. [Doctors] think you are lying. I think it has to do with, yeah.

Interviewer: Have there been times when you’ve like felt like that?

Oh! Yeah, and even like it was all [in] my head. I felt like that before. Participants expected their physicians to believe their accounts of illness. When physicians conclude that patients’ symptoms are imagined or fake, trust is eroded, as Charlie described.

Many respondents (n = 29) found it a struggle to maintain a positive outlook when they were subjected to judgements of “faking” being ill. Natalie, age 28, shares how being labelled as irrational and crazy by her doctors impacted her mental health. In her words:

Going through my flares, for the longest time [I was] being told everything was in my head, [that] I was just irrational. I think most of us were told we’re crazy at least once.

Interviewer: So, how did you react to being told you were crazy by your doctors?

Definitely a lot of planning, questioning my sanity a lot … Some days things like that will make me cry.

When respondents failed to achieve legitimacy for their suffering, they responded in part by questioning the validity of their symptoms, as well as their sanity. Participants engaged in fact-

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checking their symptoms before seeking medical attention, as a strategy for avoiding possible delegitimation encounters and, thus, further discrediting their health condition and personhood.

Importantly, participants pointed to an underlying component of delegitimation: the eroding of trust between patient and provider. In the narratives above, it is apparent that participants struggled to maintain a positive outlook when delegitimation experiences led to self-doubt.

Finding 4: Participants used knowledge of their bodies to justify their suffering as legitimate and refute the notion that they were ‘crazy.’

Participants used their knowledge of their bodies to provide justifications for seeking medical attention and demonstrating that they were not “weak,” “faking it,” “crazy,” “addicts,” or “lazy.” Following experiences where they questioned whether they had a hypochondriac mentality, participants counteracted negative emotions by citing their bodies as proof of their suffering (n = 29). A prominent theme of being “in tune with one’s own body” is clear in the following narratives. In her eight years of experience living with CD, Cindy learned to keep the problems associated with her illness to herself. She shared that she had many experiences with medical staff discrediting her symptoms. Sometimes, she internalized past delegitimation encounters and re-evaluated the severity of her symptoms. Ultimately, she decided to trust her knowledge of her body. In her words:

So, it’s really frustrating when the medical people don’t really understand when you are telling them what’s going on with your body and then they are saying, “Well, that can’t be possible” … I mean, every day you have something new and I’ve gotten to the point now where I just don’t talk about it. So, I just got to point where I just kind of keep it to myself and just keep going. They think you are complaining all the time. I know that’s sad too, and they are like “Well, you don’t even look sick.” That’s the biggest one … Yeah, the one main thing about Crohn’s is that it really put me in tune with my body. So, I know my body inside and out and if I'm telling somebody I feel [a] certain way, I have to do all the questions in my head. Am I really feeling like this, or what? But yeah, my body is not lying to me. That’s pretty much it.

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Other respondents revealed similarly high amounts of trust in their knowledge of their own bodies, an understanding that superseded physicians’ knowledge. Participants described becoming more informed about their health and the workings of the medical system since their diagnosis. Andrea, age 25, was well-informed regarding how to manage her complex chronic conditions because of her own research and experience with living with Type 1 diabetes and CD.

However, having this knowledge did not mean improved interactions with physicians. She explained:

I feel like doctors don’t want to hear you talking about your own health in terms of what they know. So it kind of like rubs them the wrong way. So it’s a hard balance to hit, because I know how I feel and I know when I have a flare, and I know when I call the doctor’s office and ask for a test, they know I have it. Every time I request a test, it always comes back positive. Like, I really do know my body pretty well. So, like, I feel like I’ve become a lot more informed about my health and about medicine in general since I have been diagnosed. I am not going nuts … I kind of figure it out on my own. It’s never that. I’m not one to over-exaggerate how I feel. So if I really don’t feel well, there is a reason behind it. It’s not because I’m making something up.

Andrea had faith that there were concrete reasons behind why she was experiencing troubling symptoms, and she was not someone who imagined or faked health issues. She was confident that she knew her body best and used her medical knowledge to reinforce her requests for clinical tests to confirm her condition. Notably, Andrea reported that her doctors were either uncomfortable with or unwilling to listen to patients explain their health condition(s) using medical language. This makes self-advocacy difficult for patients who want to assert themselves in their clinical encounters. As such, the control of medical knowledge and medical discourse remains limited to physicians, who sustain the roles of authoritative physician and submissive patient.

Other participants shared accounts of unique or specific pains that they knew intimately.

They used their knowledge of their bodies as definitive proof that something was wrong.

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Brittany, a 27-year-old part-time therapist in a chiropractor’s office, trusted her body to give her information about her illness. In her words:

[The diagnosis] was official but [the doctors] still couldn’t find [signs of] it. It was like a long time of them saying, like, “I don’t think this is anything,” and I was like, “Mmh, this is definitely, this is definitely a flare. Like, I know my body and this is something. This is something, and it is not going away with all your medicine. It is not going away” … But just knowing my body. Your body knows it is wise. It will give us information, and it stores this stuff … So, like, it would give us information, and we haven’t been looking at it, or tuning in to it. But it is such, like, a unique karma too, because it is not, I don’t know, it’s like you against yourself … You can’t cut yourself out of your body. Like, you have to live in it all the time. Brittany discussed the role her body played as a wise information holder. She approached her body with the attitude that it had something valuable to say. When medical knowledge failed to identify the source of her suffering, Britany turned to her body to inform her of her health needs, since it was always with her. Interestingly, she noted, “you can’t cut yourself out of your body,” thus asserting that the body and self are one unit that cannot be separated by, for example, the medical gaze.

The concept of the “wise body” resounded among other participants, as well. They also trusted their knowledge of their own bodies to the point that it supplanted their trust in their physicians’ knowledge. Diana, age 51, stated:

I know my body better than any doctor. I need to not be asking what’s wrong. I need to be telling [doctors] this is what’s happening … Yeah, because the knowledge, knowledge is strength. So even though I’m lying in bed right now and I’m in a lot of pain, I know what this is ... this pain. This flare here, so much pain. I’m feeling the pain. Like I’m, my mind goes right to where it is, and then I feel it. I look at it. I sense it. I feel it. Diana found solace in knowing what was happening to her body. In the past, she did not know how to handle the uncertainty of her health problems because she did not know what she was fighting against. She shared that even though she was in pain, she had come to understand what to expect from her illness because of the knowledge she had gained. She used her knowledge of

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the disease and of her own body to advocate for herself in her interactions with her health care providers.

Grace, age 45, advocated for herself by refusing certain treatment options she felt doctors were “throwing” at her. She explained:

Like, I’m going to feel when something is wrong. Do you know what I mean? Like I’m more into it, how my body is solving all things now … You know your body. What I learned is I have to listen to my body and find out what works for me. The doctor can't tell me what works for me. He can only give me a bunch of pills and pump me full of Medication H or whatever. After over 17 years of experience living with CD and a host of other related chronic conditions,

Grace was confident that she knew what would work best for her body. Like other participants, she realized that there were limitations to the treatments doctors could provide. Now in remission, she handled her illness on her own on a day-to-day basis, making adjustments as needed (e.g., rest and dietary changes).

In the narratives above, the prominent theme of being in tune with one's body is clear.

Following delegitimation, participants used their knowledge of their bodies to validate their suffering. The “wise body” served as a source of truth when medicine failed to provide concrete solutions to their ailments. Included in the concept of the wise body is the notion that the self and body cannot be separated. This is evidence of participants reacting to the scrutiny of the medical gaze and its alienation of the person from the clinical encounter. Respondents revealed the high amount of trust they placed in their own knowledge of their bodies, which ultimately superseded physicians’ knowledge. Trust is an underlying subtheme throughout the narratives, especially when participants were discredited and subjected to moral judgments of character.

Discussion

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Professions such as medicine lay claim to expertise and jurisdiction over specific sets of tasks (Abbott, 1988). Medicine is a social structure that has a cultural dimension, with distinct norms of interaction, systems of meaning, and rituals that govern professional life (Cech, 2013;

Grusky et a., 2005). My findings not only show the dismissal of symptoms and devaluation of people living with CD, they also reflect the socialization of physicians to assume that claims of suffering without objective proof indicate mental illness or personality flaws, such as a weak character. The delegitimation of persons living with chronic illness can have damaging effects, including questioning one’s sanity and whether one is truly sick or simply inventing problems.

The findings reveal that many people counter this self-questioning by using their intimate knowledge of their own bodies to provide proof of suffering or pain, and refute the stigmatization of being “crazy.”

The professional culture of medical schools includes norms of interpersonal interaction among peers, superiors and subordinates, and doctors and patients, as well as criteria for evaluating whether actions, desires, and goals are worthy/unworthy and laudable/deplorable

(Olufowote, 2015). These are attributes of evidence-based medicine (Djulbegovic & Guyatt,

2017), which includes recognizing the limitations of evidence alone, and has increasingly stressed the need to combine critical appraisal of the evidence with patients’ values and preferences through shared decision-making. The results show that physicians favor physical signs and symptoms when diagnosing chronic illness. There is tension between the proof suffering patients provide and the objective information physicians are willing to accept. As patients gain more knowledge and experience with chronic illness, they begin to gain power in their interactions with physicians, feeling empowered to challenge doctors’ opinions and treatment approaches.

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The need for objective signs to prove a reality transcends medicine. Humans look for rational proof, physical signs of something that exists. Invisible chronic illnesses challenge this belief, because they create people who suffer but produce no clinical proof that something is biomedically wrong. Persons living with an invisible chronic illness must instead offer up personal experience as proof of suffering. My findings add to the literature by showing that patients also use their lay knowledge of their bodies as proof of suffering to challenge the dominance of a formal medical education. They also demonstrate an eroding trust between patient and provider, and the need to improve patients’ relationships with medical institutions and physicians.

Eroding Trust between Patient and Provider

At the structural level, institutional policies send messages about cultural values, some of which are harmful. When patients fail to achieve legitimacy for their suffering, they respond, in part, by questioning the validity of their symptoms and, in turn, questioning their sanity (Finding,

3). Importantly, participants highlighted an eroding trust between patients and physicians, citing the perception that doctors “think you’re lying.” This mentality places an additional burden on patients to prove legitimate signs of disease, including “checking the facts,” the validity of their symptoms, before visiting the doctor’s office. I conclude that this eroding trust is primarily based on patients not receiving legitimacy and the medical care they expect. On a larger scale, the public views healthcare as driven by profit and physicians are no longer held in the high esteem they were in decades past (Starr, 1982). These historical changes contribute to patients’ eroding trust in the medical system at large.

The availability of the Internet is worth noting here, as it allows users to become experts

(Fox et al., 2005) and forces prevailing institutions to be held accountable. Today, much of the

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control of medical knowledge and discourse is limited to physicians, sustaining the roles of authoritative physician and submissive patient. Patients like those mentioned above are caught in an impossible situation when they attempt to advocate for themselves to their doctors. On the one hand, if they speak forcefully on their own behalf, they may be dismissed as pushy, rude, or n non-compliant. On the other hand, if they stay quiet, they may end up not getting a choice in their medical treatment. Furthermore, they need knowledge to make informed decisions about their health, but much of the useful and practical knowledge is only available to medical professionals. They are dependent on physicians to keep them informed regarding their illness, based on scientific research. One of the dangers of receiving medical advice from the Internet is that it is it not always consistent, truthful, useful, or benign.

Seekers of health information must explore their care options by gathering information from health websites, blogs, Web-based forums, social networking websites, and advertisements, despite the fact that information quality on the Internet varies greatly (Seckin et al.,

2016). Americans often turn to the Internet before seeing a health professional (Atienza et al.,

2015). In fact, people now use the Internet more often than they consult with their doctors

(Lupiáñez-Villanueva, 2010). Underlying the growing use of the Internet is a willingness to become involved in health care decision-making and a desire for the ability to make informed choices and decisions (McAllister, 2019) As Dutta-Bergman (2006:469) stated, “the critical role of the Internet as a health information resource has shifted traditional patterns of consumer health information use, the physician-patient relationship, and health services delivery.” Importantly,

Internet use may lead to a sense of patient empowerment.

There exists the normative expectation that patients have historically had limited power/knowledge and the ability to evaluate the capability of physicians, assess their

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recommendations, and select future alternative medical procedures (see Fisher, 1995). The availability of healthcare information and medical knowledge accessible by the Internet is significant because it shifts the power/knowledge away from being solely in the physician’s domain and moves it into patients’ hands. This contributes to the micro-political power struggle between patients and providers over who has the power to legitimize symptoms and knowledge of the body. As such, an important future area of research would be patient empowerment for those living with invisible illnesses. In general, strategies to increase patient empowerment have tended to address two aspects of patients’ illness experience: (1) disease management, and (2) relationships with health care providers (Aujoulat et al., 2007). Approaches to improving empowerment have varied from patient self-management programs (Anderson et al., 1995;

Henrike et al., 2007; Foster et al., 2007; Funnell et al., 2005), to promoting patient involvement in treatment decision-making (Davison & Degner, 1997; Guro, 2007), to facilitating the physician-patient interaction (Little et al., 2004).

Significance and Future Research

My findings demonstrate patients’ increased lay medical knowledge, improved bodily knowledge, and a greater sense of patient empowerment in the physician-patient interaction. The findings also reflect a desire for and shift towards patient-centered care. Persons living with an invisible chronic illness like CD need to be believed when they express their suffering, and taken seriously when seeking medical treatment. With the stark increase in the prevalence of chronic illness across the US, there is a greater desire among medical institutions to implement a patient- centered medical home (PCMH), where healthcare is oriented towards the wellbeing of the whole person. A PCMH recognizes that patients and families are integral parts of the care team.

It is an important partnership among practitioners, patients, and their families which ensures that

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decisions reflect patients' wants, needs, and preferences, and that patients have the education and support they need to make decisions and participate in their own care. By viewing approaches to illness and healing as a partnership, tensions may decrease between physicians and patients over the credibility of symptoms and suffering.

Future research should view discussions of patients’ search for legitimacy through the lens of managed care within PCMHs. Investigating how the support and encouragement of a cohesive medical team might impact individuals’ illness careers will provide insight into how to mitigate the disruptions in one’s biography that are caused by the disease. Additionally, research should be conducted on physicians’ experiences with the diagnostic challenges invisible illnesses pose, answering questions such as: how do physicians’ approaches to treatment vary among known, contested, and invisible chronic illnesses? How do physicians incorporate patient narratives into their diagnostic criteria when handling the treatment of contested or invisible illnesses? How do others living with invisible chronic illnesses provide proof of suffering when there are no physical signs to validate such claims? How can physicians better improve their approaches to the diagnosis and treatment of CD, given that patients have a very hard time securing the legitimacy of their suffering.

Limitations

This study has a few benefits and drawbacks worth noting. First, this is a relatively large sample size (n = 35) for a qualitative study. The group was large enough to support research claims by reaching theoretical saturation, but not so large as to prohibit the deep, case-oriented analysis that is the advantage of qualitative inquiry. The sample was diverse in terms of employment status, education level, disease severity and length, and disability status. This

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variation helped the author paint a picture of a working-age population of Americans living with

CD.

While there are many strengths, there are also a few limitations worth discussing. First, these narratives were retrospective accounts of experiences of living with a chronic illness.

Notably, the sample lacks racial and ethnic diversity. IBD is more prevalent in Caucasians, especially those from northeastern Europe. There is also a higher risk of people of Jewish decent having IBD (Loftus, 2007). However, the rate of diagnosis in African American patients is on the rise, approaching what is being seen in whites (see Betteridge et al., 2013). Research has shown some biological differences in terms of pathology (see Basu et al., 2005), which may lead to different treatment approaches. Regardless of disease specification, both African Americans and

Caucasians felt equally informed about CD, but the latter felt that their disease was under “good” control a greater percentage of the time, 58%, versus 71%, respectively (p = 0.04) (Jackson et al.,

2008).

Another consideration of the sample is bias in terms of self-selection. The sample was predominantly female, which is not surprising considering women are more likely to engage in helping behaviors (Salminen, 1992). One study found that people were significantly more likely to use online support groups if they had a chronic illness such as stroke (OR = 3.03), cancer (OR

= 2.86), diabetes (OR = 2.96), or arthritis (OR = 2.52) (Breen & Rowland, 2010). Participants in these groups likely had higher incomes, used other complimentary strategies, and had worse health statuses. There were no significant findings regarding gender. Both men and women used online support groups, albeit for different reasons. For example, men were more than twice as likely to give information and women more than twice as likely to give encouragement and support (Klemm et al., 1999). The purposes behind participating varied, as well. Information

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giving/seeking was ranked first in the prostate group, and personal experience took priority in the breast group (1999). Because the sample in the present research contained a majority of women, the few men’s stories included did not offer information sufficient to adequately draw any gender-based conclusions. A further limitation of the sample is that it was a convenience sample, and therefore not generalizable to a wider population of chronic illness. It can, however, give an in-depth look at the challenges and barriers people living with an invisible chronic illness regularly face.

Finally, the narratives included in this study draw only upon the patients’ lived experiences. However, having the narratives of physicians who provide care to those living with

CD or other chronic illness would be useful. Patient narratives provide rich information regarding the thoughts, emotions, and behaviors of the individual as they experienced both their illness career and life course. It was the purpose of this dissertation to study the interplay between the two. As such, I discussed the feelings and thoughts they shared as they sought medical care. I could not, however, provide an account of the physicians, who undoubtedly had their own sets of beliefs regarding the treatment of chronic illness and, more specifically, CD.

Conclusion

In sum, efforts to improve communication and mutual trust between people living with invisible chronic illness and their physicians is essential. My results describe the struggles and conflicts some living with CD go through in their everyday activities, such as visiting the doctor when they are ill. There exists an ongoing struggle for power between patients and providers regarding the credibility of symptoms and knowledge of the body. I add to the literature on the chronic illness experience by illustrating the negative encounters that people living with CD experience with their doctors, simply to prove that they are suffering. Uncertainties regarding the

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legitimacy of suffering associated with certain chronic illnesses make it difficult for sufferers to receive clear treatment plans. Thus, patients are increasingly calling into question the ability of common medical practitioners to understand patients with these problems.

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REFERENCES Abbott, A. (2014). The System of Professions: An Essay on the Division of Expert Labor. University of Chicago Press. Abyholm, A. S., & Hjortdahl, P. (1999). Being believed is what counts. A qualitative study of experiences with the health service among patients with chronic back pain. Tidsskrift for Den Norske Laegeforening: Tidsskrift for Praktisk Medicin, Ny Raekke, 119(11), 1630–1632. Anderson, R. M., Funnell, M. M., Butler, P. M., Arnold, M. S., Fitzgerald, J. T., & Feste, C. C. (1995). Patient empowerment: results of a randomized controlled trial. Diabetes Care, 18(7), 943–949. Atienza, A. A., Hesse, B. W., Gustafson, D. H., & Croyle, R. T. (2010). e-Health research and patient-centered care: Examining theory, methods, and application. American Journal of Preventive Medicine, 38(1), 85–88. Atienza, A. A., Zarcadoolas, C., Vaughon, W., Hughes, P., Patel, V., Chou, W.-Y. S., & Pritts, J. (2015). Consumer attitudes and perceptions on mHealth privacy and security: findings from a mixed-methods study. Journal of Health Communication, 20(6), 673–679. Aujoulat, I., d’Hoore, W., & Deccache, A. (2007). Patient empowerment in theory and practice: polysemy or cacophony? Patient Education and Counseling, 66(1), 13–20. Aujoulat, I., Luminet, O., & Deccache, A. (2007). The perspective of patients on their experience of powerlessness. Qualitative Health Research, 17(6), 772–785. Banks, J., & Prior, L. (2001). Doing things with illness. The micro politics of the CFS clinic. Social Science & Medicine, 52(1), 11–23. Barker, K. (2005). The Fibromyalgia Story: Medical Authority and Women’s Worlds of Pain (1 edition). Philadelphia: Temple University Press. Basu, D., Lopez, I., Kulkarni, A., & Sellin, J. H. (2005). Impact of race and ethnicity on inflammatory bowel disease. The American Journal of Gastroenterology, 100(10), 2254. Betteridge, J. D., Armbruster, S. P., Maydonovitch, C., & Veerappan, G. R. (2013). Inflammatory bowel disease prevalence by age, gender, race, and geographic location in the US military health care population. Inflammatory Bowel Diseases, 19(7), 1421–1427. Borkan, J., Reis, S., Hermoni, D., & Biderman, A. (1995). Talking about the pain: A patient- centered study of low back pain in primary care. Social Science & Medicine, 40(7), 977–988. https://doi.org/10.1016/0277-9536(94)00156-N Casati, J., Toner, B. B., De Rooy, E. C., Drossman, D. A., & Maunder, R. G. (2000). Concerns of patients with inflammatory bowel disease. Digestive Diseases and Sciences, 45(1), 26–31. Castleberry, A. (2014). NVivo 10 [software program]. Version 10. QSR International; 2012. American Journal of Pharmaceutical Education, 78(1).

123

Clarke, J. N., & James, S. (2003). The radicalized self: the impact on the self of the contested nature of the diagnosis of chronic fatigue syndrome. Social Science & Medicine, 57(8), 1387– 1395. Davison, B. J., & Degner, L. F. (1997). Empowerment of men newly diagnosed with prostate cancer. Cancer Nursing, 20(3), 187–196. Dickson, A., Knussen, C., & Flowers, P. (2007). Stigma and the delegitimation experience: An interpretative phenomenological analysis of people living with chronic fatigue syndrome. Psychology and Health, 22(7), 851–867. Dictionary, M.-W. (2016). New York: Merriam-Webster. Merriam-Webster. Com. Web, 14. Djulbegovic, B., & Guyatt, G. H. (2017). Progress in evidence-based medicine: a quarter century on. The Lancet, 390(10092), 415–423. Dumit, J. (2006a). Illnesses you have to fight to get: Facts as forces in uncertain, emergent illnesses. Social Science & Medicine, 62(3), 577–590. Dumit, J. (2006b). Illnesses you have to fight to get: Facts as forces in uncertain, emergent illnesses. Social Science & Medicine, 62(3), 577–590. Dutta-Bergman, M. J. (2006). Media use theory and internet use for health care. The Internet and Health Care: Theory, Research, and Practice, 83–103. Eccleston, C., Crombez, G., Aldrich, S., & Stannard, C. (1997). Attention and somatic awareness in chronic pain. Pain, 72(1–2), 209–215. Elzen, H., Slaets, J. P., Snijders, T. A., & Steverink, N. (2007). Evaluation of the chronic disease self-management program (CDSMP) among chronically ill older people in the Netherlands. Social Science & Medicine, 64(9), 1832–1841. Fisher, W. R. (1995). Narration, knowledge, and the possibility of wisdom. Rethinking Knowledge: Reflections across the Disciplines, 169–192. Foster, G., Taylor, S. J., Eldridge, S., Ramsay, J., & Griffiths, C. J. (2007). Self-management education programmes by lay leaders for people with chronic conditions. Cochrane Database of Systematic Reviews, (4). Foucault, Michael. (1973). The Birth of the Clinic. New York: Vintage. Foucault, Michel. (1980). Power/knowledge: Selected interviews and other writings, 1972-1977. Pantheon. Fox, N. J., Ward, K. J., & O’Rourke, A. J. (2005). The ‘expert patient’: empowerment or medical dominance? The case of weight loss, pharmaceutical drugs and the Internet. Social Science & Medicine, 60(6), 1299–1309. Frankenberg, R. (1980). Medical anthropology and development: a theoretical perspective. Social Science & Medicine. Part B: Medical Anthropology, 14(4), 197–207.

124

Fretland. (n.d.). Ryggpasienters mening om den behandling. Retrieved from https://scholar.google.com/scholar_lookup?title=Ryggpasienters%20mening%20om%20den%20 behandling%20de%20har%20f%C3%A5tt.%20%5BPatients%20with%20low%20back%20pain %E2%80%94their%20opinion%20of%20the%20treatment%20received.%5D&publication_year =1990&author=S.%20Fretland&author=J.%20Holmen Funnell, M. M., Nwankwo, R., Gillard, M. L., Anderson, R. M., & Tang, T. S. (2005). Implementing an empowerment-based diabetes self-management education program. The Diabetes Educator, 31(1), 53–61. Gray, J. M. (1999). Postmodern medicine. The Lancet, 354(9189), 1550–1553. https://doi.org/10.1016/S0140-6736(98)08482-7 Grusky, O., Roberts, K. J., Swanson, A. N., Joniak, E., Leich, J., McEvoy, G., … Wilson, V. (2005). Anonymous versus confidential HIV testing: client and provider decision making under uncertainty. AIDS Patient Care & STDs, 19(3), 157–166. Jackson, J. F., Dhere, T., Repaka, A., Shaukat, A., & Sitaraman, S. (2008). Crohn’s disease in an African-American population. The American Journal of the Medical Sciences, 336(5), 389–392. https://doi.org/10.1097/MAJ.0b013e31816a5c06 Kleinman, A. (1992). Local worlds of suffering: An interpersonal focus for ethnographies of illness experience. Qualitative Health Research, 2(2), 127–134. Kleinman, A., Wang, W.-Z., Li, S.-C., Cheng, X.-M., Dai, X.-Y., Li, K.-T., & Kleinman, J. (1995). The social course of epilepsy: chronic illness as social experience in interior China. Social Science & Medicine, 40(10), 1319–1330. Klemm, P., Hurst, M., Dearholt, S. L., & Trone, S. R. (1999). Gender differences on Internet cancer support groups. Computers in Nursing, 17(2), 65–72. Loftus, E. V. (n.d.). The Impact of Race or Ethnicity in Crohn’s Disease. 22. Lupiáñez-Villanueva, F., Hardey, M., Torrent, J., & Ficapal, P. (2010). The integration of Information and Communication Technology into medical practice. International Journal of Medical Informatics, 79(7), 478–491. McAllister, M. (2016). Shared decision making, health literacy, and patient empowerment. Shared Decision Making in Health Care: Achieving Evidence-Based Patient Choice, 234–238. Merriam-Webster. (2016). Merriam-Webster Dictionary (Vol. 14). Olufowote, J. O. (2015). Preparing future physicians in medical ethics: A tension-centered study of institutional and situational dualities. Communication Quarterly, 63(3), 254–271. Raheim, & Haland, W. (2006). Lived experience of chronic pain and fibromyalgia: Women’s stories from daily life. Qualitative Health Research, 16(6), 741–761.

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Rhodes, L. A., McPhillips-Tangum, C. A., Markham, C., & Klenk, R. (1999). The power of the visible: the meaning of diagnostic tests in chronic back pain. Social Science & Medicine, 48(9), 1189–1203. https://doi.org/10.1016/S0277-9536(98)00418-3 Salminen, S., & Glad, T. (1992). The role of gender in helping behavior. The Journal of Social Psychology, 132(1), 131–133. Seçkin, G., Yeatts, D., Hughes, S., Hudson, C., & Bell, V. (2016). Being an informed consumer of health information and assessment of electronic health literacy in a national sample of internet users: validity and reliability of the e-HLS instrument. Journal of Medical Internet Research, 18(7), e161. Serrano, K. J., Yu, M., Riley, W. T., Patel, V., Hughes, P., Marchesini, K., & Atienza, A. A. (2016). Willingness to exchange health information via mobile devices: findings from a population-based survey. The Annals of Family Medicine, 14(1), 34–40. Shriver, T. E., & Waskul, D. D. (2006). Managing the uncertainties of Gulf War illness: The challenges of living with contested illness. Symbolic Interaction, 29(4), 465–486. Sim, J., & Madden, S. (2008). Illness experience in fibromyalgia syndrome: a metasynthesis of qualitative studies. Social Science & Medicine, 67(1), 57–67. Starr, P. (1982). The Social Transformation of American Medicine: The Rise Of A Sovereign Profession And The Making Of A Vast Industry. Basic Books. Walker, J., Holloway, I., & Sofaer, B. (1999). In the system: the lived experience of chronic back pain from the perspectives of those seeking help from pain clinics. Pain, 80(3), 621–628. https://doi.org/10.1016/S0304-3959(98)00254-1 Ware, N. C. (1992). Suffering and the social construction of illness: The delegitimation of illness experience in chronic fatigue syndrome. Medical Anthropology Quarterly, 6(4), 347–361. Werner, A., & Malterud, K. (2003). It is hard work behaving as a credible patient: encounters between women with chronic pain and their doctors. Social Science & Medicine, 57(8), 1409– 1419. Zola, I. K. (1966). Culture and symptoms–an analysis of patient’s presenting complaints. American Sociological Review, 615–630.

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CHAPTER 6. “But then, like, do you go into that subject as well?”: Stigma and the Disclosure of Invisible Disabilities at Work In this chapter, I discuss the disclosure of invisible chronic illnesses at work, including the stigma associated with Crohn’s Disease (CD) in the workplace and the potential it poses for discrimination and harassment. For those living with a chronic illness such as CD, disclosure may be a self-management strategy for dealing with workplace stigmatization. My findings contradict current conceptualizations of stigma as a driving force behind choosing to disclose. Although previous research has found that people living with a chronic illness do not disclose their health status at work, I found evidence that chronically ill persons do disclose and, furthermore, their motivations to do so extend beyond a need for workplace accommodations and medical leave. Discussions in this research were framed using Goffman’s theory of stigma (1959). The results show that participants were motivated to disclose by implementing values such as education with the goal of social change, and their valuing honesty and empowerment. I argue that these values are a means of attaching meaning to their illness experiences by connecting their individual understanding to larger social norms about illness and disability at work. Disclosure is one way that people living with a chronic illness can be “seen,” and it may combat the stigma that exists at the intersection of work and illness. Introduction

A large proportion of American workers manage one or more chronic illnesses, yet this population is largely understudied (see McGonagle & Hamblin, 2014). Chronic illness and disability affect workers’ perceptions of their employment experiences, as well as their longer- term tenure in the labor force (Oldfield, MacEachen, Kirsh, & MacNeill, 2016). How occurrences of disabling illnesses transpire and whether a person’s condition manifests itself in public or private defines their day-to-day employment experiences. For employees with invisible chronic illnesses, controlling private health information and disclosure are crucial to job retention (Fowler, 2011). However, disclosure can be problematic, and stigmatization makes

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disclosure in the workplace a risky endeavor. A better understanding of the disclosure of invisible illnesses at work is needed to facilitate continued labor force participation for employees living with this type of disability.

Disclosure is a self-management strategy (Munir, Leka, & Griffiths, 2005) for dealing with an illness in the workplace; it often involves controlling private health information, limiting health-based stigma, openly taking medications and, if diabetic, checking blood sugar levels.

Still, little is known about what motivates persons with an invisible chronic illness to disclose in the workplace, beyond seeking accommodations or medical leave. Research has shown that many employees with chronic diseases often do not disclose (Beatty, 2012; Gignac & Cao, 2009;

Munir, Leka, & Griffiths, 2005), even though disclosing may open access to support services and work accommodations. Specifically, the issues of unemployment and disability among the CD population has largely been understudied and generally is unknown, especially in terms of those who have active symptoms (see Feagan et al., 2005). This chapter examines employees’ disclosure of CD, an episodic, stigmatized, invisible illness that primarily involves damage to the intestinal tract, but also can lead to degrees of bodily pain, fatigue, dysregulated immune responses, and other health issues. Studies have shown that people with moderate to severe CD have higher rates of unemployment (39%) and disability (25%). Young people and women have a greater likelihood of being unemployed (Feagan et al., 2005; Marri & Buchman, 2005). It is prudent, therefore, to investigate the ways in which workers with chronic illnesses are able to effectively manage their condition, while remaining employed and productive.

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Literature Review

Securing steady employment and, thus, healthcare coverage is crucial to managing

chronic illness. Since insurance is obtained through full-time employment in the US, staying

employed is a primary concern for those living with such issues. Increasingly, the burden of

manage chronic disease is becoming highly individualized. As governments reduce social

support programs (e.g., SSI/SSD, unemployment insurance, welfare), the risk is increasingly

being assumed by the individual sufferers (e.g., Murray et al., 2010). Moreover, public health

promotions and awareness advertising portray individuals as responsible for managing their own

health (see the CDC, 2016, “winnable battles”7 program). While this may be an effective

marketing tool for encouraging people to quit smoking, wear a seat belt, or prevent teen

pregnancy, this emphasis on individual responsibility likely increases the health-related

stigmatization of individuals with chronic illnesses that cannot be altered through behavioral

changes alone, as is the case with CD.

With CD, disclosure risks arise not only from the disease’s invisibility, but also from its

unpredictable nature, varying levels of severity, and the general misunderstanding that CD is

caused and cured by diet alone. While CD is a documented and legitimate disease category, its

etiology and pathology are not well understood in the medical community. As such, there is no

clear consensus regarding the best practices for treating CD, other than managing inflammation

and symptoms. Similarly, because CD is poorly understood by physicians, patients often

experience delegitimation of their suffering by their doctors, and do not find the medical support

and care they need. Public perceptions of CD have also emerged that put the sole emphasis on

7 Winnable Battles is a group of public health priorities with a large-scale impact on health. The program targets eliminating smoking cigarettes and preventing teen pregnancy. Categories falling under the Winnable Battles initiative were chosen based on the magnitude of the health problem and ability of the CDC and its public health partners to make significant progress in improving outcomes (CDC, 2016). 129

diet for a “cure.” It is this public opinion of CD that contributes to the individualized burden of responsibility for curing one’s own disease, highly stigmatizing and shaming those who fail to do so. This turn towards individualized self-management is a common normative expectation of individuals with chronic illnesses (Dennis et al., 2008). Because medical legitimacy determines the social legitimacy of an illness (Charmaz, 1991), those with CD are also likely subject to delegitimation at work.

Risks of Disclosure and Stigmatized Chronic Illnesses at Work

A precarious labor market (Facey & Eakin, 2010; Tompa et al., 2006) adds to the risks associated with disclosure. Employees with chronic illnesses must compete with abled-bodied peers to stay employed in shrinking job sectors (Stone et al., 2014). Disclosing anything that harms their image of a competent, healthy worker may put a sufferer at risk of disbelief, delegitimation, stereotyping, loss of status, damage to workplace relationships, discrimination, and job loss. Disclosure of any chronic illness, stigmatized or not, marks an employee as an

“unexpected worker” (Stone, Crooks, & Owen, 2013) who does not fit employers’ expectations of a healthy staff member consistently able to fulfill his or her duties. On the one hand, to gain workplace accommodations, employees with chronic conditions must disclose their need for accommodation, marking themselves as unexpected workers. On the other hand, disclosing a health-based need does not guarantee that one will be given accommodations (Stone, Crooks, &

Owen, 2014), and may instead bring discrimination (Lysaght & Krupa, 2014).

Managers and coworkers may not legitimize invisible or stigmatized illnesses in the workplace, or deem them to be “real.” They may also fail to acknowledge that the impairments caused by invisible illnesses mark a genuine need for disability status. Research has shown that coworkers judge workplace accommodations as undeserved and unfair, and resent ill employees

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when they return to work following their sick leave (Dunstan & MacEachen, 2014). Colleagues may also assume that an employee with a chronic illness is lazy (Kristman, Shaw, & Williams-

Whitt, 2014) or malingering for attention. Studies have shown that coworkers may respond to the disclosure of an illness with disbelief, downplaying the serious nature of the disease (Toth &

Dewa, 2014), and even dismissing the physical reality of the ailment by attributing its symptoms to mental illness (Richardson, 2005). Following this, sick employees may be subject to personal attacks on their character, called complainers, hypochondriacs, and/or attention seekers (Vickers,

1997). Both personal attacks and stereotyping can distress employees (Cameron & Chouinard,

2014), resulting in a loss of status in the eyes of their coworkers. Negative stereotypes can invigorate gossip which, in turn, can damage a workplace reputation (see Vickers, 2012).

Scholars have demonstrated that colleagues often assume that fellow employees with a chronic illness are unreliable (Munir et al., 2005), less competent in their duties (Brohan et al., 2012), offer lower team productivity (Vickers, 2012), and burden their workmates with additional tasks

(Lysaght & Krupa, 2014). This status loss amongst one’s peers can also influence supervisors’ decisions, such that mangers may make choices based on these stereotypes (Crooks et al., 2014), leading to a decrease in job responsibilities and the denial of promotions (Ellison et al., 2003). Ill employees may also be blamed for exacerbating or causing their own illnesses (Vickers, 2012).

These discriminatory behaviors from managers and coworkers are damaging to one’s self-image, status, and credibility as an able worker. Previous research has demonstrated that across a number of contexts, stigmatized individuals face interpersonal discrimination (see Hebl et al., 2007; Singletary & Hebl, 2009). This discrimination is evident not only in terms of job loss8 (Beatty, 2006; Lysaght & Krupa, 2014), but also through harassment (von Schrader et al.,

8 Either through direct discriminatory firing, or indirectly through layoffs and non-renewal of contracts. 131

2014), unreasonable work demands (Vickers, 2012), and by being singled-out for close monitoring (MacDonald-Wilson et al., 2011). This discrimination of employees with chronic illnesses takes the form of interpersonal bullying tactics, and the severe stress that results can serve to exacerbate illnesses (Vickers, 2008, 2012). Furthermore, though the illness itself appears to be the primary reason for job loss, discrimination against employees who are ill can also play a clear role. Previous experiences with discrimination have been found to directly relate to the anticipation of future discrimination, and indirectly relate to job tension when employees use compensatory behaviors (McGonagle & Hamblin, 2014). Anticipated discrimination is important because it is directly associated with an increase in concealing and compensatory behaviors

(McGonagle & Hamblin, 2014), which lead to a decreased health-related quality of life (Daker-

White et al., 2015) and reduced adherence to medication requirements (Burstein, Taft, & Keefer, n.d.). In sum, the potential costs of disclosure to an individual include stigmatization, discrimination, self-scrutiny, social avoidance or rejection, and physical harm (Joachim &

Acorn, 2000; Corrigan & Matthews, 2003; Kaushansky et al., 2016).

Health-related Stigmatization of Visible and Invisible Illnesses

Having a chronic illness and, thus, being different from the general population exposes a person to stigmatization by those who do not have such illnesses (Joachim & Acorn, 2000).

Early research on disclosure and chronic disease attributed persons’ decisions to disclose to the stigma associated with the particular illness (Schneider & Conrad, 1980; Scambler & Hopkins,

1986). Stigma, according to Goffman (1963), is the mark of undesirable, deviant behaviors or attributes that are outside the boundaries of normalcy, as designated by society. Having a chronic illness, one that does not resolve itself with treatment in a short period of time, violates

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the norms of the role of the afflicted (Parsons, 1951), whereby individuals are expected to follow a protocol for getting back to a state of wellness. As a result, individuals with chronic illness deviate from societal norms and are labeled as bad (Conrad & Schneider, 1992), and even criminalized (Hoppe, 2014). This stigmatization of chronic disease leads individuals to conceal their identities in an attempt to fit in with “normal” society.

Perhaps the most important consideration in the relationship between stigma and chronic illness is the extent of the visibility of the condition. Illnesses such as lupus erythema, fibromyalgia, HIV/AIDS, chronic pain, and mental illness are all invisible because their symptoms are not readily seen by others. Other conditions, such as paraplegia and Parkinson’s disease, are visible because their symptoms are on display. Furthermore, some conditions may be both visible and invisible, based on how and when the symptoms occur, such as multiple sclerosis, epilepsy, and CD. According to Goffman (1963), having an invisible illness marks one as discreditable, whereby the stigma is unknown or concealable. In contrast, those living with a visible impairment or illness are known as the discredited; their stigma is clearly visible and marks them as abnormal. This is an important difference when understanding the complex decision to disclose one’s illness at work; often, the choice depends on the degree of invisibility of the disease. A person with stigmatized attributes may work to conceal their identity through

“passing” as normal, in order to avoid discrimination and harassment. For those living with an invisible chronic illness, controlling information through disclosure is one way of managing or preventing stigmatization.

Goffman (1963) described three types of stigmas: physical deformities, character blemishes (e.g., a weak will, dishonesty, addiction, or mental illness), and tribal dishonors. Tribal disgrace occurs when members of a group such as a religion or race are stigmatized and thus

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excluded. Some illnesses, such as HIV/AIDS, carry all three stigmas; the wasting syndrome produces a physical deformity, the perception of addiction serves as a character blemish, and belonging to the LGBTQ+ community creates a tribal disgrace. While invisible chronic illnesses may not always garner stigmatization from others, “the stigmatized individual may be able to hide the discrediting attribute from others but cannot do so from him or herself” (Goffman,

1967). In this way, stigmatization may be felt or enacted. An enacted stigma, or discrimination, is the overt, directly unfavorable treatment of a stigmatized individual. An enacted stigma may also take the form of indirect discrimination through structural policies, rules, or systems that unfairly discriminate against those with a stigmatized characteristic. Consequences may include the loss of employment, denial of opportunities, abuse and violence, compulsory testing or quarantine, and denial of health services (Martino, 2017). A felt stigma is the internalized or emotional impact of stigmatization. It manifests in individuals’ feelings of shame, guilt, and depression, and their social withdrawal from activities. Again, the visibility of a condition plays a vital role in the degree to which onlookers accept or reject chronic illness and disability in society.

Recently, scholars have expanded the conceptualization of stigma beyond social disqualification. Link and Phelan (2001) explained that stigmatization is complex and comprised of co-occurring aspects of labeling, stereotyping, status loss, and discrimination. Jones (1984) identified six dimensions of stigma: concealability, disease course, interpersonal strain, aesthetic qualities, disease cause or communicability, and peril. Concealability refers to the visible or hidden nature of a given illness. The disease course is how the illness changes or progresses over time. For example, progressive diseases such as Parkinson’s or multiple sclerosis begin with mild symptoms and progress to more visible and disabling symptoms that can force one to use a

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wheelchair, a visible sign of impairment. Third, stigma can cause interpersonal strain on relationships. For example, one may find connecting with someone else to be difficult, due to the intrusiveness of symptoms that may force the sufferer to cancel plans due to fatigue, avoid family gatherings, and/or abstain from sexual activity. Fourth, the aesthetic qualities of an ailment include the extent to which an illness impacts one’s appearance. This is closely related to the visibility of the disease, yet it is a distinct element. For example, individuals with cancer who undergo chemotherapy are likely to experience changes in their appearance, such as pale, dry skin, hair loss, and a thin or wasted frame, all of which stigmatize the individual.

Another concern regarding the stigma of an illness is how it might have been acquired.

Disease cause refers to whether the illness is congenital or acquired through environmental, viral, or bacterial causes. Disease cause is important, as healthy individuals want to ensure that they will not contract the stigmatized illness. This leads to separation from those who have a disease that society deems communicable. Finally, peril involves the dangers associated with the stigmatized person. Examples include those who have mental illnesses such as bipolar disorder, personality disorders, and schizophrenia. Jones (1984) argued that “normals” engage in discrimination of the ill when they act on a belief that the stigmatized are not fully human

(Goffman, 1963). As such, they rationalize and construct a system of beliefs that the stigmatized are dangerous or inferior, using words such as “moron” or “cripple” (Joachim & Acorn, 2000;

Jones et al., 1984) to reinforce their beliefs of able-bodied superiority.

Disclosure of Invisible Illnesses

Clearly, there are numerous risks to disclosing a chronic illness at work. Individuals living with an illness are at risk if they discuss anything personal that might harm their image as competent, healthy workers. They place themselves in danger of disbelief, delegitimation,

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stereotyping, status loss, damage to their workplace relationships, discrimination, stigmatization and job loss. Why would an individual living with an invisible chronic illness disclose at work, when they risk losing so much?

Literature on the disclosure of stigmatized illnesses has conceptualized it in a number of ways, including choice and non-choice (respectively, MacDonald-Wilson et al., 2011; and

Church et al., 2005), a yes/no decision (Henderson et al., 2013; Jans, Kaye, & Jones, 2012), spontaneous (Ellison et al., 2003), and protective (Charmaz, 2010). Disclosure has been described as a choice when the chronic illness is invisible; therefore, it is up to the patient to decide whether or not to discuss their condition. Yet disclosure may also not be a choice when the disease presents itself as visible, such as with the chronic, barking cough of cystic fibrosis, or frequent and lengthy trips to the bathroom that accompany CD. Disclosure has also been theorized as a looping process (Toth & Dewa, 2014) and partial (Clair, Beatty, & MacLean,

2005; Beatty & Kriby, 2006), with reoccurring opportunities to disclose when others need reminding of the impairment or the disease’s demands increase. Disclosure may also be selective and planned (MacDonald-Wilson et al., 2011), as in cases where it is possible to only tell immediate managers or fully disclose to coworkers and managers over time, as trust develops

(Irvine, 2011).

When deciding whether or not to disclose, people living with chronic illness are concerned with the locations at which their symptoms might manifest, their possibility of losing their status as moral individuals, a potential loss of self, and possible dislocation or social isolation (Charmaz, 2002). Regardless of the size of their social network, research has shown that people living with chronic disease tend to disclose to only a few peers, and only when they perceive a shared experience of living with an illness or disability and believe the recipient of the

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disclosure to be worthy of trust (Kaushansky et al., 2016). Similarly, employees with chronic illnesses are more likely to disclose to a line manager if they believe they will receive support from him or her (Munir, Leka, & Griffiths, 2005). Workers value the receipt of both instrumental

(e.g., work adjustments and accommodations) and social support. Both were found to be significant factors in prompting full disclosure to line managers, regardless of disease type

(Munir, Leka, & Griffiths, 2005). However, disclosure is also greatly influenced by disease severity, such that employees may be forced to disclose as their illness becomes more visible and impinges upon the sufferer’s ability (see Scambler et al., 2006; Vickers, 1997). Some studies have suggested that the anticipation of stigma or perceived stigma is a driving force behind the disclosure-making process (Benson et al., 2015; Quinn & Chaudoir, 2009).

While disclosure puts the sufferer at risk of stigmatization and discrimination, there are also benefits that can be enjoyed by those who disclose, including an improved sense of self- esteem and increased empowerment and ability to cope. Rohde and colleagues (2018) found that when individuals disclosed having an irritable bowel disease (IBD) such as CD, enacted stigmatization decreased. Knowledge of what IBD is, including its symptoms, pathology, disease cause, and course, all positively correlated to a decreased stigmatization (Rhode et al., 2018).

Public understanding of IBD and CD is extremely poor. When surveyed, adults likened IBD to herpes or HIV/AIDS (Groshek, Basil, Guo, Farraye, & Reich, 2017). Thus, it is not unreasonable to conclude that persons living with IBD might prefer not to disclose and hope that at work they might conceal their illness identity (Barned, Stinzi, Mack, & O’Doherty, 2016).

Yet emerging research has demonstrated a clear relationship between disclosure and improved mental health, increased sociability, decreased distress, higher self-esteem, and better work relationships (Hanghøj & Boisen, 2014; Quinn & Chaudoir, 2009; Joachim & Acorn, 2000;

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Chandra et al., 2003; Kalichman et al., 2003; Patterson & Singer, 2007). Employees may be

willing to fully disclose gradually, if they view their illness as central to their identity

(MacDonald-Wilson, 2011) and seek to educate their workmates about their condition (Irvine,

2011). Workers reluctant to disclose may strategically time their disclosure (MacDonald-Wilson

et al., 2011), waiting until they trust their colleagues (Jans et al., 2012), they’ve passed the initial

90-day probationary period that is a part of most new job hiring processes, or the illness becomes

severe enough that it affects their work (Brohan et al., 2012).

Only a few studies have investigated the factors motivating self-disclosure of invisible

chronic illnesses (e.g., Defenbaugh, 2013; Saunders, 2014). This chapter examines employees’

disclosure of CD, an episodic, stigmatized, invisible illness that primarily involves disease of the

intestinal tract, but can also lead to fatigue, chronic pain, bowel obstructions, diarrhea, and

lowered immune function. People living with an invisible chronic illness must legitimize their

illness identity to gain formal accommodations and ADA9 protection, since because their disease

is invisible, they may appear to be in good health. Thus, disclosure is required and may demand

many performances throughout one’s career. Employees with chronic ailments may need to

remind coworkers of their disability, explain changes in appearance and work productivity, and

receive permission for time off for repeat flare-ups of symptoms. Given the risks of disclosing,

but also considering the possible benefits, one must ask: how do employees with chronic illness

decide whether or not to disclose at work? What motivates them to disclose, if they so choose?

9 “The Americans with Disabilities Act (ADA) became law in 1990. The ADA is a civil rights law that prohibits discrimination against individuals with disabilities in all areas of public life, including jobs, schools, transportation, and all public and private places open to the general public. The purpose of the law is to make sure that people with disabilities have the same rights and opportunities as everyone else” (ADA National Network, 2010). 138

Method

This chapter addresses how people living with CD describe the associated stigma and their decisions around disclosure at work. I drew upon data obtained from 35 semi-structured interviews with persons diagnosed with CD; all subjects were living in the United States and aged between 23 and 54 years. Participants were recruited through snowball sampling (n = 10) and convenience sampling (n = 25) from three different support groups that met through social media. On average, participants were 37 years of age. The average time since diagnosis was 17 years, but ranged from three to 34 years. The majority of the participants were diagnosed in late adolescence, with a few exceptions; this made the average age of diagnosis 21 years. See Table 1 for more demographics-related details of the sample.

Interviews

Telephone interviews lasted between 45 minutes and three hours, with an average length of 90 minutes. They were primarily conducted over the telephone, due to the: 1) geographic locations of participants, who resided in 22 different states; and 2) interviewees’ health restrictions. Written consent was obtained prior to each interview. Participants were asked a series of open-ended interview questions pertaining to three life course domains, including: marriage, parenthood, and career. Concerns related to the stigma of having a “pooping disease” were prevalent, and thus warranted further study. The interview questions were used as a guide, but each participant directed their own narrative, selecting the most salient experiences for discussion.

Data Analysis

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I followed Charmaz’s (2012) suggestions regarding best practice when conducting qualitative research. Data analysis was conducted while also collecting more interviews. Before importing the transcripts into the qualitative analysis software Nvivo 11 (QSR International,

2012), I changed any identifying information about the participants. I began by open coding the interviews in a line-by-line process, making notes and memo-ing along the way. I continued to refine my codes and convert the sub-codes into axial codes that supported the core construct of chronic illness experiences. These axial codes represented overreaching patterns seen throughout the data. These patterns eventually evolved into a perspective on how chronic illness impacts one’s experiences with stigmatization and the decision to disclose.

Results

This chapter’s findings have been organized into two components. First, I establish that individuals living with CD feel and experience stigmatization. Second, I address my research question by demonstrating why individuals with CD decide to disclose at work, in spite of the stigma they might feel.

Finding 1: The Stigma of Having CD Some participants (n = 19) elaborated upon the stigma they perceived and internalized as a result of having CD. Respondents reflected on the individual impact stigmatization has, and also explained the larger social stigma surrounding CD. Themes of internalized stigma emerged from participants’ stories of social suffering and feelings of being unclean, and in turn being unclean as a person. Further, themes of control, both of the body and the disease, appeared to relate to the incorrect perception that CD could be “cured” or managed, mainly through diet.

Failing to control the disease was internalized by participants as a moral failing. Some also internalized the stigma of having an ostomy, as it impacted their images of self and body.

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Notably, participants were clear that CD was much more than a “pooping disease,” and it was this underdeveloped public understanding of CD that drove the stigma.

Charlie, a 35-year-old part-time gas station attendant, explained the individual stigma associated with CD. In his words:

Especially with bathroom stuff and poop stuff and gut stuff, food and stuff like that, digestive, anything like that. Also, with like, getting sick all the time, like immune system and stuff … I think the number one thing is that it’s related to poop, and that’s embarrassing. Nobody talks about it. Charlie highlighted the embarrassing nature of having CD, a disease that is, foundationally, about feces (or “poop”), a topic that is generally considered unacceptable for open public discussion. He also pointed to the chronicity of having an autoimmune disease as contributing to the stigma of CD. Other participants (n = 11) highlighted the chronic and invisible nature of CD as contributing to the stigma.

Interviewees also shared their views on the macro-social aspects of the CD stigma.

Notably, participants relied on their personal knowledge of their illness, as well as other chronic illnesses like breast cancer, to frame their narratives. Some respondents stressed the difference in awareness, fundraising efforts, and public medical knowledge about some illnesses and not others, claiming that these were all factors perpetuating the stigma and misinformation about

CD. Illnesses such as breast cancer carry less of a stigma, as they have become normalized and rationalized. Contracting breast cancer is not seen as the woman’s fault, or the consequence of a personal choice. In contrast, lung cancer is highly stigmatized because it is directly caused by cigarette smoking, which is a personal choice and thus viewed by others as controllable and preventable (see Marlow, Waller, & Wardle, 2015). As such, lung cancer has not received as much positive attention or supportive awareness. Other diseases that are highly stigmatized for

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their perceived controllability and associated personal blame include: mental illnesses (Abdullah

& Brown, 2011; Brohan, Slade, Clement, & Thornicroft, 2010; Parcesepe & Cabassa, 2013), cervical cancer (Shepherd & Gerend, 2013), Hepatitis C (Marinho & Barreira, 2013; Moore,

Hawley, & Bradley, 2008; Noor, Bashir, & Earnshaw, 2016), HIV/AIDS (Mahajan et al., 2008;

Smit et al., 2012; Stangl, Lloyd, Brady, Holland, & Baral, 2013), leprosy (Garbin, Garbin,

Carloni, Rovida, & Martins, 2015; Heijnders, 2004; Sermrittirong & van Brakel, 2014), obesity

(Callahan, 2013; Papadopoulos & Brennan, 2015; Phelan et al., 2015; Puhl & Heuer, 2009) and epilepsy (Bautista, Shapovalov, & Shoraka, 2015; Leaffer, Hesdorffer, & Begley, 2014; Thomas

& Nair, 2011).

The same can be said for CD (see, for review, Taft & Keefer, 2016). CD has received very little media attention, awareness, or research funds, likely due to the public’s perception that

CD is controllable and curable through proper diet. As such, CD is highly stigmatized not only because it is associated with bowel movements, but also because of the societal burden of personal responsibility placed on the individual. Aaliyah, a 27-year-old general manager of a restaurant, compared the stigma of CD to the awareness and acceptability of breast cancer, stating:

Well, I mean, boobs are sexy. Everybody likes talking about boobs. Nobody likes talking about shit. Nobody likes talking about your bowel movement. Nobody likes talking about … well, it's taboo [to] walk into a public place and say, “I just took the best shit of my life.” If you walk in and be like, “Oh My God! That diarrhea was horrible.” Everybody is like, “Oh My God! You can't talk like that.” Like, for some reason talking about poop is not allowed. I don’t comprehend that what so ever. Like, why can't I talk about my poop in public? Why I'm I disgusting here? Aaliyah noted the social acceptability of talking about breasts in public, and contrasted that with talking about bowel movements. Her narrative also highlighted how participants felt morally

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degraded (i.e., “disgusting”) for talking about a routine bodily function. She internalized the social stigma associated with discussing bowels movements in public, and transformed that into feeling disgraced or disgusting for having bowel movements at all.

Other participants noted the problematically unequal awareness given to “sexier” or more

“glamorous” diseases, including the label of “warrior” granted to many patients with chronic illnesses. Perhaps the sexiest disease is breast cancer, where people rally around patients and offer them support through ribbons, advertising campaigns, and three-day walks (see Sulik,

2012). Unlike getting breast cancer, respondents in this study felt a sense of personal blame for having CD, and these feelings were intensified by the fact that they could not control it. This was in stark contrast to breast cancer, where patients are seldom blamed for contracting this type of ailment.

Other interviewees noted the impact that fecal incontinence and its associated stigma had on their sense of personhood. Frank, age 50, worked full time as a factory employee. He spoke of the stigma as follows:

But the masculinity. Yeah, it kind of makes you feel less of a … uh, it’s not less of a man, but less of a person. Because you can’t control your own body, and I’ve had some very embarrassing situations and that was … it is what it is. [Coworkers and friends] think it’s funny that I poop myself. For Frank and other participants, fecal incontinence was more than an embarrassing accident, it was an ever-present threat to one’s dignity. For these respondents, control of one’s body was a major concern. Incontinence is an embarrassing event and can be made even more stigmatizing by others’ reactions. From Frank’s comments, it is clear that the degrading experience of fecal incontinence in public was made worse when coworkers and friends laughed at him, or made

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jokes at his expense. Other participants described the lack of control over their bodies as a personal failure.

Interviewees also noted the stigma of personal responsibility associated with CD, and chronic illness more broadly. There is a public perception in society that CD can be “controlled” through individual actions, specifically diet and medication. Again, this in contrast to certain types of cancer, where adopting a different diet or lifestyle is believed to have no bearing on the spread of the disease. So when an individual with CD experiences a flare-up, they may feel shamed or stigmatized by outsiders’ advice to improve their diet to “cure” or treat their CD flare- ups. This puts a heavy burden on such individuals because they likely feel that symptoms are equated to a personal failing on their part for not doing enough to manage the disease. Melissa, a

46-year-old part-time psychologist, described society’s attitude towards the chronically ill, and specifically those who are uninsured or unemployed because of CD:

Especially, I don’t know. I think for some people there is, I think some people have this mentality of, well, if you are uninsured or if you are unable to work like a normal person, [that] somehow [the reflection] on you is the, um, [it is] somehow a choice or something that you did that [or] caused it. I think that sort of, um, like when a lot of us get unsolicited advice. Like, “Oh, you should try removing this or try this.” I think psychologically when people do that, it’s easier to basically say, “Oh, this was a choice that they made,” even if it’s an unconscious thing, because it’s scary. It’s scary to see somebody who is really sick, even if they don’t look sick, and [who] is now uninsurable because of that illness. Basically, it’s scary for other people to see [the chronically ill], and so I think it makes them realize deep down that it could happen to them and I think that is a scary process for most people … It’s their way of making sure that they are making the right choices and they won’t get sick, even though we didn’t choose Crohn’s, as we both know. But yeah, um, that idea that somehow you got sick … But that’s somehow a feeling on your part, basically, and I think there is a part of society that maybe not consciously but subconsciously does feel that way. That somehow we deserve what we are getting, basically. I have to admit it. I mean, I played into that myself for the first, I don’t know, three to four years after been diagnosed.

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Melissa’s narrative illustrates the labelling of the chronically ill as deviant, and how non-

sufferers may transform illness into an individual choice. Personal advice from others on which

foods to avoid (i.e., spicy, high fiber, fresh vegetables, popcorn, dairy, etc.) and incorporate (i.e.,

turmeric, aloe juice, herbal tea, probiotics, essential oils, etc.) serves two purposes: 1) to enforce

social control over CD illness behaviors, and 2) establish CD and chronic illness as the result of

personal choices rather than organic causes. At the end of her narrative, Melissa stated that she

believed that she was causing her CD to be better or worse, and that she deserved to be ill with

CD. Like many participants, Melissa internalized the social belief about the controllability of

CD, which likely increased her burden of personal responsibility for controlling the disease’s

activity.

The burden of personal responsibility and health-related stigma of CD are likely

compounded for those who have an ostomy.10 Some participants described feeling degraded as

the result of the stigma associated with an ostomy bag. Katelyn, age 46, was on disability from

her work as a radio producer. She shared her experience of getting an ostomy, and the associated

stigma. In her words:

So, I hated my ileostomy at first. I called it Mount Spew. I didn’t want it. I didn’t like the idea of it. You know the stigma behind an ostomy. Um, [its] degrading, anyway, that you’ll have a bag of shit on your side. And I’ve had people say to me, you know laugh at me, before I got the ostomy. “Oh yeah, one day you will end up with a bag of shit on your side.” You know, and how dirty it is, that it’s unsanitary … that you will just … you’re a complete failure because you couldn’t save your insides [and] you ended up with this horrific thing on your side. That kind of stuff.

10 “Causes a change in the way urine or stool exits the body as a result of a surgical procedure. Bodily waste is rerouted from its usual path because of malfunctioning parts of the digestive system. An ostomy can be temporary or permanent. Ostomy surgery is a life-saving procedure that allows bodily waste to pass through a surgically created stoma on the abdomen into a prosthetic known as a ‘pouch’ or ‘ostomy bag’ on the outside of the body” (United Ostomy Associations of America, n.d.). 145

Often, medical professionals recommend that patients name their ostomy site to promote

ownership and acceptance of a new way of eliminating solid waste. Katelyn described both the

stigma associated with the ostomy appliance itself, and the feelings of moral failure for needing

the ostomy surgery to control the progression of her CD. Again, the theme of perceived

controllability is evident, both in the well and unwell. For some participants like Katelyn, having

to succumb to surgery felt like a failure, like they were unable to control the disease through

medication and diet alone. According to respondents, there is a public perception of CD, that the

disease is or at least can be controlled or exacerbated by diet and lifestyle. This puts a heavy

burden of personal responsibility on sufferers for controlling an organic bodily disease. As a

result, an increase in disease activity (e.g., flare-ups, fistulas, abscesses, etc.) becomes a

character blemish or personal failing. Furthermore, surgery and the ostomy make CD visible, and

tax the individual with a permanent object, reminding them that they are unwell and reside in a

non-normative body. Along with a non-normative body comes the stigma of the ostomy itself, as

being dirty, unclean, and smelling of feces.

Similarly, other ostomates11 also expressed concern about smelling bad in public.

Brooklyn, age 46, was on disability after working as an accountant for an IT company. She

shared her experiences regarding the stigma she felt for having an ostomy, stating:

Yeah, I mean, the [ostomies] are rather gross. Like, I didn’t feel clean. You know, I felt, like, so crummy and stuff, and didn’t want to have sex. It was bad. Well, to me, to me it was embarrassing. I am just like: “I hate this thing. I hate this thing. I hate this thing.” I really, really, I really hate it. You know, it’s like I worry smelling a lot like pooh … It’s an open pouch. I would have to drain it, and there are times that it gets so full that the stool oozes out of [the] flange and, yeah, then I will be like, ah, a big, big mess.

11 A person who has had an ostomy, a communal term used to provide a collective identity and sense of belonging in specific support groups 146

I have to change clothes and then sometimes it goes on the floor in the bathroom because I’m trying to change and [there’s feces] still coming out. That’s really stressful and hard. I’m always scared that somebody can smell me. Again, the stigma of being unclean and smelling of feces is evident in Brooklyn’s narrative. Like many participants with and without an ostomy, she internalized the stigma of an ostomy bag as being dirty, and included herself as a person who was dirty, unclean, and unworthy. This was evident in her social withdrawal and how she avoided physical intimacy and sex. For some participants, the ostomy bag served as a physical reminder of their personhood being stained or unclean.

In summary, the stigma associated with CD has many aspects, but fundamentally it can be simplified as the: 1) perceived controllability and curability of CD through diet alone, and 2) the internalization of the perception that CD patients are unclean due to intestinal problems, fecal incontinence, or ostomies. These stigmas may be a barrier to disclosure and help-seeking for those living with an invisible illness like CD. Disclosure of CD or any invisible illness is risky, because it changes the individual’s identity from discreditable to discredited. By making their disability known and visible, they risk negatively affecting their social identity at work. The question, then, is what motivates persons with CD to disclose in the workplace.

Finding 2: Disclosure as a Means of Implementing Values I found that most participants preferred to disclose their invisible illnesses in their places of employment. My results show that the interviewees were likely motivated to disclose by a desire to implement their values, an increase in the severity of their CD, or the need for accommodations at or leave from their jobs. A positive work environment facilitated disclosure in those cases in which participants felt understood and supported by their managers and coworkers. They expressed a desire to normalize IBD and combat the stigma associated with

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gastrointestinal disorders. To achieve these goals, some suggested increasing the dialogue about what it means to work with an invisible disability. Not all participants in this study chose to disclose, however. A few engaged in efforts to cover and pass as healthy, in order to avoid having to discuss their disease with their workmates. The perceived stigma associated with CD served as a barrier to some, as doing so would have implications for their self-management of their illness at work. There is a need for targeted programs that address peoples’ understanding of invisible disabilities and the promotion of accurate information about IBD. These programs would assist in decreasing the public stigma surrounding gastrointestinal disorders specifically, and invisible illnesses and disabilities more generally.

Implementing Values The implementation of values was the first theme that emerged from the data to explain why individuals disclosed their chronic illnesses in their places of employment. Personal values often motivated the decision to disclose. Three values emerged from participants’ (n = 24) narratives, including: valuing education for social change, a desire to be honest, and the pursuit of empowerment. These disclosures were voluntary and proactive. Notably, disclosing not only made their conditions visible, but also helped them to cope with chronic illness by connecting their individual experiences to a larger sense of promoting ownership and reducing social stigma.

1.) Valuing Education for Social Change Educating others for social change was the first value that emerged from the data.

Participants reported that their disclosures gave meaning to the uncertainty that chronic illness can impose. Some felt it was their duty to proactively disclose their conditions in order to be understood by others and combat the stigma associated with CD. Seth, age 25, was working full time as an occupational therapist. He described the obligation he felt to disclose, in order to

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prompt a public discussion about invisible disabilities and the stigma associated with a “pooping disease.” In his words:

I’m typically pretty open about it. I’m quite motivated by and recognize the benefit of actively dialoging about things. I think it’s not good when we have these hidden illnesses that we don’t talk about. We need to talk about it. We need to have people actively out there admitting what they have and being fine with it, and owning it. The more that we hide it, the greater the chances of [the] stigma continuing. Seth highlighted the need for more people talking about their hidden or invisible illnesses in order to actively create a positive work environment. Importantly, his narrative addressed participants’ overall desire to be understood. Like Seth, some respondents attributed covering an illness or passing on the job as a way of increasing the stigma about CD and other invisible illnesses. Seth continued:

But I think as we become more, as society progresses, I am very optimistic. I mean, our intention [is] on moving forward in terms of what we accept and what we understand. So, I think that it’s a good time to be seen with [a] chronic disability because it is the time where we can talk about it. To be “seen” with a chronic disability like CD necessitates participants disclosing their illness to others, which may be risky, as coworkers and/or managers may not legitimize their illness or the associated suffering, or worse, unlawfully terminate their position.

Other respondents also commented on the significance of proactively disclosing CD at work. Annabelle, age 24, worked full time as a secretary. She preferred that coworkers and employers ask her directly about her condition, rather than spread rumors or gossip behind her back. She described what motivated her to disclose, saying:

Now, I like, it doesn’t bother [me], because I feel like I’m kind of like advocating and teaching people about it. So, I don’t mind it. I kind of like it, because I feel like the more people will know, the less, like, taboo it is, the less people will ask or, like, whisper secretively about it or lie. Either they will be upfront and open about it and [I] like to tell them. I kind of like it.

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Annabelle connected her individual disclosure to a broader impact of advocating and teaching others at work. Her narrative also described the broader impact of individual disclosure on destigmatizing CD in the workplace. Proactively sharing information about CD served to inform others and, in return, make CD less taboo or the topic of workplace gossip. Other participants also viewed disclosure as having a larger impact beyond one-on-one disclosure interactions.

They described the mitigating effect that disclosure had on defining CD as taboo; by talking about it openly, it became more acceptable and common in the workplace.

Some participants were motivated to disclose in order to support others who had CD or similar chronic illnesses at work. Addison, age 27, fully disclosed the nature of her illness at her job as a full time academic advisor for undergraduate students. She described using ideal situations to disclose as “teachable moments” to help students with chronic illnesses feel understood. In her words:

I also have most of my coworkers [who] know my situation, because I’m going to [be] an open book about it. I’m not shy about it, or I’ll talk to whoever wants to listen. So I really like that impact that I’m able to have on students. And I just thought it’d be really, well, like really good for them to have someone to talk to that knows what they’re going through. I think you use those teachable moments. Addison made connections between her individual disclosures to students and the broader impact of educating others and providing emotional support for students dealing with chronic illnesses during college. She continued, describing how she used her past experiences with CD to encourage her students to pursue their educational and career goals:

So, I think I’m in a very unique career where I can help students who were my age when I [was] diagnosed and were … my age from when I was going through everything in the works of it, and being able to tell them, like, “Listen, I was still able to finish my, not only my undergraduate degree, but I also received my master’s [degree].”

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Addison highlighted the broader impact her disclosure had on the students with which she worked. She relied on past experiences with her disease to disclose and thus encourage struggling students. Importantly, she pointed out that her career field and age both facilitated her decision to disclose. In the narratives above, participants highlighted the importance of disclosure in the workplace to decrease the stigma of invisible illnesses, increase open dialogue, and provide social support to fellow sufferers. Importantly, “educational disclosure” is one self- management technique used to cope with the cultural stigma associated with CD.

2.) Valuing Honesty Honesty is the second value that was found to motivate participants to disclose in the workplace. This theme represents those respondents who felt that their condition necessitated being honest with employers. These participant disclosures were voluntary and could include either their managers alone (i.e., partial) or also their coworkers (i.e., full). Respondents fitting this theme carefully disclosed during the application process. By doing so, they risked discrimination by the hiring manager and might not have been offered the job, because of their illness. Katie, age 41, worked part-time from home as a charity fundraiser. She explained how honesty motivated her disclosure at work. In her words:

So, this place that I’m working for now, I am always straight up with people because I have really bad flares. But then, you know, I’ve [got] lots of doctor’s appointments to tell them that I have Crohn’s. Katie was up front with her employers during the application process. She dealt with many health complications associated with CD, including chronic pain, fatigue, and osteoporosis, all of which affected her performance and attendance at work. This straightforward approach during the interview process was shared by other participants, as well. Faith, age 29, worked as a middle

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school math teacher. She described her motivation to fully disclose: “I always try to be upfront

[and] honest about it.”

Other participants were more reluctant to disclose before getting hired. Addison, age 27, described how being unlawfully terminated at a previous job made her more reluctant to disclose her illness during the hiring process; she feared discrimination. Motivated by her valuing of honesty, though, Addison chose to partially disclose during the interview process. She explained:

So, I was very honest with them. I said “I’ll be 100% with you,” and I went into surgery and how I was released from my responsibility there because I needed surgery within that six- month probation period. But it was definitely sooner than I normally would have told them. [It] was during the application process, but they know about it. Addison carefully timed disclosing her illness to her employers. In the past, she had waited until she was settled at her job. Yet a change in jobs also changed the context of her next disclosure, prompting Addison to share her health information earlier. The narratives above demonstrate participants’ desire to be honest and not hide their illness. Importantly, “honest disclosure” is another self-management strategy used to cope with a discreditable illness identity in the workplace.

3.) Valuing Empowerment A final value that was found to motivate participants to disclose in the workplace was empowerment and a sense of control over their private health information. Brittany, a 27-year- old full-time medical assistant at a chiropractor’s office, described the sense of control she gained from being able to choose to whom and when to disclose. Overall, she viewed the invisibility of her CD as favorable, because she did not want “special treatment” or recognition of being different. In her words:

I think the overall … positive thing is you’re going to choose as the patient. Like, “Do I disclose? Do I not?” … Like, I get to show my scars or I don’t. I kind of like that I have 152

that choice. I really like that [my Crohn’s] is invisible, so … it gives you, like, a sense. At least it gives me a sense of empowerment of, like, I get to share. I get to have some control in this. I’m not in a wheelchair and everybody treats me different. Like, they don’t have to know I’m different. I get to choose. Brittany revealed feeling uncertain and not completely in control of her body at times, as did all participants in this study. For Brittany and certain other participants, though, disclosure offered a sense of control over their CD through self-management of the stigma by engaging in selective disclosure. Notably, her narrative highlights that CD and other disabilities can make one feel

“different” and abnormal, and therein lies the need for information control and self-management at work.

Some participants reported that their disclosure was motivated by a desire to take ownership over their CD. Katelyn, age 46, had many opportunities to disclose over the 27 years she had lived and worked with CD. She used to work sporadically as a radio producer, but at the time of her interview was on disability. She explained that her motivation to disclose stemmed from a valuing of control over and ownership of her condition:

Because if you can get past the fear of telling people about your disease and what they are going to think, and look at it [as] more of a way of ownership, it helps you deal with it better. The more I’ve talked about it, the more I’ve owned it. Ownership is apparent in the participant narratives, with many respondents valuing empowerment and control. Katelyn’s narrative clearly shows how to her, ownership was an important aspect of coping with CD (i.e., “dealing with it”). Her description also underscores that disclosure can be a risky event, as evidenced by participants’ fear of coworkers’ reactions that might discredit or further stigmatize them. For some interviewees, empowerment came from being able to choose when, how, and to whom they revealed their invisible illnesses. Others viewed workplace disclosure as an empowering process that necessitated overcoming the fear of

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others’ responses and ultimately resulted in an improved ability to cope, both inside and outside of work.

Finding 3: Disclosure Motivated by Severity of the Illness and Treatment

The second motivator surrounding workplace disclosure was an increase in symptom severity or treatment schedule. Respondents (n = 23) reported disclosing following either or both. Disclosures tended to be reactive responses to when symptoms became more visible, especially in the workplace. Charlie, age 35, used to work as a nursing assistant in a home care facility. His decision whether or not to disclose in the workplace varied depending on his perception of his managers’ understanding and the type of work he was asked to do. He shared that he had “had more jobs than I am old.” Over the years, he received mixed reactions from his managers after disclosing his illness, explaining that many previous managers had either neutral or dismissive reactions. Once, while working at a nursing home, he chose not disclose. He explained how a flare-up of symptoms at work, however, made his illness visible to his coworkers and employer. Charlie stated:

It was getting so bad, like I’d have to like pause in the middle of the hallway, and all the nurses were like, “Are you okay?” … I would not stop throwing up … Well, I finally had one of my employers take me to the ER. Charlie could no longer hide his symptoms. He disclosed to his boss that he had CD and that he needed to go to the hospital.

Participants also reported acute episodes or flare-ups of the illness that impinged on their work capacity and attendance. The often-recurrent nature of CD flare-ups means that disclosure is also a reoccurring choice. As is evident from Charlie’s narrative, an increase in severity or frequency of symptoms makes a disease more visible to others while on the job. Addison, age

27, spoke of a prior work experience where she chose not to disclose her CD to her employer

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until she was eligible for medical (i.e., FMLA) benefits. During this time, however, her CD became more severe and, as a result, Addison was forced to disclose in order to explain her absence from work. In her words:

I was also getting abscesses12 probably, well in the beginning, once or twice a month, and then it was going to like once a month, So in that time I also got a new job. So to make sure my job was secure, I told my doctor, like, I’d like to be at my job a year, so that I’m eligible for FMLA before having the surgery. So, my surgery was going to be in June, 2015. In April of 2015, I had an abscess formed that was the size of like a tennis ball. I was in excruciating pain. I ended up out of work for like two weeks. I had a drain13 in for a week.

Addison was reluctant to disclose her illness before she had been at her new position for a year.

Unfortunately, she developed large abscesses, or pockets of infection, that needed surgery and more than two weeks of recovery at home. Consequently, her worsening condition forced her to partially disclose her illness to her manager in order to excuse the absence.

Participants who were in remission (e.g., experiencing few to no symptoms of CD) still described times when their CD might become visible at work. These included the types and scheduling of treatments. All participants took medication to manage their CD. Some medications are more visible than others, as they require going to an outpatient facility to receive an IV infusion, while other medications can be taken at home with an injection. Suzie, age 45, was in remission and received infusions every eight weeks at a hospital, as well as occasional iron infusions. She explained how her illness was more visible around treatment times, but otherwise she could keep it hidden. She disclosed to her employer when she needed a day off:

But I just tell them that I’m going to be home. I do, I have an infusion for my Crohn’s and I just, uh, kinda throw it [in] there. I definitely don’t hide it … It’s just … I don’t … Well, I am, depending on when the infusion is, I guess.

12 Infected cyst or boil; a complication of CD. 13 A surgical drain is a tube used to remove pus, blood, or other fluids from a wound. It is both painful and visible. 155

Notably, Suzie highlighted that she did not actively work to hide her illness from her colleagues, and it could remain hidden until she had a treatment. She directly explained to her boss that she needed a day off to receive an infusion at home for her CD. Other than at treatment times, Suzie did not discuss her illness while at work. Other participants also used the visibility of their treatment schedule as a reason to disclose their illness at work. Savannah, a 51-year-old woman who worked full time at a factory, chose to disclose her CD selectively, first to her managers and then to her coworkers, as she grew more comfortable. At the time of her interview, she had recently begun a new job, and described the stress that accompanies a new position, coworkers, bosses, and schedule. She told of a time when she decided to partially disclose to her boss when she needed an infusion to manage her CD, saying:

So, I’m probably six or seven weeks before I had an infusion scheduled. So, when I requested the day off from my boss, that’s when we had a conversation about it. Because it was like, “Are you doing something fun?” I’m like, “Well, you know, if you’ve got a few minutes … I’ll tell you what I’m doing.” So, that’s kind of how it came up.

For some participants, specifically those in remission, disclosure at work may not be a significant event. Savannah explained that her illness did not significantly impact her work capacity. She shared that most days her disease was hidden from her boss because she was able to get her work done. In her words, “So, it’s not a big deal as long as the work gets done. That’s what matters.

There are definitely days where she doesn’t see it at all because it’s just not an issue.”

These participant accounts reveal that the unpredictable nature of CD can at times make the illness more visible, while at other times it can remain hidden or even invisible. An increase in severity or flare-ups was often what forced participants to disclose in the workplace. Infusion treatments also made CD more visible, presenting an opportunity to disclose the reason for requesting a day off. Since treatments and flare-ups of the disease are reoccurring events,

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disclosures likely involve more than one occasion, supporting Toth and Dewa’s (2014) looping disclosure process.

Finding 4: Disclosure as a Means to Receive Accommodations

A final motivator of workplace disclosure is participants’ (n = 12) need for accommodations at work or medical leave under FMLA. This theme is similar to the previous, as the need for both is usually due to an increase in severity of their symptoms. Accommodations include, but are not limited to, participants reducing their number of working hours per week, asking to work from home, and/or needing better access to a restroom. Katie, age 41, had already disclosed her illness in a straightforward manner during the hiring process. However, she needed to discuss her condition with her boss again. Her CD had deteriorated to the point where she needed to work from home. Additionally, she asked her boss to work fewer hours. In her words:

“I am not supposed to work 40 hours a week because it’s too much on me. I’m supposed to do 20 hours a week.” For Katie and certain others, disclosure was not a one-time event. She disclosed her illness again in order to work fewer hours and from home.

Other respondents also reported getting official recommendations from doctors or psychologists to work fewer hours. Diana, age 51, worked as a part-time cashier at a local grocery store. She was awaiting a second disability hearing to determine her eligibility to receive social security benefits and income. She described receiving accommodations for her CD while at work, stating:

Okay, my psychologist recommended that I not work so many hours. He did not think that was healthy for me. So I went to my regular doctor and he agreed that we, between the three of us, we came up with … working 15 hours. Yeah, and I have a bathroom right here [at] my [cashier’s] check stand, so if I need to [go to] the bathroom, I go to the bathroom.

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Diana first worked with her medical team to figure out appropriate accommodations. She then approached her manager with her solution, which was legitimated by two medical professionals.

Diana shared that having official documentation of her illness from both a psychologist and a physician made asking for accommodations at work easier, since she did not have to prove that her illness was real. Disclosing at work to receive accommodations was likely a self- management strategy for dealing with her illness in the workplace.

Other participants also reported that the stress of a particular job and working long hours exacerbated their symptoms. Madeline, age 52, was on disability at the time of her interview.

She had previously worked as a supervisor overseeing other high school teachers. She explained how her stressful job negatively impacted her ability to meet her work demands. She was forced to disclose her illness when she applied for social security disability (SSD). In her words:

Yeah, I was working like lots and lots [of] hours … So then I often went to work and I was in a very stressful job, and it eventually caught up with me, and then … in June 2014, my flares and everything were so bad … Everything was just really diminished. I filed for disability right away … because I felt that I was [at] the beginning of the end. You know, not the end end, but the end of my working, and I could tell. [emphasis in the original] As a supervisor, Madeline did not disclose her CD to her coworkers or supervisors prior to her needing to go on disability. As her condition became progressively worse and more visible to her colleagues, she was forced to disclose in order to explain her absences and get further medical leave.

Interestingly, other respondents who worked in management positions also reported a tendency not to disclose at work. Cindy, age 39, worked in finance and managed multiple illness complications including arthritis, chronic hip pain, and acid reflux disease. She consistently did

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not disclose her illness at work, and actively worked to conceal it. However, during a particularly bad flareup, she was forced to disclose her CD in order to get FMLA benefits. She described:

I worked for a life insurance place for 15 years. The last two years I was there, I worked in claims and I had to get a family medical leave because I just, there [were] days I could not get out of bed. I was either just way too tired, like I felt like I didn’t sleep for a week, or my hips were hurting and I couldn’t walk. So I had to get on that, and it was kind of embarrassing to get on something like that because I was a boss at that time. Like, how can I expect my employee to come to work every day and do her job when I can’t even come there and do my job? Cindy expressed feeling like a bad boss because she could not live up to the expectations she had for herself and her employees. She described the experience as “frustrating” because she was not meeting expectations at work. She also shared that her employees were upset by how many days of work she missed. Other participants also noted that their coworkers noticed their absences, especially since they were often asked to fill in or complete respondents’ work duties.

Needing accommodations and medical leave necessitated disclosure; sick leave and other benefits were not possible without at least some limited revelation. Participants reported that disclosure was not a one-time event, since CD symptoms are unpredictable and may be more or less visible depending on the illness severity at the time. The disclosures discussed here tended to be reactive responses to the illness worsening and interviewees’ conditions becoming visible in the workplace. Importantly, the results show that disclosing at work to receive accommodations is a prominent self-management strategy for dealing with illness in the workplace. In the previous section on values, disclosure is was also found to help participants cope with their invisible illnesses by connecting discrete illness experiences to a larger discussion of invisible disease in the workplace and a general reduction of the social stigma associated with CD.

Finding 5: Work Environments that Promote Disclosure

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Disclosure was often motivated by a desire to enact a particular value or an increase in the severity of a particular participant’s CD. Respondents (n = 27) also explained how a positive work environment facilitated their disclosure. In these narratives, interviewees described three factors that together comprised a positive work environment that facilitated disclosure, including: a small number of coworkers, a family atmosphere, and bosses who understood the severity of

CD as a disease. Participants who perceived their work environments to be understanding and nonthreatening were also likely to be more comfortable and willing to fully disclose. Annabelle was a 24-year-old full-time secretary, who explained that her work environment made her feel comfortable enough to share her private health information without feeling stigmatized. In her words:

[There are] maybe like 12 people at tops who work there. So it’s very family oriented. This is like a real family atmosphere and that’s why I really like it. I don’t feel uncomfortable telling them about my current deal when I’m sick. It’s just nice. Similarly, Addison, age 27, spoke of the value of the family atmosphere at her work, saying,

“My job is very understanding and they, again, it’s a very family atmosphere there.” Participants described a “family atmosphere” as one that included business practices and policies that emphasized trust and understanding.

Participants also reported that family-oriented workplaces made disclosure at work less risky, as positive environments were less likely to inspire fear of job termination related to illness. Respondents also shared how understanding and compassionate bosses promoted disclosure. Melissa, age 46, worked part-time as a psychologist. She described how she felt comfortable openly discussing her illness during the job interview because she believed her future boss, Earl, to be an ethical worker.

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Earl is a very nice man. He’s very family oriented, very, you know, he’s just a really good guy. He’s probably the most ethical attorney I’ve ever known in my entire life, which is important to me … We worked [the terms of employment] out. I basically just told them what was going on and the situation. Melissa asked for the accommodation of being able to work from home when needed, as a term of her employment; this was a request she felt comfortable making of her new boss, given the positive work environment.

Other respondents reported that supportive bosses who understood the severity and unpredictability of CD promoted disclosure in the workplace. Charlie, age 35, worked part time as a gas station attendant. He shared that he had a hard time holding down a steady job over the years, in part due to intolerant or ignorant managers. His work environment at the time of the interview supported him disclosing and asking for emergency accommodations. Charlie noted that this support was not available in his prior job, a temporary position in construction work. He explained:

Yeah, the job I have now, they are the coolest, best job I’ve ever had, and the coolest, best bosses. There [have] been times that, like, with the time of emergency, they are just like, “Go! What are you doing here?” Or, you know, and they really understand, like, they understand. Participants’ evaluation of their bosses’ level of understanding of chronic illness deeply influenced their decision to disclose. Interestingly, some occupational fields such as healthcare appeared to better lend themselves to disclosure than did others. Respondents’ shared that they felt comfortable disclosing because generally their bosses were understanding of their chronic illness.

For example, Molly, age 28, worked as a full-time nanny for two ER doctors who seemed to “get it.” Similarly, Suzie, age 45, noted:

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I am very lucky to work for a health policy fellowship. The people I work for are fantastic and so understanding and appreciative and would do anything for me. Some participants felt that working in a health-related field made disclosure easier (n = 10). They perceived that their bosses understood because of their work experience with healthcare. Some interviewees, like Melissa and Molly, specifically chose their jobs based on their belief that their bosses understood CD. These participants’ accounts show that a positive work environment includes a small number of coworkers, family atmosphere, and bosses who understand the severity of CD.

Discussion Although previous research has found that people living with chronic illness do not disclose their health status at work, I found evidence that the chronically ill do disclose in the workplace and, furthermore, that their motivations to do so extend beyond the need for work accommodations and medical leave. To further investigate their reasons for disclosure, I used

Goffman’s theory of stigma (1959) to frame an analysis of the potential risks associated with workplace disclosure, including stereotyping, damage to work relationships, discrimination, and job loss. My results show that participants were likely motivated to disclose by the need to implement the values of education for social change, as well as the pursuit of honesty and a sense of empowerment. I argue that these values are a means of attaching meaning to their illness experiences by connecting their individual understanding to larger social norms about illness and disability at work. Furthermore, my results confirm that disclosure is a self-management strategy used in the workplace. An increase in the severity of CD symptoms, experiencing visible symptoms at work, and needing ADA accommodations or leave were all driving factors behind their workplace disclosure. I also found that a positive work environment facilitated disclosure,

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especially when participants felt understood and supported by their managers and coworkers. I found that disclosure was one way of normalizing IBD and combating the stigma associated with gastrointestinal disorders. Thus, workplace dialogue needs to be inclusive and embrace what it means to work with an invisible disability; also, accurate information must be shared regarding the biological nature of the illness and its treatment. I argue that stigma is a useful concept for examining the workplace behaviors of those living with invisible chronic illness; however, I also believe that stigma is not the most substantial driving factor behind disclosure, as other research has put forth.

My findings contradict current conceptualizations of stigma as the driving force behind choosing to disclose (e.g., Corrigan, 2003). Current research has posited that people living with an invisible chronic illness work to keep it hidden to avoid being labelled as an unexpected worker, lazy, or malingering (see Barned, Stinzi, Mack, & O’Doherty, 2016; Beatty, 2012;

Gignac & Cao, 2009; Munir, Leka, & Griffiths, 2005; Schneider & Conrad, 1980; Scambler &

Hopkins, 1986). Researchers have concluded that disclosure of an invisible illness occurs only when the individual is forced to do so (Kaushansky et al., 2016; Vickers, 1997). In contrast, I found that those living with an invisible chronic illness chose to disclose out of the desire to implement certain values. These values served as a means of attaching meaning to their illness experiences by connecting their individual experiences to larger social norms about illness and disability at work. I found that most people living with such diseases chose to disclose, and in doing so, reaped certain benefits, including: attaching meaning to their disruptive illness experiences through the implementation of values, an increase in self-esteem and perceived control over their illness, and a sense of empowerment. Meaning-making, self-esteem, and control over one’s disease are important factors in promoting overall wellbeing, psychosocial

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adjustment, and a better quality of life (Harrison, Falvo, Weiss, & Holland, 2017; Kralik, Koch,

Price, & Howard, 2004; Vaingankar, Subramaniam, Abdin, He, & Chong, 2017; van Dongen,

1996). Those who regularly engage in self-monitoring of their motivation, experiences, functional abilities, and the support available tend to experience a better quality of life and lower mortality and hospital readmission rates compared to those with poor self-care (Jaarsma,

Cameron, Riegel, & Stromberg, 2017). Thus, promoting disclosure at work has benefits extending beyond immediate practical legal protections or workplace accommodations, and to my knowledge, this has not been previously discussed in the literature.

My findings also show what a positive work environment is essential to people living with chronic illness. The tangible resources identified include business practices and policies that emphasize trust and understanding (i.e., a “family atmosphere”). Perceived and received social support from bosses were important factors fostering trust, and in return, disclosure. I found that a small number of coworkers and managers who were understanding regarding participants’ chronic illnesses also created a positive environment that fostered inclusivity. While these changes in the work environment seem like common sense for promoting inclusivity, research has shown that employers continue to maintain negative attitudes towards employees living with chronic illness. Jacoby and colleagues (2005) found that employers maintained negative perceptions of those working with epilepsy (e.g., a risk of harming others, seizure frequency, and controllability) and expected people living with chronic illness to disclose their condition before hiring, despite the ADA’s laws against discriminatory hiring and firing. Similarly, other research has found a discrepancy between employers’ expressed willingness to hire applicants with a chronic illness or disability and the actual hiring rates (Hernandez, Keys, & Balcazar, 2000).

Misinformation with regards to the nature of chronic illnesses, misconceptions about the

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productivity of people living with chronic disease, and discriminatory workplace structures all contribute towards the relatively high unemployment rate and disability status of those with CD.

I posit that a positive work environment, one based on mutual trust and understanding, likely reduces the potential for discrimination towards people living with a chronic illness and promotes self-disclosure.

Significance and Future Research

Illness stigmatization among inflammatory bowel diseases (IBDs) is poorly understood

(Taft, Ballou & Keefer, 2012). My research on the internalized stigma that participants reported adds to Taft and colleagues call for more research on internalized stigma and stigma resistance strategies. Importantly, participants used disclosure as a blunt refusal of the stigma they feel that society imposes on those living with a chronic illness. This positioned respondents as active agents not only in their work duties, but also in their management of their workplace illness identities. It also gave them the opportunity to work towards combatting the stigma they felt and perceived. Stigma may still continue to be a barrier to disclose for some; however, my findings show that enacting values and received support following disclosure outweigh the potential risks of disclosure. The instrumental (e.g., work accommodations, flexible hours, working from home, etc.) and social support (from both coworkers and managers) that the interviewees gained from disclosing offsets the perceived stigma and their past experiences with discrimination. There is burgeoning evidence to corroborate this. Frohlich (2014) examined support and stigma across life events (e.g., romantic relationships, work, school, and surgery) and found that support offset the stigma of IBD, and many people living with chronic illness had positive experiences following their disclosure.

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I think an interesting avenue of research would include measuring the public’s attitudes about people living with a disabling, invisible chronic illnesses. How do the experiences of the discrimination against the unhealthy disabled compare to other types of discrimination? Further, what effect does experiencing discrimination have on someone who already has health difficulties? In other words, what are the cumulative effects on a sick person’s health? One study found that “[p]reference for people without disability compared to people with disabilities was among the strongest implicit and explicit effects across the social group domains” (e.g., gender, race, religion, sexuality, weight, political orientation, etc. [Nosek et al., 2007]). In response, I would like to conduct a study looking at the impact of media campaigns on perceptions of IBD.

More specifically, I wonder how influential the pharmaceutical ads for biologics are in defining public perceptions and attitudes toward IBD. Similarly, are the campaigns “Escape the Stall” and

“You are not alone” created by the Crohn’s and Colitis Foundation (CCF) effective in destigmatizing having these gastrointestinal diseases? (see www.crohnscolitisfoundation.org ;

Sober, 2013).This is an important research question because both public misinformation and internalized stigma are key factors in people with CD experiencing poor health outcomes, including health-related quality of life, psychological distress, self-efficacy, and self-esteem

(Taft, Ballou & Keefer, 2012). Also, according to a large web-based survey, knowledge about

IBD is significantly low, with 85% (n=1026) people inaccurately answering two-thirds of the questions pertaining to IBD (see Groshek ey al., 2017). As such, given the high rates of the stigmatization of IBD, I suspect that the CCF campaigns are not effective and/or do not reach enough Americans to make an impact in public attitudes In fact, 11% (n=133) of people surveyed had no familiarity with IBD (Grosheket al., 2017). I conclude that greater efforts must

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be taken to stymie IBD misinformation across all forms of media, but more specifically in social media channels, to increase accurate IBD knowledge and, thus, reduce stigma surrounding IBD.

Limitations

This study had a few benefits and drawbacks that are worth noting. First, this was a relatively large sample size for a qualitative study. The sample (n = 35) was large enough to support research claims by reaching theoretical saturation, but not too large to prohibit a deep, case-oriented analysis, which is the primary advantage of qualitative inquiry. The sample was diverse in terms of employment status, education level, disease severity and length, and disability status. This variation helped the author form a picture of a working-age population of Americans living with CD.

While there were some strengths, there were also a few limitations that are worth discussing. First, these narratives were retrospective accounts of experiences of living with a chronic illness. Notably, the sample lacked racial and ethnic diversity. IBD is more prevalent in

Caucasians, especially those from northeastern Europe. There is also a higher risk of people of

Jewish decent having IBD (Loftus, 2007). However, the rate of diagnosis in African American patients is on the rise, approaching the rate seen in whites (see Betteridge et al., 2013). Research has shown some biological differences in pathology (see Basu et al., 2005), which may lead to different treatment approaches. Regardless of disease specification, both African Americans and whites were equally informed about CD, but white patients felt that their disease was under

“good” control a greater percentage of the time, 71% of whites versus 58% of African Americans

(p = 0.04) (Jackson et al., 2008).

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Still, racial differences in disclosure are likely to exist. Studies have shown that whites are more likely to disclose their IBD status at work to both managers and coworkers (Finlay,

Basu, & Sellin, 2006). Taking an intersectional approach, one that includes the impacts of race, class, and gender, would likely address the influence of power and status dynamics that impact who will disclose in the workplace. When addressing disclosure and concealment at work, the workplace culture and environment should also be assessed to inform targeted interventions aimed at eliminating discriminatory structures that not only contribute to disproportionate unemployment rates, but also perpetuate negative workplace stereotypes of people living with chronic illness.

Another consideration with regards to the sample is bias in terms of self-selection. The sample was predominantly female, which is not surprising considering women are more likely to engage in helping behaviors (Salminen, 1992). One study found that people were significantly more likely to use online support groups if they suffered from a chronic illness such as stroke

(OR = 3.03), cancer (OR = 2.86), diabetes (OR = 2.96), or arthritis (OR = 2.52) (Breen &

Rowland, 2010). Such individuals were more likely to have higher incomes, use other complimentary strategies, and have worse health statuses. Interestingly, Latinos were less likely to use online support groups (OR = .02). There were no significant findings regarding gender.

Both men and women used online support groups, albeit for different reasons. For example, men were more than twice as likely to give information and women more than twice as likely to give encouragement and support (Klemm et al., 1999). The purposes behind participating appear to vary, as well. Information giving/seeking was ranked first in the prostate group, and personal experience took priority in the breast group (1999). Because the sample in the present research contained a majority of women, the few men’s stories that were included did not offer enough

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information to adequately draw any gender-based conclusions. A further limitation related to the sample is that it was a convenience sample, and therefore not generalizable to a wider population of individuals suffering from chronic illness. It can, however, offer an in-depth look at the challenges and barriers people living with an invisible chronic illness regularly face.

Finally, the narratives included in this study were based only on patients’ lived experiences, as was the intent. However, there were no narratives from physicians who provide care to those living with CD or other chronic illness. The patients’ narratives provide rich detail regarding the thoughts, emotions, and behaviors of individuals as they experience both their illness career and life course, and it was the purpose of this research to study the interplay between the two. As such, I discussed the feelings and thoughts they shared as they sought medical care. I did not, however, provide an account of their physicians, who undoubtedly had their own sets of beliefs about the treatment of chronic illness and, more specifically, CD.

Conclusion

With so many American workers living with chronic ailments, it is appropriate to study their experiences to better understand the facilitators of and barriers to maintaining employment.

Disclosure of an invisible chronic illness at work can be risky. Harassment can create a hostile work environment and force people to quit their jobs. Controlling both stigma and disclosure are crucial for job retention and avoiding discrimination and harassment (Fowler, 2011). My findings show that people with invisible illnesses do disclose at work for reasons beyond receiving accommodations or leave. The stigmatization respondents described in their narratives demonstrates a need for targeted programs that address the public’s understanding of invisible disabilities and the promotion of accurate information about CD. These programs would work towards decreasing public stigmas surrounding gastrointestinal disorders specifically, and

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invisible illnesses and disabilities more generally. Disclosure is one way in which people living with a chronic illness can be “seen” at work, and may combat the stigma that exists at the intersection of work and illness.

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REFERENCES

Abdullah, T., & Brown, T. L. (2011). Mental illness stigma and ethnocultural beliefs, values, and norms: An integrative review. Clinical Psychology Review, 31(6), 934–948. https://doi.org/10.1016/j.cpr.2011.05.003

ADA National Network. (n.d.). Learn About the National Network | ADA National

Network. Retrieved April 28, 2019, from https://adata.org/national-network

Barned, C., Stinzi, A., Mack, D., & O’Doherty, K. C. (2016). To tell or not to tell: A qualitative interview study on disclosure decisions among children with inflammatory bowel disease. Social Science & Medicine, 162, 115–123. https://doi.org/10.1016/j.socscimed.2016.06.023

Bautista, R. E. D., Shapovalov, D., & Shoraka, A. R. (2015). Factors associated with increased felt stigma among individuals with epilepsy. Seizure, 30, 106–112. https://doi.org/10.1016/j.seizure.2015.06.006

Beatty, J. E. (2012). Career barriers experienced by people with chronic illness: A US study. Employee Responsibilities and Rights Journal, 24(2), 91–110.

Beatty, J. E., & Kirby, S. L. (2006). Beyond the Legal Environment: How Stigma

Influences Invisible Identity Groups in the Workplace. Employee Responsibilities and Rights

Journal, 18(1), 29–44. https://doi.org/10.1007/s10672-005-9003-6

Benson, V., Saridakis, G., & Tennakoon, H. (2015). Information disclosure of social media users: does control over personal information, user awareness and security notices matter?

Information Technology & People, 28(3), 426–441.

171

Brohan, E., Henderson, C., Wheat, K., Malcolm, E., Clement, S., Barley, E. A., …

Thornicroft, G. (2012). Systematic review of beliefs, behaviours and influencing factors associated with disclosure of a mental health problem in the workplace. BMC Psychiatry, 12(1),

11.

Brohan, E., Slade, M., Clement, S., & Thornicroft, G. (2010). Experiences of mental illness stigma, prejudice and discrimination: a review of measures. BMC Health Services

Research, 10(1), 80. https://doi.org/10.1186/1472-6963-10-80

Burstein, D., Taft, & Keefer. (n.d.). Relationship Between Illness Disclosure, Quality of

Life, and Treatment Adherence in Inflammatory Bowel Disease Patients. 2.

Callahan, D. (2013). Children, Stigma, and Obesity. JAMA Pediatrics, 167(9), 791–792. https://doi.org/10.1001/jamapediatrics.2013.2814

Cameron, K., & Chouinard, V. (2014). On being a princess and a problem: Negotiating attitudinal barriers to chronic illness in Canadian universities. Working Bodies: Chronic Illness in the Canadian Workplace, 177–195.

CDC. (2016, December 5). CDC Winnable Battles Progress Report. Retrieved May 23,

2018, from Centers for Disease Control and Prevention website: https://www.cdc.gov/winnablebattles/report/index.html

Chandra, P. S., Deepthivarma, S., Jairam, K. R., & Thomas, T. (2003). Relationship of psychological morbidity and quality of life to illness-related disclosure among HIV-infected persons. Journal of Psychosomatic Research, 54(3), 199–203. https://doi.org/10.1016/S0022-

3999(02)00567-6

172

Charmaz, K. (2002). Charmaz / STORIES AND SILENCES ARTICLES Stories and

Silences: Disclosures and Self in Chronic Illness.

Charmaz, K. (2010). Disclosing illness and disability in the workplace. Journal of

International Education in Business, 3(1/2), 6–19. https://doi.org/10.1108/18363261011106858

Church, K., Frazee, C., Panitch, M., Luciani, T., & Bowman, V. (2008). Doing disability at the bank: Discovering the work of informal learning/teaching done by disabled bank employees. In The Future of Lifelong Learning and Work (pp. 147–153). Brill Sense.

Clair, J. A., Beatty, J. E., & Maclean, T. L. (2005). Out of Sight but Not out of Mind:

Managing Invisible Social Identities in the Workplace. The Academy of Management Review,

30(1), 78–95. https://doi.org/10.2307/20159096

Corrigan, P., & Matthews, A. (2003). Stigma and disclosure: Implications for coming out of the closet. Journal of Mental Health, 12(3), 235–248.

Crooks, V. A., Chouinard, V., & Wilton, R. D. (2008). Understanding, embracing, rejecting: Women’s negotiations of disability constructions and categorizations after becoming chronically ill. Social Science & Medicine (1982), 67(11), 1837–1846. https://doi.org/10.1016/j.socscimed.2008.07.025

Daker-White, G., Rogers, A., Kennedy, A., Blakeman, T., Blickem, C., & Chew-Graham,

C. (2015). Non-disclosure of chronic kidney disease in primary care and the limits of instrumental rationality in chronic illness self-management. Social Science & Medicine, 131, 31–

39. https://doi.org/10.1016/j.socscimed.2015.02.035

173

Defenbaugh, N. L. (2013). Revealing and concealing ill identity: A performance narrative of IBD disclosure. Health Communication, 28(2), 159–169.

Dennis, S. M., Zwar, N., Griffiths, R., Roland, M., Hasan, I., Powell Davies, G., &

Harris, M. (2008). Chronic disease management in primary care: from evidence to policy.

Medical Journal of Australia, 188, S53–S56.

Dunstan, D. A., & Maceachen, E. (2014). A theoretical model of co-worker responses to work reintegration processes. Journal of Occupational Rehabilitation, 24(2), 189–198.

Ellison, M. L., Russinova, Z., MacDonald-Wilson, K. L., & Lyass, A. (n.d.). Patterns and correlates of workplace disclosure among professionals and managers with psychiatric conditions. 13.

Facey, M. E., & Eakin, J. M. (2010). Contingent work and ill-health: conceptualizing the links. Social Theory & Health, 8(4), 326–349.

Feagan, B. G., Bala, M., Yan, S., Olson, A., & Hanauer, S. (2005). Unemployment and

Disability in Patients With Moderately to Severely Active Crohn’s Disease. Journal of Clinical

Gastroenterology, 39(5), 390. https://doi.org/10.1097/01.mcg.0000159220.70290.41

Fowler, H. S. (2011). Employees’ perspectives on intermittent work capacity: What can qualitative research tell us in Ontario? Deliverable #5 – Final report. Ottawa: Social Research and Demonstration Corporation. - Google Search. Retrieved April 27, 2019, from https://www.google.com/search?q=Fowler%2C+Heather+Smith.+(2011).+Employees%E2%80

%99+perspectives+on+intermittent+work+capacity%3A+What+can+qualitative+research+tell+u s+in+Ontario%3F+Deliverable+%235+%E2%80%93+Final+report.+Ottawa%3A+Social+Resea rch+and+Demonstration+Corporation.&oq=Fowler%2C+Heather+Smith.+(2011).+Employees%

174

E2%80%99+perspectives+on+intermittent+work+capacity%3A+What+can+qualitative+researc h+tell+us+in+Ontario%3F+Deliverable+%235+%E2%80%93+Final+report.+Ottawa%3A+Soci al+Research+and+Demonstration+Corporation.&aqs=chrome..69i57.280j0j4&sourceid=chrome

&ie=UTF-8

Frohlich, D. O. (2014). Support often outweighs stigma for people with inflammatory bowel disease. Gastroenterology Nursing, 37(2), 126–136.

Gignac, M. A. M., & Cao, X. (2009). “Should I tell my employer and coworkers I have arthritis?” A longitudinal examination of self-disclosure in the work place. Arthritis Care &

Research, 61(12), 1753–1761. https://doi.org/10.1002/art.24889

Goffman, E. (1963). Stigma: Notes on the management of spoiled identity. Simon and

Schuster.

Groshek, J., Basil, M., Guo, L., Ward, S. P., Farraye, F. A., & Reich, J. (2017). Media consumption and creation in attitudes toward and knowledge of inflammatory bowel disease: web-based survey. Journal of Medical Internet Research, 19(12), e403.

Hanghøj, S., & Boisen, K. A. (2014). Self-Reported Barriers to Medication Adherence

Among Chronically Ill Adolescents: A Systematic Review. Journal of Adolescent Health, 54(2),

121–138. https://doi.org/10.1016/j.jadohealth.2013.08.009

Hebl, M., Madera, J. M., & King, E. (2008). Exclusion, avoidance and social distancing.

Diversity Resistance in Organisations, 127–150.

175

Heijnders, M. L. (2004). The Dynamics of Stigma in Leprosy. International Journal of

Leprosy and Other Mycobacterial Diseases, 72(4), 437. https://doi.org/10.1489/1544-

581X(2004)72<437:TDOSIL>2.0.CO;2

Henderson, C., Brohan, E., Clement, S., Williams, P., Lassman, F., Schauman, O., …

Murphy, C. (2013). Decision aid on disclosure of mental health status to an employer: feasibility and outcomes of a randomised controlled trial. The British Journal of Psychiatry, 203(5), 350–

357.

Hernandez, B., Keys, C., & Balcazar, F. (2000). Employer attitudes toward workers with disabilities and their ADA employment rights: A literature review. JOURNAL OF

REHABILITATION-WASHINGTON-, 66(4), 4–16.

Hoppe, T. (2014). From sickness to badness: The criminalization of HIV in Michigan.

Social Science & Medicine, 101, 139–147.

Irvine, A. (2011). Something to declare? The disclosure of common mental health problems at work. Disability & Society, 26(2), 179–192. https://doi.org/10.1080/09687599.2011.544058

Jaarsma, T., Cameron, J., Riegel, B., & Stromberg, A. (2017). Factors related to self-care in heart failure patients according to the middle-range theory of self-care of chronic illness: a literature update. Current Heart Failure Reports, 14(2), 71–77.

Jacoby, A., Snape, D., & Baker, G. A. (2005). Epilepsy and social identity: the stigma of a chronic neurological disorder. The Lancet Neurology, 4(3), 171–178.

176

Jans, L. H., Kaye, H. S., & Jones, E. C. (2012). Getting hired: Successfully employed people with disabilities offer advice on disclosure, interviewing, and job search. Journal of

Occupational Rehabilitation, 22(2), 155–165.

Joachim Gloria, & Acorn Sonia. (2001). Stigma of visible and invisible chronic conditions. Journal of Advanced Nursing, 32(1), 243–248. https://doi.org/10.1046/j.1365-

2648.2000.01466.x

Jones, E. E. (1984). Social stigma: The psychology of marked relationships. WH

Freeman.

Kalichman, S. C., DiMarco, M., Austin, J., Luke, W., & DiFonzo, K. (2003). Stress,

Social Support, and HIV-Status Disclosure to Family and Friends Among HIV-Positive Men and

Women. Journal of Behavioral Medicine, 18.

Kaushansky, D., Cox, J., Dodson, C., McNeely, Mi., Sinthu, K., & Iverson, E. (2017).

Living a secret: Disclosure among adolescents and young adults with chronic illnesses. Chronic

Illness, 13(1), 49–61.

Klemm, P., Hurst, M., Dearholt, S. L., & Trone, S. R. (1999). Gender differences on

Internet cancer support groups. Computers in Nursing, 17(2), 65–72.

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.

Leaffer, E. B., Hesdorffer, D. C., & Begley, C. (2014). Psychosocial and sociodemographic associates of felt stigma in epilepsy. Epilepsy & Behavior, 37, 104–109. https://doi.org/10.1016/j.yebeh.2014.06.006

177

Link, B. G., & Phelan, J. C. (2001). Conceptualizing stigma. Annual Review of Sociology,

27(1), 363–385.

Lysaght, R., & Krupa, T. (2014). Employers’ perspectives on workplace accommodation of chronic health conditions. Working Bodies: Chronic Illness in the Canadian Workplace, 91–

113.

MacDonald-Wilson, K. L., Russinova, Z., Rogers, E. S., Lin, C. H., Ferguson, T., Dong,

S., & MacDonald, M. K. (2011). Disclosure of mental health disabilities in the workplace. In

Work accommodation and retention in mental health (pp. 191–217). Springer.

Mahajan, A. P., Sayles, J. N., Patel, V. A., Remien, R. H., Ortiz, D., Szekeres, G., &

Coates, T. J. (2008). Stigma in the HIV/AIDS epidemic: A review of the literature and recommendations for the way forward. AIDS (London, England), 22(Suppl 2), S67–S79. https://doi.org/10.1097/01.aids.0000327438.13291.62

Marinho, R. T., & Barreira, D. P. (2013). Hepatitis C, stigma and cure. World Journal of

Gastroenterology : WJG, 19(40), 6703–6709. https://doi.org/10.3748/wjg.v19.i40.6703

Marri, S. R., & Buchman, A. L. (2005). The Education and Employment Status of

Patients with Inflammatory Bowel Diseases. Inflammatory Bowel Diseases, 11(2), 171–177. https://doi.org/10.1097/00054725-200502000-00011

McGonagle, A. K., & Hamblin, L. E. (2014). Proactive Responding to Anticipated

Discrimination Based on Chronic Illness: Double-Edged Sword? Journal of Business and

Psychology, 29(3), 427–442. https://doi.org/10.1007/s10869-013-9324-7

178

Moore, G. A., Hawley, D. A., & Bradley, P. (2008). Hepatitis C: studying stigma.

Gastroenterology Nursing : The Official Journal of the Society of Gastroenterology Nurses and

Associates, 31(5), 346–352. https://doi.org/10.1097/01.SGA.0000338279.40412.96

Munir, F., Leka, S., & Griffiths, A. (2005). Dealing with self-management of chronic illness at work: predictors for self-disclosure. Social Science & Medicine, 60(6), 1397–1407. https://doi.org/10.1016/j.socscimed.2004.07.012

Munir, Fehmidah, Jones, D., Leka, S., & Griffiths, A. (2005). Work limitations and employer adjustments for employees with chronic illness. International Journal of Rehabilitation

Research, 28(2), 111–117.

Munir, Fehmidah, Leka, S., & Griffiths, A. (2005). Dealing with self-management of chronic illness at work: predictors for self-disclosure. Social Science & Medicine, 60(6), 1397–

1407.

Murray, C. J., Abraham, J., Ali, M. K., Alvarado, M., Atkinson, C., Baddour, L. M., …

Birbeck, G. (2013). The state of US health, 1990-2010: burden of diseases, injuries, and risk factors. Jama, 310(6), 591–606.

Noor, A., Bashir, S., & Earnshaw, V. A. (2016). Bullying, internalized hepatitis

(Hepatitis C virus) stigma, and self-esteem: Does spirituality curtail the relationship in the workplace. Journal of Health Psychology, 21(9), 1860–1869. https://doi.org/10.1177/1359105314567211

Oldfield, M., MacEachen, E., Kirsh, B., & MacNeill, M. (2016). Impromptu everyday disclosure dances: how women with fibromyalgia respond to disclosure risks at work. Disability

& Rehabilitation, 38(15), 1442–1453. https://doi.org/10.3109/09638288.2015.1103794

179

Parcesepe, A. M., & Cabassa, L. J. (2013). Public Stigma of Mental Illness in the United

States: A Systematic Literature Review. Administration and Policy in Mental Health and Mental

Health Services Research, 40(5), 384–399. https://doi.org/10.1007/s10488-012-0430-z

Parsons, T. (1975). The sick role and the role of the physician reconsidered. The Milbank

Memorial Fund Quarterly. Health and Society, 257–278.

Patterson, C. L., & Singer, J. A. (2007). Exploring the Role of Expectancies in the Mental and Physical Health Outcomes of Written Self-Disclosure. Imagination, Cognition and

Personality, 27(2), 99–115. https://doi.org/10.2190/IC.27.2.b

Phelan, S. M., Burgess, D. J., Yeazel, M. W., Hellerstedt, W. L., Griffin, J. M., & van

Ryn, M. (2015). Impact of weight bias and stigma on quality of care and outcomes for patients with obesity: Obesity stigma and patient care. Obesity Reviews, 16(4), 319–326. https://doi.org/10.1111/obr.12266

Puhl. (2009). The Stigma of Obesity: A Review and Update -. Obesity. Retrieved from https://onlinelibrary.wiley.com/doi/full/10.1038/oby.2008.636

Richardson, C. R. (2005). A lifestyle physical activity program for persons with serious mental illness. Psychiatric Services, 56(3), 354–354.

Rohde, J. A., Wang, Y., Cutino, C. M., Dickson, B. K., Bernal, M. C., Bronda, S., …

Farraye, F. A. (2018). Impact of Disease Disclosure on Stigma: An Experimental Investigation of College Students’ Reactions to Inflammatory Bowel Disease. Journal of Health

Communication, 23(1), 91–97. https://doi.org/10.1080/10810730.2017.1392653

180

Salminen, S., & Glad, T. (1992). The role of gender in helping behavior. The Journal of

Social Psychology, 132(1), 131–133.

Santinele Martino, A. (2017). Cripping sexualities: An analytic review of theoretical and empirical writing on the intersection of disabilities and sexualities. Sociology Compass, 11(5), e12471.

Saunders, B. (2017). ‘It seems like you’re going around in circles’: recurrent biographical disruption constructed through the past, present and anticipated future in the narratives of young adults with inflammatory bowel disease. Sociology of Health & Illness, 39(5), 726–740. https://doi.org/10.1111/1467-9566.12561

Scambler, G., Heijnders, M., van Brakel, W. H., & ICRAAS. (2006). Understanding and tackling health-related stigma. Psychology, Health & Medicine, 11(3), 269–270. https://doi.org/10.1080/13548500600594908

Schneider, J. W., & Conrad, P. (1980). In the Closet with Illness: Epilepsy, Stigma

Potential and Information Control. Social Problems, 28(1), 32–44. https://doi.org/10.2307/800379

Sermrittirong, S. (n.d.). Stigma in leprosy: concepts, causes and determinants.

Shaw, W. S., Kristman, V. L., Williams-Whitt, K., Soklaridis, S., Huang, Y.-H., Côté, P.,

& Loisel, P. (2014). The Job Accommodation Scale (JAS): Psychometric evaluation of a new measure of employer support for temporary job modifications. Journal of Occupational

Rehabilitation, 24(4), 755–765.

181

Shepherd, M. A., & Gerend, M. A. (2014). The blame game: Cervical cancer, knowledge of its link to human papillomavirus and stigma. Psychology & Health, 29(1), 94–109. https://doi.org/10.1080/08870446.2013.834057

Singletary, S. L., & Hebl, M. R. (2009). Compensatory strategies for reducing interpersonal discrimination: The effectiveness of acknowledgments, increased positivity, and individuating information. Journal of Applied Psychology, 94(3), 797.

Smit, P. J., Brady, M., Carter, M., Fernandes, R., Lamore, L., Meulbroek, M., …

Thompson, M. (2012). HIV-related stigma within communities of gay men: a literature review.

AIDS Care, 24(4), 405–412. https://doi.org/10.1080/09540121.2011.613910

Stangl, A. L., Lloyd, J. K., Brady, L. M., Holland, C. E., & Baral, S. (2013). A systematic review of interventions to reduce HIV-related stigma and discrimination from 2002 to 2013: how far have we come? Journal of the International AIDS Society, 16, 18734. https://doi.org/10.7448/IAS.16.3.18734

Stone, L. (2014). Blame, shame and hopelessness: medically unexplained symptoms and the’heartsink’experience. Australian Family Physician, 43(4), 191.

Stone, S. D. (1995). The myth of bodily perfection. Disability & Society, 10(4), 413–424.

Stone, S.-D., Crooks, V. A., & Owen, M. (2013). Going through the back door:

Chronically ill academics’ experiences as ‘unexpected workers.’ Social Theory & Health, 11(2),

151–174.

Sulik, G. A. (2010). Pink ribbon blues: How breast cancer culture undermines women’s health. Oxford University Press.

182

Taft, T. H., & Keefer, L. (2016). A systematic review of disease-related stigmatization in patients living with inflammatory bowel disease. Clinical and Experimental Gastroenterology, 9,

49–58. https://doi.org/10.2147/CEG.S83533

Thomas, S. V., & Nair, A. (2011). Confronting the stigma of epilepsy. Annals of Indian

Academy of Neurology, 14(3), 158–163. https://doi.org/10.4103/0972-2327.85873

Tompa, E., Scott, H., Trevithick, S., & Bhattacharyya, S. (2006). Precarious employment and people with disabilities. Precarious Employment: Understanding Labour Market Insecurity in Canada, 90–114.

Toth, K. E., & Dewa, C. S. (2014). Employee Decision-Making About Disclosure of a

Mental Disorder at Work. Journal of Occupational Rehabilitation, 24(4), 732–746. https://doi.org/10.1007/s10926-014-9504-y

United Ostomy Associations of America. (n.d.). What is an Ostomy? Retrieved April 28,

2019, from United Ostomy Associations of America website: https://www.ostomy.org/what-is- an-ostomy/

Vaingankar, J. A., Subramaniam, M., Abdin, E., He, V. Y., & Chong, S. A. (2017). How much can I take?: predictors of perceived burden for relatives of people with chronic illness.

Van Dongen, C. J. (1996). Quality of life and self-esteem in working and nonworking persons with mental illness. Community Mental Health Journal, 32(6), 535–548.

Vickers, M. H. (1997). Life at work with “invisible” chronic illness (ICI): The “unseen”, unspoken, unrecognized dilemma of disclosure. Journal of Workplace Learning, 9(7), 240–252.

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Vickers, M. H. (2012). “For the Crime of Being Different….” Employee Responsibilities and Rights Journal, 24(3), 177–195.

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CHAPTER 7. DISCUSSION AND CONCLUSION Invisible chronic illnesses and conditions significantly impair normal activities of daily living. In the United States, 96% of people with chronic medical conditions show no outward signs of their illness, and 10% experience symptoms that are considered disabling (Shapiro,

2012). Invisible illnesses can hinder a person's efforts to go to school, work, socialize, and more.

The challenges and impairment associated with invisible chronic illnesses can be difficult for others to recognize or acknowledge. Others may not understand the cause of the problem, since they cannot see visible evidence of it.

One such invisible illness, Crohn’s Disease, affects as many as 780,000 Americans

(Kappelman et al., 2007), but there is relatively little literature examining people’s subjective experiences of the disease (Casati et al., 2000). Outsiders see people living with Crohn’s Disease working, socializing, smiling and laughing, exercising and grocery shopping. People living with

Crohn’s however, experience very real symptoms, such as chronic pain, insomnia, extreme fatigue, and medication side effects, to name just a few. These physical symptoms exist alongside the psychosocial realities of Crohn’s which can include financial burdens from medical costs, loneliness, and isolation.

This dissertation investigates how people living with Crohn’s manage myriad aspects of their illness while pursuing social milestones, such as having a career, getting married and/or

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becoming a parent. My research question led to the investigation of three aspects of the Crohn’s experience: how biographical disruptions affect life chances, loss and normality; how individuals with Crohn's fight for legitimacy in the clinical setting; and, how stigma and labeling shape an individual’s choice to disclose illness in the workplace. In this discussion, I begin by describing the relevant findings of each line of investigation, highlighting contributions to the field and providing recommendations to further research. Last, in my conclusion, I discuss the research implications of my work.

Finding 1: Chronic illness as Disruptive

CD, is not likely, as participants may not be able to compartmentalize the impact of the disruptions. My findings in my first empirical paper contradict Williams’ (2000) conceptualization of normality in chronic illness-- that the repeat disruptions become commonplace and expected with a longer disease course. In contrast, I find that most participants in my study did not have an attitude of normalization toward their Crohn’s Disease, despite an average length of diagnosis of 13 years in the sample. My findings make it difficult to conclude that participants would become accustomed to some of the losses and challenges Crohn’s

Disease poses--even in less severe cases of the illness. Even those participants who had achieved remission before in the past, or were currently in remission, still experience disruptions to daily living and were not symptom-free, or worry free. These findings are consistent with Tusson,

Pilnick & Roy’s (2015) findings that show patients still had worries of disease reoccurrence

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during remission from breast cancer. In both my study and Tusson and colleagues’ study

(2015), participants still experience anxiety even in remission because of uncertainty and fear of the disease returning. While my population had a different chronic illness, participants experience a very similar significant psychosocial burden due to the multiple challenges of CD.

These challenges include its incurability, unpredictability, symptom severity, as well as surgery and medication side effects (e.g. Mikocka-Walus et al., 2016; Panara et al., 2014; Graff et al.,

2006; Nahon et al., 2012; Mittermaier et al., 2004).

The pervasive nature of these illness disruptions in my study signal to participants that they are not ‘normal’. Williams (2000) argued that with increased length of diagnosis comes normality and adjustment to the vicissitudes of a chronic illness. In other words, people with a chronic illness become accustomed to the repeat disruptions over time. My data show long-term patterns of disruption rather than biographical flow or normality. Much like Williams’ (2000) work on the nature of chronic illness disruptions, my findings also show that people living with a chronic illness face many types of uncertainty (diagnostic, symptomatic trajectory) resulting from disruptions. Participants in my study also describe all of these tangible feelings of uncertainty in their descriptions of anxiety and depression. I suggest that these feelings of uncertainty may partially explain participants’ self-described poor mental health—feelings of anxiety, sadness, depression, grief and feeling left behind their peers. Future research should attempt to detangle the impact of uncertainty and disruption on mental health. I expect that both the uncertainty and degree of disruption impact the prevalence of mental health symptoms in people living with Crohn’s.

Biographical Order and Life Course Perspectives on Illness

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Participants’ self-described anxiety leaves them waiting for another disruption. The next disruption is both anticipated and feared, much like Reeve and colleagues describe (2010). Also, similar to Liamputtong and Suwankhong (2015), the narratives in this study reveal shock, fear and anxiety in response to biographical disruptions. Narratives that describe grief and depression or sadness reflect uncertainty and a lack of biographical order, or are in a “biographical limbo”

1996b). I think that experiencing an episodic chronic illness like CD upset our reality of how one

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expects their life course to unfold. Participants used the word “derail” to describe the impact of

illness disruptions on their career, for example. Part of the mental health problems people report

may be due to illness disruptions that change the life course and cause out-of-sequence

transitions. These disruptions creates a disconnect between what we expect to happen in our life

course versus the reality of biographical disruptions interrupting structures of everyday life. This

disconnect between expectations and reality can also make lives asynchronous, or out-of-sync.

When lives are out-of-sync, relationships are often “strained in significant ways” (Settersten,

2003:27).

Biographical Disruptions and Loss

Much like the works of Thoits (1983) and Pearlin and colleagues (2005), my findings also show

how illness disruptions are temporary events that are undesired and involuntary having

deleterious effects on people’s well-being. My findings concur with Bury’s (1982) work

asserting that chronic illness is a disruptive force that upsets our assumptions of normality in

day-to-day life. Complimenting these previous findings, I assert that chronic illness also brings

about uncertainty in how to move forward to achieve social milestones following an illness flare

or new impairment. My results also show aspects of untimely illness, i.e. when diagnosis does

not meet age-related expectations. For example, the onset of Crohn’s disease in early adulthood

or adolescence can be viewed as an “untimely breach” (Kirkpatrick et al., 2018) to the expected

order of life course events. The distressing timing of illnesses, combined with repeat disruptions

over time make Crohn’s Disease particularly disruptive to people’s taken-for-granted

assumptions about daily living and their ability to execute normal social activities. Following my results, I conclude that painful disruptions undermine people’s taken-for-granted assumptions

about who gets sick, at what age, and at which point(s) in the life course.

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How my findings can be extended to other populations with chronic illnesses is an interesting topic for future research. In some disabilities (e.g. traumatic injury), there isn't a resulting progression of symptoms or uncertainty of future disablement. Wendell (2013) describes this state as the healthy disabled. In the case of CD, there is illness and impairment meaning they are the unhealthy disabled. Given that Crohn's-related symptoms are irregular and even appear in remission (Komperod et al., 2018), it is likely that this population experiences uncertainty to a higher degree. It would be interesting to see how people experience biographical disruptions during periods of clinical remission. For example, some participants in my study still experienced periodic disruptions or Crohn’s symptoms after their physician told them they were in remission. Some research even distinguishes between symptom remission and clinical remission (see Zallot et al., 2013.) I expect that people living with Crohn’s would still experience anxiety and uncertainty over when the next disruption was coming in both cases of remission.

My data shows some evidence that participants worry about the return of CD when they also experience partial or clinical remission with occasional symptoms. Further investigation is needed to examine people’s coping and sense of coherence when in clinical remission, yet still experience symptoms. I expect that many people in clinical remission still experience depression and anxiety. Experiencing depression during clinical remission might signal a longing for deep remission, where there are no symptoms. Also, experiencing anxiety might occur because they are anxious for the next round of symptoms to occur. Returning symptoms during clinical remission may signal that the disease is active again, and the person is no longer in remission. I suspect that the experiences of remission states in CD and IBD would mirror similar experiences of people living with breast cancer or prostate cancer, for example.

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Biographical disruptions and Life Chances

Participants in my study struggled to deal with painful disruptions (e.g, abdominal pain, bleeding, strictures, bowel obstructions, fatigue, insomnia, body aches, etc.) which impacted their social lives, work lives and family lives. These disruptions are clear and candid exemplars that having a chronic illness like Crohn’s affects one’s life chances. The life chances approach suggests that status is not entirely achieved, but to some extent, ascribed (Jones, 1975). As

Weber (1905) describes, ascriptive factors such as race/ethnicity, gender, and class of origin can all affect one's life chances. I argue, along with other scholars, that disability should be

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considered as an ascriptive quality that directly impacts life chances, such as educational attainment (Harvey et al., 2019), lifetime earnings or income (El-Matary et al., 2017), .

Future studies on biographical disruption

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scholars should explore what impact, if any, physical pain has on the mental health of those with

CD and other chronic illnesses. I suspect the agony of dealing with physical pain takes a mental toll. In fact, recent research focuses on the relationship between pain and mental health

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these progressive losses and gains would be beneficial to future studies. Further, economic hardships, such as insurance coverage, likely impacts biographical uncertainty. Also, illness disruptions differentially impact people living with a chronic illness that are already in socially disadvantaged households. As such, SES and insurance coverage are important factors to consider when examining the impact of illness disruptions on mental health and self-identity.

Finding 2: Fighting for legitimacy in healthcare

In Chapter 5, I continue my investigation into how patients with an invisible chronic illness maintain credibility and legitimacy in the clinic. I ask how do they provide legitimacy to claims of pain and suffering when diagnostic tests show no signs of active disease? My findings show that delegitimation is a process that takes away power or control from people living with chronic illness disabilities. Participants tell narratives of being dismissed, devalued and labeled as crazy, lazy or addicted. As such, the power of health professionals is increased and the norm of normality is accentuated (e.g., Finkelstein and Stuart, 1996). Gaining a medical diagnosis has previously been identified as a mechanism to gaining legitimacy for suffering, disability, missing social events and work obligations in different chronic illness populations (e.g., chronic fatigue syndrome (Ware, 1992), fibromyalgia (Barker, 2009; Zavestoski et al., 2004), and multiple chemical sensitivity (Phillips, 2010). Patient-provider relationships are important to study as these interactions negotiate the legitimacy of symptoms in clinical settings. When patients fail to achieve legitimacy for their suffering, they respond, in part, by questioning the validity of their symptoms and, in turn, questioning their sanity. Importantly, participants highlighted an eroding trust between patients and physicians, citing the perception that doctors “think you’re lying.”

This mentality places an additional burden on patients to prove legitimate signs of disease, including “checking the facts,” the validity of their symptoms, before visiting the doctor’s office.

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My findings also show that in spite of a confirmed diagnosis, participants face a continued struggle for legitimacy. Persons living with an invisible chronic illness, like Crohn’s

Disease, want to be believed that they are suffering and taken seriously when seeking medical treatment. In the cases of chronic fatigue, fibromyalgia and multiple chemical sensitivity, the veracity of the illness was challenged, whereas in my study, Crohn’s Disease is an established disease. Never the less, the symptoms and level of pain and suffering are questioned in both cases. This is an important distinction as Crohn’s has been legitimized and standardized by the medical community, yet patients still face delegitimation from physicians. In fact, Crohn’s

Disease was established in 1932 with discoveries by Drs. Crohn, Ginzburg and Oppenheimer.

(There are reports by physicians of chronic diarrhea dating back to Greek antiquity (Lim and

Wallace, 2004). Even Hippocrates (460–370 BC) discussed the many possible etiologies of diarrhea (2004)). In 1975, scholars in Gastroenterology develop an index standardizing and measuring Crohn’s disease severity. Biologic medications (e.g., Humera) were introduced 15 years ago, and the efficacy and safety of these drugs have been well evaluated since that time.

Despite substantial advances in research, IBD and Crohn’s also defies cure (Mulder et al, 2014).

At best, IBD can be defined as a disease of disruption — disrupted physiology, microbiology, immunology and genetics (see Mulder et al., 2014).

Seeing is believing

There may be a commonality between people with invisible illness. It is the experience of not being believed when explaining painful symptoms and functional limitations. My results, much like previous studies listed (Barker, 2010; Phillips, 2010; Ware, 1992; Zavestoski et al.,

2004), demonstrate that participants’ with CD were labelled as crazy, psychosomatic or having mental health problems when clinical tests were inconclusive as to the cause of suffering. My

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findings are unique and show that there is a continued struggle for legitimacy regarding invisible chronic illnesses even decades after a diagnosis. It is the biomedical paradigm that accounts for the delegitimation experiences encountered by Crohn’s Disease sufferers, similar to Wares

(1992) work on chronic fatigue patients. My findings support claims that in the dominant biomedical model, only illnesses that are “objectively measurable” can be legitimized as disease

(Aronowitz, 1998:12). Further, my findings are similar to Barker’s (2010) description of women living with fibromyalgia making sense of unseen symptoms and pains that come with the disease. In both cases, patients had to convince physicians of the legitimacy and veracity of their symptoms.

Gaining medical legitimacy is a necessity for people living with invisible chronic illnesses. Using medical terms also provides legitimacy to missing work, arriving late or having extended bathroom breaks during shifts. Gaining medical legitimacy has been documented as a primary concern for those living with a contested chronic illness, such as Gulf War Syndrome,

Chronic Fatigue and Fibromyalgia. The idea that legitimacy has to be earned through gatekeepers and physicians is not included in Parson’s (1951) original conceptualization of the sick role. One critique of the sick role model is that Parson’s (1951) does not consider the legitimacy of a condition. Or rather, it assumes unconditional legitimacy. My findings refute this assumption, due to evidence that with stigmatized illnesses, participants are not accepted by others as legitimately sick. In sum, my findings highlight the social dimensions of being a person with a chronic illness in an environment in which one’s symptoms are open to misinterpretation.

In the absence of physical blemish, people turn to highlighting character blemishes of being mentally ill. According to my data, physicians labeled some participants as crazy in order to explain symptoms they cannot see. Kelley Joyce’s (2005) work adds to this discussion by

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demonstrating the ways American medicine centers on high-tech imaging equipment to diagnose and treat illnesses (2010). Visual representations have become central to American healthcare, identity and social relations. Without diagnostic evidence of active Crohn’s disease on ultrasound, CT or MRI, many people faced difficult interactions with their physician, including doubts about the legitimacy of their pain. I purport that personal trust between physicians and patients is therefore also reliant on the amount of visible proof patients can provide. Without diagnostic evidence, physicians are limited in the treatment options they can offer, under the biomedical model. In response, I ask in what ways does delegitimation impact people’s sense of identity as an ill-person or as an unhealthy disabled person? My data show that individuals question their self-esteem or worth. I think that not being believed, or being dismissed would take a toll on one’s sense of being a competent person—a whole person. Similarly, Dickson and colleagues (2008) show that ongoing personal loss, resulting from chronic fatigue syndrome, was associated with feelings of failure, worthlessness and identity crisis. Future studies should examine similar delegitimation struggles in other established diagnoses with unseen symptoms to confirm this finding is extendable. I expect other people living with Chronic Fatigue Syndrome,

Multiple Sclerosis, Rheumatoid Arthritis, or fibromyalgia, also face a continued struggle to prove the legitimacy of their symptoms after years of diagnosis. As such, further research should include individuals with a variety of illnesses and investigate the similarities and differences when the illness or degree of impairment changes.

Power and medical knowledge

My findings also show how people in less powerful positions claim knowledge of themselves and use it to balance power inequity in interactions with physicians. Research shows that patients need both power and knowledge to engage in shared decision-making with their

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physicians, yet data show that patients cannot currently participate in shared decision-making because of structural barriers of the training of the clinician/healthcare team and hospital hierarchy (Williams, Elwyn & Edwards, 2014). Williams and colleague’s (2104) systematic review of facilitators and barriers in patient-physician interactions and shared decision-making show that for patients, their medical knowledge is insufficient and power is hard to gain. The authors conclude that medical knowledge alone is not power, and power is needed for patieints to make informed decisions with their doctors. Furthering this research would be to interview the participants’ physicians to get their perspective on treating chronic illnesses, like Crohn’s. By including physician narratives, I expect to find common phrases that defend their medical opinion or legitimacy. I assume that learning the language of physicians is part of the socialization process that sets them apart from lay people. I expect that these narratives are learned through both medical education and practice. Comparing and contrasting physician and patient narratives may pin-point communication breakdowns that lead to people with disabilities feeling demeaned or unbelieved.

Finding 3: Stigmatization and Disclosure of Chronic Illnesses and Disabilities

In the third empirical paper, my results show that participants are likely motivated to disclose at work by implementing values of education for social change, valuing honesty and valuing empowerment. I argue that these values are a means of attaching meaning to their illness experiences by connecting their individual experience to larger social norms about illness and disability at work. With so many American workers living with a chronic illness, it is necessary to study their experiences to better understand facilitators and barriers to maintaining employment. However, the disclosure of an invisible chronic illness at work can make disclosure a risky event. Further, my results confirm that disclosure is a self-management strategy used at

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work. An increase in the severity of CD symptoms, experiencing symptoms at work that others can see, and needing ADA accommodations or leave from work are driving factors behind workplace disclosure. Finally, I find that disclosure is one way to normalize IBD and combat the stigma associated with gastrointestinal disorders. I conclude that disclosure is one way people living with CD can protect themselves from the stigma of being ‘unclean’ or ‘dirty.’

I argue that stigma is not the greatest, or only driving factor behind disclosure, as other research suggests. I posit that the reason that an individual with Crohn’s may want to disclose is to protect themselves from stigma, harassment and job termination. Disclosure also opens people up for increased stigmatization; and formal policies cannot prevent interpersonal stigmatization.

There are established policies aligning protections for those with disabilities, such as Crohn’s.

Yet, in order to gain formal protections, individuals need to disclose their disability to managers.

The invisibility of CD poses a barrier to legitimizing the illness and its effects to mangers because intrusive CD symptoms like fatigue, low immune systems, chronic abdominal pain, are not visible. Managers may engaged in enacted stigma as it takes the form of indirect discrimination. Indirect discrimination takes place through structural work policies, rules and systems that unfairly judge and discriminate against those with a stigmatized identity, such as

Crohn’s Disease. My data show people losing their employment and denial of opportunities because of having an invisible disability. For instance, Frank, 50, experienced flares of CD while working as a construction worker. He was illegally terminated because he had to take longer bathroom breaks frequently and his boss deemed him unfit to complete his work tasks. Indeed

Martino (2017) found that the consequences of enacted stigma in the workplace also include: abuse and violence, compulsory testing or quarantine, and denial of health services.

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My findings both complement and contradict current conceptualizations of stigma as the driving force behind choosing to disclose (e.g., Corrigan, 2003). Current research posits that people living with an invisible chronic illness work to keep their illness hidden and avoid being labelled as an unexpected worker, lazy or malingering (e.g., Barned, Stinzi, Mack, & O’Doherty,

2016; Beatty, 2012; Gignac & Cao, 2009; Munir, Leka & Griffiths, 2005; Scambler & Hopkins,

2006). Others have concluded that disclosure of an invisible illness occurs only when forced to do so (Kaushansky et al., 2017; Vickers, 1997). Yet, some scholars argue that people with invisible and stigmatized illnesses selectively disclose their illness, as in the case of epilepsy (see

Schneider & Conrad, 1980). Schneider and Conrad (1980) state that both instrumental telling and concealment of an invisible chronic illness are means to the same end. They are both management strategies to mitigate the potentially negative impact of epilepsy on people’s self- identity and daily living.

Similar to Schneider and Conrad’s (1980) research, I find that disclosure is instrumental telling of Crohn’s in order to protect themselves from the misinformed public perceptions and stigma associated specifically with Crohn’s. While previous papers on disclosure describe the telling process as cathartic and therapeutic, I find that disclosure of Crohn’s is more preventative and instrumental (i.e., it serves the function of information management and stigma management). Participants relayed information about their health status as a means to protect themselves from discriminatory firing and, also, to gain access to FMLA, disability accommodations, and ADA protections. In these ways, disclosure has an articulated function. I also find that people living with an invisible chronic illness implement disclosure as an emotional support tool. Participants are motivated to and/or choose to disclose to implement values. Affirming one’s values of ‘empowerment’, ‘honesty’ and ‘educating others’ through

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disclosure may also be affirming one’s self-identity that emphasizes and focuses on the whole person, not just the diseased body part(s)

I posit that the increasing amount of misinformation about CD is another motivating factor to disclose. Thomas and colleagues (2018) show that Crohn’s, along with fibromyalgia and multiple sclerosis, are poorly understood by the public in part due to the television advertising and opinion editorials on the internet. Further, among Americans, Irritable Bowel

Diseases (IBD), such as Crohn’s and Ulcerative Colitis, are the most stigmatized of seven common diseases, including HIV/AIDS (Groshek et. al., 2017). This stigma is felt by people living with an invisible chronic illness. When felt stigma is internalized, it manifests in individualized feelings of guilt, shame, depression and withdrawal of social activities. As such, future studies should include measures of public attitudes towards CD and their impact on felt stigma, enacted stigma, identity and disclosure. The stigma ingrained in these structural policies serves to socially exclude people living with a chronic illness or disability. Social disqualification is important when considering the wellbeing of people living with CD because disqualification impacts one’s identity negatively and is reproduced in all social interaction through frequented places, consumption patterns, language and forms of self-preservation

(Fialho, 2016). The social disqualification also contributes to cumulative disadvantages across the life course. In fact, Hatzenbuehler, Link and Phelan (2013) details how stigma is a fundamental cause of groups’ health inequalities. I add to their work and state that the visibility of a condition plays a vital role in the degree to which onlookers accept or reject chronic illness and disability in society. My future research on the lived experience of CD will dig deeper into my data on how participants’ feelings of internalized stigma and mental health. I suspect some of the self-identity issues people with a chronic illness face is due to internalized, or felt, stigma. I

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expect to find co-occurring aspects of labeling, stereotyping, status loss and discrimination, as

Link and Phelan (2001) conceptualized the complex nature of stigma.

Credible worker identity

In Chapter 6, maintaining credibility at work was another concern for participants. I ask, what role does the stigma of Crohn’s Disease play in choosing whether or not to disclose their disability at work? Strategies previously thought to maintain the credibility at work, like non- disclosure, may have adverse effects on working lives. Contrary to research claiming stigma prevents disclosure (Greene, 2000; Joachim & Acorn, 2000; Ostrom et al., 2006), there is ample literature suggesting people control the way they disclose and to whom (e.g., Schneider &

Conrad, 1980; Barned et. al., 2016; Benson et. al., 2015). Participants used medical terms and biological bases for the symptoms of Crohn’s to escape moral stigmatization. This finding has implications for the sick role and unrealistic expectations of healing. Part of the moral stigmatization of Crohn’s comes from people’s expectation that ill people seek treatment and try to get better, according to Parson’s sick role (described earlier). However, there is a misconception in the public the Crohn and colitis can be treated and cured through diet, which is false. So, when people fail to get better from Crohn’s, others assume that the person is not trying hard enough, or not eating the right things to get better. My findings are important and show that the expectations of wellness vary from patient to patient. This is dependent on how visible or severe is the case of CD.

My findings also show another social burden of having a chronic illness is maintaining credibility as a good worker while managing a disruptive illness. Maintaining the role of a ‘good worker’ includes remaining healthy and dependable. My findings show that having a chronic illness likely disrupts this ideal image and signals that people with a chronic illness may be an

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‘unexpected worker’ that may be unreliable. My findings remain consistent with current discussions of unexpected workers (Stone, Crooks, & Owen, 2013). I agree with previous literature that disclosure both marks someone as an unexpected worker, thus risking discrimination. It conversely offers a means to ensuring protections from termination, largely through the ADA or workplace policies stemming from the act. However, my findings show that disclosure does not guarantee protections or accommodations. Some participants were terminated due to their disability needs. Importantly, my research suggests that it is imperative to consider how chronically ill people in the labor force are viewed and treated. The labelling and stigmatization process leads to people with chronic illness disabilities being excluded from all spheres of social life, and allows people to treat them either as crazy or malingering. The related concepts of stigma, prejudice, negative stereotype, and discrimination together contribute to oppressive, disabling environments, affecting individuals' identities and psychosocial resources

(see Fine and Asch 1988; Link and Phelan 2001).

Managerial attitudes

My findings, much like Foitzek and colleagues (2018), shed light on the importance of changing the attitudes of supervisors and co-workers to counteract stigmatization of persons with chronic health conditions in the workplace. Similar to Foitzek and colleagues (2018), I show employed people with a chronic illness require more flexible contracts e.g. changing from full- time to part-time, or the ability to start work an hour later. Importantly, my results show that workers with Crohn’s want to see changes in the workplace and their work tasks with regards to their health condition. Both my findings and Foitzek et al. (2018) show the importance of adapting the workplace and environment according to the needs of persons facing chronic health conditions. My research has implications to enable people with Crohn’s to maintain a job or

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return to work in the long run. Following my results, we now know that there is still misinformation about the ability of workers to perform tasks while also having a chronic illness.

I suggest that having a workplace that is open to the continued education of coworkers and managers on specific illnesses and promoting the inclusion of disability diversity in the workplace are needed to promote a positive work environment. I add to the current literature by showing that a positive work environment likely makes disclosure less risky. I posit that more positive environments and flexible contracts will benefit relations between workers and employers. Much of the anger and frustration participants express toward their managers is from a lack of understanding the severity of Crohn’s. It should be no surprise that stigmatizing attitudes, ignorance of discrimination and psychosocial workplace risks are leading causes on excluding workers from the labor market (OECD, 2015). A change in the attitudes of supervisors and co-workers could lead to increased understanding and resulting support for colleagues facing chronic health conditions in work-related aspects. This support can lead to an improvement of productivity as well as reduction of costs such as the cost of sickness, work absence and staff turnover.

Social Disqualification of Chronic Illnesses and Disabilities

Whether or not the illness is visible, determines how much a person may experience social disqualification. The stigma ingrained in these structural policies serves to socially exclude people living with a chronic illness or disability. Social disqualification is important when considering the wellbeing of people living with CD because disqualification impacts one’s identity negatively and is reproduced in all social interaction through frequented places, consumption patterns, language and forms of self-preservation (Fialho, 2016). The social disqualification also contributes to cumulative disadvantages across the life course. In fact,

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Hatzenbuehler, Link and Phelan (2013) details how stigma is a fundamental cause of groups’ health inequalities. My data show how people feel not only stigmatized, but also likely experience social disqualification due to the stigma of CD. The complex of rules that govern each of these dimensions of social exclusion are enforced through laws, government policies, and the rules of private entities; informal practices and relationships; and bureaucracies. These dimensions are mutually reinforcing. Also, it is important to note that social disqualification is not about rules only, but is also about actions and behaviors that follow discriminatory rules and regulations. The history of social exclusion lays the groundwork for future social exclusion of people with disabilities and chronic illnesses. Even when people dismantle the policies, the pattern of social exclusion continues because of the foundation that was deliberately set (Razzza,

2017). Specifically, people with disabilities, like CD, face three different types of systematic, social exclusion, including: social deprivation, economic disadvantage and democratic disqualification (Razza, 2017). First, people living with a chronic illness or disability face a systematic denial of social capital through loose networks and norms of trustworthiness and reciprocity (Putman, 2000). This group of people also face economic disadvantage, which has been documented in the literature (e.g., (Atkinson, Rees, & Davis, 2015; Barnes & Mercer, 2010;

CDC, 2018; Krahn, Walker, & Correa-De-Araujo, 2015). As a minority group, people living with a disability have disproportionate access to power, economic resources and knowledge

(Barnes & Mercer, 2010). Second, this group of people face economic advantages, specifically they experience constraints on how people with disabilities participate as workers, where they can work, as consumers and as owners. Some of these constraints are seen in my data on disclosure at work (see Chapter 6). There are work policies in place that constrain people with

CD by limiting bathroom breaks and limited sick days permitted each year, for example. Third,

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people with disabilities and chronic illness experience democratic disqualification by having limited access to have an equal say in policy decision-making of the nation or their community.

In sum, the social disqualification of people living with CD and other chronically ill disabled people. There are unspoken rules and norms of where people with a disability like CD belong in society. Social deprivation, according to Razza (2017), draws the lines of who belongs in society—in the nation and in very particular places—and how they belong there. It deliberately deploys abelist ideas to justify and normalize social exclusion in order to “distract the public from who is responsible for inequality” (2017:2). In summary, social deprivation justifies and advances policies that exacerbate economic disadvantages and democratic disqualification.

Disability and Norms of Perfection

People with disabilities are also constantly measured against the norm of perfection. The impossible demands made on people with chronic illnesses by the norm of perfection are at the root of people’s oppression (see Powell, 2003). Leonard Davis (2015), a disability studies professor at the University of Illinois at Chicago, states that most so-called "normal" people do not feel comfortable talking with a person living with a disability. My results show that the stigma associated with Crohn’s is real and that misinformation about the condition is one way the stigma continues. I agree with Davis (2015) that the relations between people with disabilities and nondisabled is a problematic and fraught one. Indeed, for most people, it is a relationship based on ignorance and liberal notions of sympathy and pity. In other words, to put the matter bluntly, it is the relation between an oppressor and the oppressed. So that's where we are in regard to disability – “somewhere between the 19th century and the 1950's” (Davis, 2015)

If the experience of disability is solely presented in the context of medical knowledge, it will continue to be seen as largely a matter of a particular set of physical or intellectual

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dysfunctions and little else. Notions of disability policy and disability issues have counterproductively been kept separate from social movements to end poverty, inequalities, opioid addiction and (absurdly) universal health care. One structural change that could improve the working lives of peoples with a chronic illness would be decoupling employment and insurance coverage (McCormick, 2012; Singleton, 2014). Doing so would allow medical treatments to continue, even if a patient is laid off from work or disabled and unable to work.

What I see in the current disabilities movement is a need to expand the American’s with

Disabilities Act to be more than a ‘disability issue’. It is a civil rights issue. The Disability

Justice Initiative declares that we can't address core progressive issues—poverty, health care, and more—without recognizing the specific vulnerabilities that people with disabilities face, and the contributions that disabled people can make. More needs to be done for Americans working and living with an illness disability. I agree with Rebecca Cokley, the new director of the Disability

Justice Initiative, that policy makers need to go beyond monolithic special education and

Medicaid and expand to consider issues of poverty, addiction, recovery, eating disorders, autism and people who have never seen themselves as people with disabilities but either accessed accommodations or had the right to access accommodations.

Strengths of the study

This study has a few strengths worth noting. First, this is a relatively large sample size for a qualitative study. The sample size (n=35) is large enough to support research claims through reaching theoretical saturation, but is not too large to prohibit the deep, case-oriented analysis that is the advantage of qualitative inquiry. The sample is diverse in terms of employment status, education level, disability status, as well as disease severity and length. This variation helps paint a picture of a working age population of Americans living with Crohn’s Disease. By applying a

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LCP to inform study design, I was able to focus on long-term patterns of health and illness spanning more than one life stage (see Stettersten, 2003). The LCP also shows the interplay of the macro- and micro-, of history and biography. Participants’ narratives link together their health trajectories (biography) with advances in pharmacology and Crohn’s treatments (history).

They also describe how structures of medicine and large-scale insurance policies impact their individual care and access to healthcare. Qualitative research is important for healthcare reform and is used to inform changes in US primary healthcare and nursing practices(e.g., Egbunike et al., 2010; Kandaker et al., 2013; Williams et al., 2014; and Wackerbarth et al., 2007).

Second, my data show considerable richness and specificity by focusing on chronic illness experiences at various transitions of the life course. Even though this research focused on one disease, the narratives give specific accounts of stigma and delegitimation. It captures a wide range of individual experiences. By studying one disease, I find comparisons between participants more straightforward. It would be interesting to include narratives from other people living with fibromyalgia, MS, RA or chronic fatigue to see similarities among them. I expect to find similar struggles for continued legitimacy over symptoms even after diagnosis. Third, my data provide more detailed information to explain complex issues of legitimacy, social disability, and disruptions shaping life chances. Based on the literature, I also would expect to see mental health, pain and biographical disruptions emerging as prominent themes associated with impairment and disability.

Research Implications and Future Directions

The present study centers on how Crohn’s Disease extends into people’s public and personal lives. By understanding how people handle the demands of their illness, it is then possible to target interventions that can help them cope more effectively, resist stigmatization,

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promote disclosure, reduce stress, and produce better health overall. My dissertation has research implications for sociology. Further research should investigate the outcomes of not receiving legitimacy following a diagnosis. I expect, based on my findings, that people living with other serious chronic illnesses, e.g. fibromyalgia, face delegitimation of symptoms after they have received a legitimate diagnosis. Indeed, the literature shows this continued struggle. As Sim and

Madden (2008) explain, conflict emerges between the patient’s appearance and their ability to do daily tasks (Hallberg and Carlsson, 1998, Henriksson, 1995); causing the illness, and henceforth the individual's credibility, to be questioned by others (Barker, 2005, Cunningham and Jillings,

2006, Mengshoel and Heggen, 2004, Söderberg and Lundman, 2001, Söderberg et.al.,

1999;Thorne, McGuinness, Con, Cunningham, & Harris, 2004). Similarly, regarding CD, my findings show that for some people living with a chronic illness, that there is a continued struggle for legitimacy after getting a diagnosis. The continued struggle over what symptoms and illnesses are real stem from society’s dependence on evidence from x-rays or MRIs. In this way, part of the disability associated with Crohn’s Disease is that the disability lies in the social construction of what is and is not a legitimate illness.

People living with Crohn’s need medical legitimacy to receive work accommodations,

FMLA and short-term disability. Without legitimacy, participants began to question their mental health and whether others’ claims of ‘crazy’ or ‘addict’ were true. Knowing that people face additional mental health challenges along with barriers to medical legitimacy, researchers should now work toward investigating interventions that can minimize some of the anxiety, depression and grief associated with biographical disruptions or anxiety associated with delegitimation.

My research and previous studies show people living with irritable bowel disorders (IBD) face the continued barrier of stigma. My findings show the need for more public information

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about IBD to promote understanding and reduce stigma about Crohn’s. Future research should focus on the effectiveness of public awareness campaigns in reducing stigma of chronic illnesses at work. It would be especially interesting to follow up and interview the managers and coworkers of the participants to see where the most stigmatizing attitudes come from higher up the leadership ranks. In other words, which has a bigger impact—negative stereotypes from coworkers or from higher-up managers? I suspect further investigation will show aspects of policing among coworkers of what is and is not appropriate illness to show at work. There seems to be an assumption that the population of chronic illness is irrelevant to management and organizational research because people with disabling levels of chronic illness will not enter the workforce or will leave soon after diagnosis (see Beatty & Joffe, 2006). Yet people experiencing disabling symptoms continue to work far beyond the time frame that others might expect.

According to Beatty & Joffe (2006), too often organizations are unaware of the impact of chronic illness on an employee’s work life. “Employees generally leave an organization without asking for the additional flexibility that could have helped them stay at their jobs” (2016:183). My results add to this and show that people may want to disclose their illness in order to get accommodations but disclosure may be too risky if the work environment is not supportive.

Researching the impact of chronic illness on an employee’s work life will help identify ways to retain workers and allow people with a chronic illness to contribute towards the policies that govern the organization. My results detail the stigma of being an unclean person that is associated with having Crohn’s Disease. My data also show that despite the public stigma and misinformation of IBD, people disclosed their health status through instrumental disclosure and used disclosure as an emotional support tool and acted on their values. Future research should investigate the impact of levels of stigma resulting from different diseases on the prevalence of

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inclusive workplace policies and attitudes. I suspect that physical illnesses with a higher comorbidity of mental illness will be more stigmatized. Also, public perceptions of how the disease is caused (e.g., bad diet or genetics) likely influences levels of stigma.

People with invisible chronic illnesses like Crohn’s are seen as 'abnormal' because they are different; they feel they are problem people, lacking the opportunities for social integration.

But the truth is, like everybody else, they have a range of things they can and cannot do, a range of abilities both mental and physical that are unique to them as individuals. The only difference between them and other people is that people with chronic illnesses are viewed through a lens which only focus on their inabilities, and suffer a blindness--a sort of medicalized response. For example, participants in my study describe their illness in easy to understand medical terms.

They often view their illness as a physical, medical problem. Meanwhile, their narratives connect their bodily experiences, sense of self and larger reflections of disability in society. Their narratives show a cultural expectation of ‘seeing is believing’ (Joyce, 2010). As such when participants tell their narratives they may also engage in ‘biographical reflection’ or

‘reconstruction’ like Bury (2001) found. By talking, they attempt to normalize serious, threatening symptoms. As sociologists we should care how individuals form these narratives and tell their stories.

Limitations

Careful consideration was given to the limitations of this study and ways of minimizing potential threats to the credibility of the research findings. Like all social science research, this study has a few limitations that are worth noting. First, there are concerns related to common critiques of the qualitative methodology, namely researcher bias and subjectivity. Second are

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issues raised related to the study’s sampling methods. While there are strengths to my study, there are a few limitations worth discussing.

First, my study findings are limited by researcher subjectivity and personal choices, an overarching concern of researcher subjectivity and bias. My background as a person living with

CD gave me the privilege of an insider’s perspective on the world of chronic illness and the burdens associated with it. However, this also meant that I approached this study with a preconceived set of assumptions about medical authorities and patient agency and responsibility before conducting the interviews. To counter the influence of my bias, I acknowledged and reflected upon my own personal history as a patient, and used memos and reflective journals to dialogue with myself regarding how my biases might or might not color my interpretations of others’ illness experiences. As I continued my work, reflective insight became a key part of understanding and interpreting the data I collected. Additionally, I took the following measures regarding the issues of bias and subjectivity. Coding themes were evaluated by peer review and supervision by my academic advisors. Coded interviews and transcripts were de-identified to reduce any potential bias during data analysis, so as to avoid my associating any material with any specific participant. As data collection and open coding were conducted simultaneously, the interview guide changed and reflected the concerns of the participants. I wrote memos and reflections on any potential bias I might introduce when changing the open-ended interview questions.

Second, my study is not generalizable. Rather, my study was meant to examine a specific population. I propose that my findings are, however, transferable or applicable to other groups of people living with a chronic illness in the United States. Future studies should focus on more than one chronic illness to see what outcomes are shared by people experiencing Crohn’s,

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Chronic Fatigue, Multiple Sclerosis, Rheumatoid Arthritis and Fibromyalgia. It is likely that people living with fibromyalgia or Chronic Fatigue face continued delegitimation issues after 20 years of living with the illness. I expect that people will face a continued struggle for legitimacy as doubts over credible suffering stem from a ‘seeing is believing’ culture in medicine.

Third, the sample notably lacks racial and ethnic diversity. IBD is more prevalent in

Caucasians, especially those from northern Eastern Europe. There is also a higher risk of people of Jewish decent having IBD (Loftus, 2007). However, the rate of diagnosis in African American patients is on the rise, approaching the rate in whites (see Betteridge et al., 2013). Research shows some biological differences in pathology (see Basu et al., 2005), which may lead to different treatment approaches. Research shows that regardless of disease specification, both blacks and whites felt equally informed about CD, but white patients felt that their disease was under ‘good’ control a greater percentage of the time, 71% versus 58% (p= 0.04) (Jackson et al.,

2008). Still, studies show that racial differences exist regarding disclosure. Whites are more likely to disclose their IBD status at work to managers and coworkers (Finlay, Basu, & Sellin,

2006). Addressing the impact of race on disclosure at work is one way to examine the power and status dynamics impacting disclosure. Race not only impacts our interactions at work, but also shapes how we interact with our physician.

Fourth, another limitation to consider is the restricted research sample, most notably its gender composition. Despite my best efforts to recruit participants from a variety of backgrounds, my sample was largely limited to white, well-educated women. This is not surprising considering the current literature on women’s increased likelihood of volunteering to participate in survey research (Curtin et al., 2000; Moore & Tarnai, 2002; Singer et al., 2000). In general, more educated and socioeconomically advantaged people are more likely to participate

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in surveys than are less educated and less affluent people (Curtin, Presser, & Singer, 2000;

Goyder, Warriner, & Miller, 2002; Singer, van Hoewyk, & Maher, 2000), and whites are more likely to participate than non-white people (Curtin et al., 2000; Groves, Singer, & Corning, 2000;

Voight, Koepsell, & Darling, 2003). It is also important to take into consideration the taboo nature of CD symptoms (e.g., abdominal pain, fatigue, and uncontrolled bowel movements).

Men might have felt uncomfortable discussing such issues with a female researcher and this potentially deterred them from participating in the study.

Last, there is also a possible selection bias at play in this study. Specifically my sample is comprised largely of women and has few men or people of color. The gendered nature of the sample is not surprising considering women are more likely to engage in helping behaviors

(Salminen, 1992). The purposes behind participating in research vary as well. Both men and women use online support groups, albeit for different reasons. For example, men were more than twice as likely to give information and women more than twice as likely to give encouragement and support (Klemm et al., 1999). Information giving/seeking was ranked first in the prostate group, and personal experience took priority in the breast group (Klemm et al., 1999). Because the sample contained a majority of women, the few men’s stories included did not offer enough information to adequately draw any significant gender analyses. While my study included both men and women, including more men in my sample would allow me to make meaningful comparisons between genders, specifically how a chronic illness interacts with a gendered life course. We already know that men and women experience different work trajectories due to work and family demands (Moen, 2001; Williams and Umberson, 2004). Also, as mentioned earlier, people’s age-related expectations and mental maps differ across cohorts, race/ethnicities, gender and culture. Women may also be more likely to be labeled as hysterical, crazy, or

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particularly ‘difficult’ patients (Ussher, 2013). Yet, the men in my sample also describe derogatory interactions with their doctors, including being labeled as crazy or addicts.

Conclusion

Last, I am not ready to abandon the quest for a better society, in which human beings are appreciated for abilities and talents, assisted based upon their needs, and where differences in health status are not occasions for exclusionary or pejorative treatment. I am interested in achieving a society where health status is no more consequential for life chances than is eye color. I charge other scholars, as well as myself, to commit to better understanding illness, disability and social justice. We must work to address the structural inequalities wrapped up in social constructions of disability.

REFERENCES Abbey, S. E., De Luca, E., Mauthner, O. E., McKeever, P., Shildrick, M., Poole, J. M., … Ross,

H. J. (2011). Qualitative interviews vs standardized self-report questionnaires in assessing

quality of life in heart transplant recipients. The Journal of Heart and Lung

Transplantation, 30(8), 963–966.

Abdullah, T., & Brown, T. L. (2011). Mental illness stigma and ethnocultural beliefs, values, and

norms: An integrative review. Clinical Psychology Review, 31(6), 934–948.

https://doi.org/10.1016/j.cpr.2011.05.003

ADA National Network. (n.d.). Learn About the National Network | ADA National Network.

Retrieved April 28, 2019, from https://adata.org/national-network

Alderson, S. L., Foy, R., Glidewell, L., & House, A. O. (2014a). Patients understanding of

depression associated with chronic physical illness: a qualitative study. BMC Family

Practice, 15(1), 37.

215

Alderson, S. L., Foy, R., Glidewell, L., & House, A. O. (2014b). Patients understanding of

depression associated with chronic physical illness: a qualitative study. BMC Family

Practice, 15(1), 37.

Alexias, G., Savvakis, M., & Stratopoulou, I. (2016). Embodiment and biographical disruption in

people living with HIV/AIDS (PLWHA). AIDS Care, 28(5), 585–590.

Anderson, B. J., Brackett, J., Snoek, F. J., & Skinner, T. C. (2005a). Diabetes in children.

Psychology in Diabetes Care, 2, 1–25.

Anderson, B. J., Brackett, J., Snoek, F. J., & Skinner, T. C. (2005b). Diabetes in children.

Psychology in Diabetes Care, 2, 1–25.

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.

Banks, J., & Prior, L. (2001). Doing things with illness. The micro politics of the CFS clinic.

Social Science & Medicine, 52(1), 11–23.

Barker, K. (2009). The fibromyalgia story: Medical authority and women’s worlds of pain.

Temple University Press.

Barned, C., Stinzi, A., Mack, D., & O’Doherty, K. C. (2016). To tell or not to tell: A qualitative

interview study on disclosure decisions among children with inflammatory bowel disease.

Social Science & Medicine, 162, 115–123. https://doi.org/10.1016/j.socscimed.2016.06.023

Barrett, J. C., Hansoul, S., Nicolae, D. L., Cho, J. H., Duerr, R. H., Rioux, J. D., … Daly, M. J.

(2008). Genome-wide association defines more than thirty distinct susceptibility loci for

Crohn’s disease. Nature Genetics, 40(8), 955–962. https://doi.org/10.1038/NG.175

216

Bautista, R. E. D., Shapovalov, D., & Shoraka, A. R. (2015). Factors associated with increased

felt stigma among individuals with epilepsy. Seizure, 30, 106–112.

https://doi.org/10.1016/j.seizure.2015.06.006

Beatty, J. E. (2012). Career barriers experienced by people with chronic illness: A US study.

Employee Responsibilities and Rights Journal, 24(2), 91–110.

Beatty, J. E., & Kirby, S. L. (2006). Beyond the Legal Environment: How Stigma Influences

Invisible Identity Groups in the Workplace. Employee Responsibilities and Rights Journal,

18(1), 29–44. https://doi.org/10.1007/s10672-005-9003-6

Bell, S. L., Tyrrell, J., & Phoenix, C. (2016). Ménière’s disease and biographical disruption:

Where family transitions collide. Social Science & Medicine, 166, 177–185.

Bengtson, V. L., Elder Jr, G. H., & Putney, N. M. (2012). The life course perspective on ageing:

Linked lives, timing, and history. Adult Lives: A Life Course Perspective, 9–17.

Bennebroek Evertsz’, F., Thijssens, N. A. M., Stokkers, P. C. F., Grootenhuis, M. A., Bockting,

C. L. H., Nieuwkerk, P. T., & Sprangers, M. A. G. (2012). Do Inflammatory Bowel Disease

patients with anxiety and depressive symptoms receive the care they need? Journal of

Crohn’s and Colitis, 6(1), 68–76.

Benson, V., Saridakis, G., & Tennakoon, H. (2015). Information disclosure of social media

users: does control over personal information, user awareness and security notices matter?

Information Technology & People, 28(3), 426–441.

Bernstein, C. N., Hitchon, C. A., Walld, R., Bolton, J. M., Sareen, J., Walker, J. R., … Marrie, R.

A. (2019). Increased Burden of Psychiatric Disorders in Inflammatory Bowel Disease.

Inflammatory Bowel Diseases, 25(2), 360–368. https://doi.org/10.1093/ibd/izy235

Bernstein, D. (2018). Essentials of psychology. Cengage Learning.

217

Bhatia, V., & Tandon, R. K. (2005). Stress and the gastrointestinal tract. Journal of

Gastroenterology and Hepatology, 20(3), 332–339.

Bogdan, R., & Biklen, S. K. (1997). Qualitative research for education. Allyn & Bacon Boston,

MA.

Bransen, E. (1992). Has menstruation been medicalized? Or will it never happen…. Sociology of

Health & Illness, 14(1), 98–110.

Brant, S. R., Okou, D. T., Simpson, C. L., Cutler, D. J., Haritunians, T., Bradfield, J. P., …

Kumar, A. (2017). Genome-wide association study identifies African-specific susceptibility

loci in African Americans with inflammatory bowel disease. Gastroenterology, 152(1),

206–217.

Brinkmann, S., & Kvale, S. (2008). Ethics in qualitative psychological research. The Sage

Handbook of Qualitative Research in Psychology, 24(2), 263–279.

Brohan, E., Henderson, C., Wheat, K., Malcolm, E., Clement, S., Barley, E. A., … Thornicroft,

G. (2012). Systematic review of beliefs, behaviours and influencing factors associated with

disclosure of a mental health problem in the workplace. BMC Psychiatry, 12(1), 11.

Brohan, E., Slade, M., Clement, S., & Thornicroft, G. (2010). Experiences of mental illness

stigma, prejudice and discrimination: a review of measures. BMC Health Services Research,

10(1), 80. https://doi.org/10.1186/1472-6963-10-80

Burstein, D., Taft, & Keefer. (n.d.). Relationship Between Illness Disclosure, Quality of Life, and

Treatment Adherence in Inflammatory Bowel Disease Patients. 2.

Bury, M. (1982). Chronic illness as biographical disruption. Sociology of Health & Illness, 4(2),

167–182.

218

Callahan, D. (2013). Children, Stigma, and Obesity. JAMA Pediatrics, 167(9), 791–792.

https://doi.org/10.1001/jamapediatrics.2013.2814

Cameron, K., & Chouinard, V. (2014). On being a princess and a problem: Negotiating

attitudinal barriers to chronic illness in Canadian universities. Working Bodies: Chronic

Illness in the Canadian Workplace, 177–195.

Carricaburu, D., & Pierret, J. (1995). From biographical disruption to biographical

reinforcement: the case of HIV-positive men. Sociology of Health & Illness, 17(1), 65–88.

Casati, J., & Toner, B. B. (2000). Psychosocial aspects of inflammatory bowel disease.

Biomedicine & Pharmacotherapy, 54(7), 388–393.

Casati, J., Toner, B. B., De Rooy, E. C., Drossman, D. A., & Maunder, R. G. (2000). Concerns

of patients with inflammatory bowel disease. Digestive Diseases and Sciences, 45(1), 26–

31.

Castleberry, A. (2014). NVivo 10 [software program]. Version 10. QSR International; 2012.

American Journal of Pharmaceutical Education, 78(1).

CDC. (2016, December 5). CDC Winnable Battles Progress Report. Retrieved May 23, 2018,

from Centers for Disease Control and Prevention website:

https://www.cdc.gov/winnablebattles/report/index.html

CDC. (2019a, March 8). About Chronic Diseases | CDC. Retrieved April 27, 2019, from Centers

for Disease Control and Prevention website:

https://www.cdc.gov/chronicdisease/about/index.htm

CDC. (2019b, April 15). Chronic Diseases in America | CDC. Retrieved April 27, 2019, from

https://www.cdc.gov/chronicdisease/resources/infographic/chronic-diseases.htm

219

Chandra, P. S., Deepthivarma, S., Jairam, K. R., & Thomas, T. (2003). Relationship of

psychological morbidity and quality of life to illness-related disclosure among HIV-infected

persons. Journal of Psychosomatic Research, 54(3), 199–203.

https://doi.org/10.1016/S0022-3999(02)00567-6

Chapple, A., Ziebland, S., & McPherson, A. (2004). Stigma, shame, and blame experienced by

patients with lung cancer: qualitative study. Bmj, 328(7454), 1470.

Charmaz, K. (1983). Loss of self: a fundamental form of suffering in the chronically ill.

Sociology of Health & Illness, 5(2), 168–195.

Charmaz, K. (1993). Good days, bad days: The self in chronic illness and time. Rutgers

University Press.

Charmaz, K. (2002). Charmaz / STORIES AND SILENCES ARTICLES Stories and Silences:

Disclosures and Self in Chronic Illness.

Charmaz, K. (2010). Disclosing illness and disability in the workplace. Journal of International

Education in Business, 3(1/2), 6–19. https://doi.org/10.1108/18363261011106858

Charmaz, K. (2014). Constructing Grounded Theory. SAGE.

Church, K., Frazee, C., Panitch, M., Luciani, T., & Bowman, V. (2008). Doing disability at the

bank: Discovering the work of informal learning/teaching done by disabled bank

employees. In The Future of Lifelong Learning and Work (pp. 147–153). Brill Sense.

Clair, J. A., Beatty, J. E., & Maclean, T. L. (2005). Out of Sight but Not out of Mind: Managing

Invisible Social Identities in the Workplace. The Academy of Management Review, 30(1),

78–95. https://doi.org/10.2307/20159096

220

Clarke, J. N., & James, S. (2003a). The radicalized self: the impact on the self of the contested

nature of the diagnosis of chronic fatigue syndrome. Social Science & Medicine, 57(8),

1387–1395.

Clarke, J. N., & James, S. (2003b). The radicalized self: the impact on the self of the contested

nature of the diagnosis of chronic fatigue syndrome. Social Science & Medicine, 57(8),

1387–1395.

Cleynen, I., Boucher, G., Jostins, L., Schumm, L. P., Zeissig, S., Ahmad, T., … Brand, S. (2016).

Inherited determinants of Crohn’s disease and ulcerative colitis phenotypes: a genetic

association study. The Lancet, 387(10014), 156–167.

Cockerham, W. C. (2017). Illness behavior. In Medical Sociology (pp. 184–202). Routledge.

Corrigan, P., & Matthews, A. (2003). Stigma and disclosure: Implications for coming out of the

closet. Journal of Mental Health, 12(3), 235–248.

Corrigan, P. W., & Miller, F. E. (2004). Shame, blame, and contamination: A review of the

impact of mental illness stigma on family members. Journal of Mental Health, 13(6), 537–

548.

Cotton, R. (2017). Supporting students with inflammatory bowel disease. British Journal of

School Nursing, 12(4), 168–170.

Creswell, J. W., & Miller, D. L. (2000). Determining validity in qualitative inquiry. Theory into

Practice, 39(3), 124–130.

Crohn’s & Colitis Foundation. (n.d.). What is Crohn’s Disease | Causes of Crohn’s | Crohn’s &

Colitis Foundation. Retrieved April 27, 2019, from

https://www.crohnscolitisfoundation.org/what-are-crohns-and-colitis/what-is-crohns-

disease/

221

Crooks, V. A., Chouinard, V., & Wilton, R. D. (2008). Understanding, embracing, rejecting:

Women’s negotiations of disability constructions and categorizations after becoming

chronically ill. Social Science & Medicine (1982), 67(11), 1837–1846.

https://doi.org/10.1016/j.socscimed.2008.07.025

Curtin, R., Presser, S., & Singer, E. (2000). The effects of response rate changes on the index of

consumer sentiment. Public Opinion Quarterly, 64(4), 413–428.

Curtin, R., Presser, S., & Singer, E. (2005). Changes in telephone survey nonresponse over the

past quarter century. Public Opinion Quarterly, 69(1), 87–98.

Daker-White, G., Rogers, A., Kennedy, A., Blakeman, T., Blickem, C., & Chew-Graham, C.

(2015). Non-disclosure of chronic kidney disease in primary care and the limits of

instrumental rationality in chronic illness self-management. Social Science & Medicine,

131, 31–39. https://doi.org/10.1016/j.socscimed.2015.02.035

Defenbaugh, N. L. (2013). Revealing and concealing ill identity: A performance narrative of

IBD disclosure. Health Communication, 28(2), 159–169.

Dennis, S. M., Zwar, N., Griffiths, R., Roland, M., Hasan, I., Powell Davies, G., & Harris, M.

(2008). Chronic disease management in primary care: from evidence to policy. Medical

Journal of Australia, 188, S53–S56.

Denzin, N. K., & Lincoln, Y. S. (2008). Strategies of qualitative inquiry (Vol. 2). Sage.

Dickson, A., Knussen, C., & Flowers, P. (2007). Stigma and the delegitimation experience: An

interpretative phenomenological analysis of people living with chronic fatigue syndrome.

Psychology and Health, 22(7), 851–867.

222

Dominguez, S., & Watkins, C. (2003). Creating networks for survival and mobility: Social

capital among African-American and Latin-American low-income mothers. Social

Problems, 50(1), 111–135.

Dumit, J. (2006). Illnesses you have to fight to get: Facts as forces in uncertain, emergent

illnesses. Social Science & Medicine, 62(3), 577–590.

Dunstan, D. A., & Maceachen, E. (2014). A theoretical model of co-worker responses to work

reintegration processes. Journal of Occupational Rehabilitation, 24(2), 189–198.

Dyck, I. (1995). Hidden geographies: the changing lifeworlds of women with multiple sclerosis.

Social Science & Medicine, 40(3), 307–320.

Edin, K., & Kefalas, M. (2011). Promises I can keep: Why poor women put motherhood before

marriage. Univ of California Press.

Elder, G. H. (1975). Age Differentiation and the Life Course. Annual Review of Sociology, 1,

165–190.

Elder, G. H. (1994). Time, human agency, and social change: Perspective on the life course.

Social Psychology Quarterly, 57, 4–4.

Elder, G. H. (1998). The life course as developmental theory. Child Development, 69(1), 1–12.

Elder Jr, G. H. (1985). Life course dynamics: trajectories and transitions 1968-1980.

Elder Jr, G. H. (1994). Time, human agency, and social change: Perspectives on the life course.

Social Psychology Quarterly, 4–15.

Elder Jr, G. H. (1999). Children of the Great Depression: Social change in life experience .

Retrieved from http://psycnet.apa.org/psycinfo/1998-06389-000

223

Elder Jr, G. H., Johnson, M. K., & Crosnoe, R. (2003). The emergence and development of life

course theory. Retrieved from http://link.springer.com/chapter/10.1007/978-0-306-48247-

2_1

Elder Jr, G. H., Van Nguyen, T., & Caspi, A. (1985). Linking family hardship to children’s lives.

Child Development, 361–375.

Ellison, M. L., Russinova, Z., MacDonald-Wilson, K. L., & Lyass, A. (n.d.). Patterns and

correlates of workplace disclosure among professionals and managers with psychiatric

conditions. 13.

Facey, M. E., & Eakin, J. M. (2010). Contingent work and ill-health: conceptualizing the links.

Social Theory & Health, 8(4), 326–349.

Faircloth, C. A., Boylstein, C., Rittman, M., Young, M. E., & Gubrium, J. (2004a). Sudden

illness and biographical flow in narratives of stroke recovery. Sociology of Health & Illness,

26(2), 242–261.

Faircloth, C. A., Boylstein, C., Rittman, M., Young, M. E., & Gubrium, J. (2004b). Sudden

illness and biographical flow in narratives of stroke recovery. Sociology of Health & Illness,

26(2), 242–261. https://doi.org/10.1111/j.1467-9566.2004.00388.x

Falvo, D. R., & Holland, B. (2018). Medical and psychosocial aspects of chronic illness and

disability (Sixth edition). Burlington, MA: Jones & Bartlett Learning.

Feagan, B. G., Bala, M., Yan, S., Olson, A., & Hanauer, S. (2005). Unemployment and

Disability in Patients With Moderately to Severely Active Crohn’s Disease. Journal of

Clinical Gastroenterology, 39(5), 390.

https://doi.org/10.1097/01.mcg.0000159220.70290.41

224

Fennell, P. (2003). Managing Chronic Illness Using the Four-phase Treatment Approach: A

Mental Health Professional’s Guide to Helping Chronically Ill People. John Wiley & Sons

Incorporated.

Fiest, K. M., Bernstein, C. N., Walker, J. R., Graff, L. A., Hitchon, C. A., Peschken, C. A., …

Sareen, J. (2016). Systematic review of interventions for depression and anxiety in persons

with inflammatory bowel disease. BMC Research Notes, 9(1), 404.

Fowler, H. S. (2011). Employees’ perspectives on intermittent work capacity: What can

qualitative research tell us in Ontario? Deliverable #5 – Final report. Ottawa: Social

Research and Demonstration Corporation. - Google Search. Retrieved April 27, 2019, from

https://www.google.com/search?q=Fowler%2C+Heather+Smith.+(2011).+Employees%E2

%80%99+perspectives+on+intermittent+work+capacity%3A+What+can+qualitative+resear

ch+tell+us+in+Ontario%3F+Deliverable+%235+%E2%80%93+Final+report.+Ottawa%3A

+Social+Research+and+Demonstration+Corporation.&oq=Fowler%2C+Heather+Smith.+(2

011).+Employees%E2%80%99+perspectives+on+intermittent+work+capacity%3A+What+

can+qualitative+research+tell+us+in+Ontario%3F+Deliverable+%235+%E2%80%93+Fina

l+report.+Ottawa%3A+Social+Research+and+Demonstration+Corporation.&aqs=chrome..

69i57.280j0j4&sourceid=chrome&ie=UTF-8

Frank, A. (1995). The wounded storyteller: Body, illness.

Frankenberg, R. (1986). Sickness as cultural performance: Drama, trajectory, and pilgrimage

root metaphors and the making social of disease. International Journal of Health Services,

16(4), 603–626.

Frohlich, D. O. (2014). Support often outweighs stigma for people with inflammatory bowel

disease. Gastroenterology Nursing, 37(2), 126–136.

225

Fuchs, C. M. (2018). Retrospective schooling reflections among young adults with pediatric-

onset inflammatory bowel disease: an interpretative phenomenological analysis (PhD

Thesis). University of British Columbia.

Gabe, J., & Monaghan, L. (2013). Key concepts in medical sociology. Sage.

Ganz, M. L., Sugarman, R., Wang, R., Hansen, B. B., & H\a akan-Bloch, J. (2016). The

economic and health-related impact of Crohn’s disease in the United States: evidence from

a nationally representative survey. Inflammatory Bowel Diseases, 22(5), 1032–1041.

Giddens, A. (1979). Central problems in social theory: Action, structure, and contradiction in

social analysis (Vol. 241). Univ of California Press.

Giele, J. Z., & Elder, G. H. (1998). Life course research: Development of a field. Methods of Life

Course Research: Qualitative and Quantitative Approaches, 5–27.

Gignac, M. A. M., & Cao, X. (2009). “Should I tell my employer and coworkers I have

arthritis?” A longitudinal examination of self-disclosure in the work place. Arthritis Care &

Research, 61(12), 1753–1761. https://doi.org/10.1002/art.24889

Goffman, E. (1959). The Presentation of Self in Everyday Life. New York: Anchor. 1963 Stigma.

Englewood Cliffs, NJ: Prentice-Hall.

Goffman, E. (1963). Stigma: Notes on the management of spoiled identity. Simon and Schuster.

Golafshani, N. (2003). Understanding reliability and validity in qualitative research. The

Qualitative Report, 8(4), 597–606.

Goyder, J., Warriner, K., & Miller, S. (2002). Evaluating socio-economic status (SES) bias in

survey nonresponse. JOURNAL OF OFFICIAL STATISTICS-STOCKHOLM-, 18(1), 1–12.

226

Graff, L. A., Walker, J. R., & Bernstein, C. N. (2009). Depression and anxiety in inflammatory

bowel disease: A review of comorbidity and management: Inflammatory Bowel Diseases,

15(7), 1105–1118. https://doi.org/10.1002/ibd.20873

Green, G., Todd, J., & Pevalin, D. (2007). Biographical disruption associated with multiple

sclerosis: Using propensity scoring to assess the impact. Social Science & Medicine, 65(3),

524–535.

Gregory, S. (2005). Living with chronic illness in the family setting. Sociology of Health &

Illness, 27(3), 372–392.

Groshek, J., Basil, M., Guo, L., Ward, S. P., Farraye, F. A., & Reich, J. (2017). Media

consumption and creation in attitudes toward and knowledge of inflammatory bowel

disease: web-based survey. Journal of Medical Internet Research, 19(12), e403.

Groves, R. M., Singer, E., & Corning, A. (2000). Leverage-saliency theory of survey

participation: description and an illustration. The Public Opinion Quarterly, 64(3), 299–308.

Grue, J. (2016). ILLNESS IS WORK: Revisiting the concept of illness careers and recognizing

the identity work of patients with ME/CFS. Health:, 20(4), 401–412.

Grzybowski, A., & Nita, M. (2016). Leprosy in the Bible. 34(1), 3–7.

https://doi.org/10.1016/j.clindermatol.2015.10.003

Guba, E. G., & Lincoln, Y. S. (1994). Competing paradigms in qualitative research. Handbook of

Qualitative Research, 2(163–194), 105.

Guthrie, E., Tomenson, B., & Creed, F. (2002). Psychological Disorder and Severity of

Inﬂammatory Bowel Disease Predict Health-Related Quality of Life in Ulcerative Colitis

and Crohn’s Disease. 97(8), 6.

227

Hanghøj, S., & Boisen, K. A. (2014). Self-Reported Barriers to Medication Adherence Among

Chronically Ill Adolescents: A Systematic Review. Journal of Adolescent Health, 54(2),

121–138. https://doi.org/10.1016/j.jadohealth.2013.08.009

Hannum, S. M., & Rubinstein, R. L. (2016). The meaningfulness of time; Narratives of cancer

among chronically ill older adults. Journal of Aging Studies, 36, 17–25.

https://doi.org/10.1016/j.jaging.2015.12.006

Häuser, W., Janke, K.-H., Klump, B., & Hinz, A. (2011). Anxiety and depression in patients with

inflammatory bowel disease: comparisons with chronic liver disease patients and the

general population. Inflammatory Bowel Diseases, 17(2), 621–632.

Hebl, M., Madera, J. M., & King, E. (2008). Exclusion, avoidance and social distancing.

Diversity Resistance in Organisations, 127–150.

Heijnders, M. L. (2004). The Dynamics of Stigma in Leprosy. International Journal of Leprosy

and Other Mycobacterial Diseases, 72(4), 437. https://doi.org/10.1489/1544-

581X(2004)72<437:TDOSIL>2.0.CO;2

Henderson, C., Brohan, E., Clement, S., Williams, P., Lassman, F., Schauman, O., … Murphy,

C. (2013). Decision aid on disclosure of mental health status to an employer: feasibility and

outcomes of a randomised controlled trial. The British Journal of Psychiatry, 203(5), 350–

357.

Hernandez, B., Keys, C., & Balcazar, F. (2000). Employer attitudes toward workers with

disabilities and their ADA employment rights: A literature review. JOURNAL OF

REHABILITATION-WASHINGTON-, 66(4), 4–16.

Hoppe, T. (2014). From sickness to badness: The criminalization of HIV in Michigan. Social

Science & Medicine, 101, 139–147.

228

Hydén, L.-C. (2010). Identity, self, narrative. Beyond Narrative Coherence, 11, 33–47.

Irvine, A. (2011). Something to declare? The disclosure of common mental health problems at

work. Disability & Society, 26(2), 179–192. https://doi.org/10.1080/09687599.2011.544058

Jaarsma, T., Cameron, J., Riegel, B., & Stromberg, A. (2017). Factors related to self-care in heart

failure patients according to the middle-range theory of self-care of chronic illness: a

literature update. Current Heart Failure Reports, 14(2), 71–77.

Jacoby, A., Snape, D., & Baker, G. A. (2005). Epilepsy and social identity: the stigma of a

chronic neurological disorder. The Lancet Neurology, 4(3), 171–178.

Jans, L. H., Kaye, H. S., & Jones, E. C. (2012). Getting hired: Successfully employed people

with disabilities offer advice on disclosure, interviewing, and job search. Journal of

Occupational Rehabilitation, 22(2), 155–165.

Jeon, Y.-H., Jowsey, T., Yen, L., Glasgow, N. J., Essue, B., Kljakovic, M., … Jan, S. (2010).

Achieving a balanced life in the face of chronic illness. Australian Journal of Primary

Health, 16(1), 66–74.

Jeon, Y.-H., Kraus, S. G., Jowsey, T., & Glasgow, N. J. (2010). The experience of living with

chronic heart failure: a narrative review of qualitative studies. BMC Health Services

Research, 10(1), 77. https://doi.org/10.1186/1472-6963-10-77

Jeppsson Grassman, E., Holme, L., Taghizadeh Larsson, A., & Whitaker, A. (2012). A long life

with a particular signature: life course and aging for people with disabilities. Journal of

Gerontological Social Work, 55(2), 95–111. https://doi.org/10.1080/01634372.2011.633975

Joachim, G., & Acorn, S. (2000). Stigma of visible and invisible chronic conditions. Journal of

Advanced Nursing, 32(1), 243–248.

229

Joachim Gloria, & Acorn Sonia. (2001). Stigma of visible and invisible chronic conditions.

Journal of Advanced Nursing, 32(1), 243–248. https://doi.org/10.1046/j.1365-

2648.2000.01466.x

Jones, E. E. (1984). Social stigma: The psychology of marked relationships. WH Freeman.

Kalichman, S. C., DiMarco, M., Austin, J., Luke, W., & DiFonzo, K. (2003). Stress, Social

Support, and HIV-Status Disclosure to Family and Friends Among HIV-Positive Men and

Women. Journal of Behavioral Medicine, 18.

Kappelman, M. D., Rifas–Shiman, S. L., Kleinman, K., Ollendorf, D., Bousvaros, A., Grand, R.

J., & Finkelstein, J. A. (2007). The prevalence and geographic distribution of Crohn’s

disease and ulcerative colitis in the United States. Clinical Gastroenterology and

Hepatology, 5(12), 1424–1429.

Katerndahl, D. A., & Parchman, M. (2002). The ability of the stress process model to explain

mental health outcomes. Comprehensive Psychiatry, 43(5), 351–360.

Kaushansky, D., Cox, J., Dodson, C., McNeely, Mi., Sinthu, K., & Iverson, E. (2017). Living a

secret: Disclosure among adolescents and young adults with chronic illnesses. Chronic

Illness, 13(1), 49–61.

Kirk, J., Miller, M. L., & Miller, M. L. (1986). Reliability and validity in qualitative research

(Vol. 1). Sage.

Kleinman, A. (1992). Local worlds of suffering: An interpersonal focus for ethnographies of

illness experience. Qualitative Health Research, 2(2), 127–134.

Kleinman, A. (1995). Pitch, picture, power: The globalization of local suffering and the

transformation of social experience. Ethnos, 60(3–4), 181–191.

230

Kleinman, A., Wang, W.-Z., Li, S.-C., Cheng, X.-M., Dai, X.-Y., Li, K.-T., & Kleinman, J.

(1995). The social course of epilepsy: chronic illness as social experience in interior China.

Social Science & Medicine, 40(10), 1319–1330.

Klemm, P., Hurst, M., Dearholt, S. L., & Trone, S. R. (1999). Gender differences on Internet

cancer support groups. Computers in Nursing, 17(2), 65–72.

Knowles, S., Andrews, J. M., & Porter, A. (2018). Predictors of Impaired Mental Health and

Support Seeking in Adults With Inflammatory Bowel Disease. Gastroenterology Nursing,

41(1), 38–46.

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.

Kvaal, K., Halding, A.-G., & Kvigne, K. (2014a). Social provision and loneliness among older

people suffering from chronic physical illness. A mixed-methods approach. Scandinavian

Journal of Caring Sciences, 28(1), 104–111.

Kvaal, K., Halding, A.-G., & Kvigne, K. (2014b). Social provision and loneliness among older

people suffering from chronic physical illness. A mixed-methods approach. Scandinavian

Journal of Caring Sciences, 28(1), 104–111.

Larsson, A. T., & Grassman, E. J. (2012). Bodily changes among people living with physical

impairments and chronic illnesses: biographical disruption or normal illness? Sociology of

Health & Illness, 34(8), 1156–1169.

Leaffer, E. B., Hesdorffer, D. C., & Begley, C. (2014). Psychosocial and sociodemographic

associates of felt stigma in epilepsy. Epilepsy & Behavior, 37, 104–109.

https://doi.org/10.1016/j.yebeh.2014.06.006

231

Leveälahti, H., Tishelman, C., & Öhlén, J. (2007). Framing the onset of lung cancer

biographically: narratives of continuity and disruption. Psycho-Oncology, 16(5), 466–473.

Levine, A. P., Pontikos, N., Schiff, E. R., Jostins, L., Speed, D., Lovat, L. B., … Segal, A. W.

(2016). Genetic complexity of Crohn’s disease in two large Ashkenazi Jewish families.

Gastroenterology, 151(4), 698–709.

Liamputtong, P., & Suwankhong, D. (2015a). Therapeutic landscapes and living with breast

cancer: The lived experiences of Thai women. Social Science & Medicine, 128, 263–271.

Liamputtong, P., & Suwankhong, D. (2015b). Therapeutic landscapes and living with breast

cancer: The lived experiences of Thai women. Social Science & Medicine, 128, 263–271.

Lincoln, Y. S., & Guba, E. G. (1985). Establishing trustworthiness. Naturalistic Inquiry, 289,

331.

Lindsay, S. (2009). Prioritizing illness: lessons in self-managing multiple chronic diseases.

Canadian Journal of Sociology, 34(4), 983–1002.

Lindsey, E. (1997). Experiences of the chronically ill: a covert caring for the self. Journal of

Holistic Nursing, 15(3), 227–242.

Link, B. G., & Phelan, J. C. (2001). Conceptualizing stigma. Annual Review of Sociology, 27(1),

363–385.

Livneh, H., & Antonak, R. F. (2005a). Psychosocial adaptation to chronic illness and disability:

A primer for counselors. Journal of Counseling & Development, 83(1), 12–20.

Livneh, H., & Antonak, R. F. (2005b). Psychosocial adaptation to chronic illness and disability:

A primer for counselors. Journal of Counseling & Development, 83(1), 12–20.

232

Llewellyn, H., Low, J., Smith, G., Hopkins, K., Burns, A., & Jones, L. (2014). Narratives of

continuity among older people with late stage chronic kidney disease who decline dialysis.

Social Science & Medicine, 114, 49–56. https://doi.org/10.1016/j.socscimed.2014.05.037

Locke, L. F., Spirduso, W. W., & Silverman, S. J. (2014). Proposals that work. Sage.

Lysaght, R., & Krupa, T. (2014). Employers’ perspectives on workplace accommodation of

chronic health conditions. Working Bodies: Chronic Illness in the Canadian Workplace,

91–113.

MacDonald-Wilson, K. L., Russinova, Z., Rogers, E. S., Lin, C. H., Ferguson, T., Dong, S., &

MacDonald, M. K. (2011). Disclosure of mental health disabilities in the workplace. In

Work accommodation and retention in mental health (pp. 191–217). Springer.

Mahajan, A. P., Sayles, J. N., Patel, V. A., Remien, R. H., Ortiz, D., Szekeres, G., & Coates, T. J.

(2008). Stigma in the HIV/AIDS epidemic: A review of the literature and recommendations

for the way forward. AIDS (London, England), 22(Suppl 2), S67–S79.

https://doi.org/10.1097/01.aids.0000327438.13291.62

Marinho, R. T., & Barreira, D. P. (2013). Hepatitis C, stigma and cure. World Journal of

Gastroenterology : WJG, 19(40), 6703–6709. https://doi.org/10.3748/wjg.v19.i40.6703

Marri, S. R., & Buchman, A. L. (2005). The Education and Employment Status of Patients with

Inflammatory Bowel Diseases. Inflammatory Bowel Diseases, 11(2), 171–177.

https://doi.org/10.1097/00054725-200502000-00011

Mason, J. (1996). Qualitative researching Sage. London.

Mawdsley, J. E., & Rampton, D. S. (2005). Psychological stress in IBD: new insights into

pathogenic and therapeutic implications. Gut, 54(10), 1481–1491.

233

Maxwell, J. (1992). Understanding and validity in qualitative research. Harvard Educational

Review, 62(3), 279–301.

Maxwell, J. A. (2012). Qualitative research design: An interactive approach (Vol. 41). Sage

publications.

McGonagle, A. K., & Hamblin, L. E. (2014a). Proactive responding to anticipated discrimination

based on chronic illness: double-edged sword? Journal of Business and Psychology, 29(3),

427–442.

McGonagle, A. K., & Hamblin, L. E. (2014b). Proactive Responding to Anticipated

Discrimination Based on Chronic Illness: Double-Edged Sword? Journal of Business and

Psychology, 29(3), 427–442. https://doi.org/10.1007/s10869-013-9324-7

McKeown, R. E. (2009). The Epidemiologic Transition: Changing Patterns of Mortality and

Population Dynamics. American Journal of Lifestyle Medicine, 3(1 Suppl), 19S-26S.

https://doi.org/10.1177/1559827609335350

McPhail, S. M. (2016). Multimorbidity in chronic disease: impact on health care resources and

costs. Risk Management and Healthcare Policy, 9, 143.

Merriam, S. B. (1998a). Qualitative Research and Case Study Applications in Education.

Revised and Expanded from" Case Study Research in Education.". ERIC.

Merriam, S. B. (1998b). Qualitative Research and Case Study Applications in Education.

Revised and Expanded from" Case Study Research in Education.". ERIC.

Merriam, S. B., & Grenier, R. S. (2019). Qualitative research in practice: Examples for

discussion and analysis. Jossey-Bass.

234

Mikocka-Walus, A., Knowles, S. R., Keefer, L., & Graff, L. (2016). Controversies revisited: a

systematic review of the comorbidity of depression and anxiety with inflammatory bowel

diseases. Inflammatory Bowel Diseases, 22(3), 752–762.

Millen, N., & Walker, C. (2000). Overcoming the stigma of chronic illness: Strategies for

‘straightening out’a spoiled identity. Sociological Sights/Sites, TASA 2000 Conference,

Adelaide: Flinders University. December, 6–8.

Mittermaier, C., Dejaco, C., Waldhoer, T., Oefferlbauer-Ernst, A., Miehsler, W., Beier, M., …

Moser, G. (2004). Impact of depressive mood on relapse in patients with inflammatory

bowel disease: a prospective 18-month follow-up study. Psychosomatic Medicine, 66(1),

79–84.

Moore, D. L., & Tarnai, J. (2002). Evaluating nonresponse error in mail surveys. Survey

Nonresponse, 197–211.

Moore, G. A., Hawley, D. A., & Bradley, P. (2008). Hepatitis C: studying stigma.

Gastroenterology Nursing : The Official Journal of the Society of Gastroenterology Nurses

and Associates, 31(5), 346–352. https://doi.org/10.1097/01.SGA.0000338279.40412.96

Munir, F., Leka, S., & Griffiths, A. (2005). Dealing with self-management of chronic illness at

work: predictors for self-disclosure. Social Science & Medicine, 60(6), 1397–1407.

https://doi.org/10.1016/j.socscimed.2004.07.012

Munir, Fehmidah, Jones, D., Leka, S., & Griffiths, A. (2005). Work limitations and employer

adjustments for employees with chronic illness. International Journal of Rehabilitation

Research, 28(2), 111–117.

235

Munir, Fehmidah, Leka, S., & Griffiths, A. (2005). Dealing with self-management of chronic

illness at work: predictors for self-disclosure. Social Science & Medicine, 60(6), 1397–

1407.

Murray, C. J., Abraham, J., Ali, M. K., Alvarado, M., Atkinson, C., Baddour, L. M., … Birbeck,

G. (2013). The state of US health, 1990-2010: burden of diseases, injuries, and risk factors.

Jama, 310(6), 591–606.

Nagin, D. S., Pagani, L., Tremblay, R. E., & Vitaro, F. (2003a). Life course turning points: The

effect of grade retention on physical aggression. Development and Psychopathology, 15(2),

343–361.

Nagin, D. S., Pagani, L., Tremblay, R. E., & Vitaro, F. (2003b). Life course turning points: The

effect of grade retention on physical aggression. Development and Psychopathology, 15(2),

343–361.

Nahon, S., Lahmek, P., Durance, C., Olympie, A., Lesgourgues, B., Colombel, J.-F., & Gendre,

J.-P. (2012). Risk factors of anxiety and depression in inflammatory bowel disease.

Inflammatory Bowel Diseases, 18(11), 2086–2091.

Nigro, G., Angelini, G., Grosso, S. B., Caula, G., & Sategna-Guidetti, C. (2001). Psychiatric

predictors of noncompliance in inflammatory bowel disease: psychiatry and compliance.

Journal of Clinical Gastroenterology, 32(1), 66–68.

NIMH. (2017). NIMH » Depression. Retrieved April 27, 2019, from

https://www.nimh.nih.gov/health/topics/depression/index.shtml

Nimmons, D., & Limdi, J. K. (2016). Elderly patients and inflammatory bowel disease. World

Journal of Gastrointestinal Pharmacology and Therapeutics, 7(1), 51.

236

Noor, A., Bashir, S., & Earnshaw, V. A. (2016). Bullying, internalized hepatitis (Hepatitis C

virus) stigma, and self-esteem: Does spirituality curtail the relationship in the workplace.

Journal of Health Psychology, 21(9), 1860–1869.

https://doi.org/10.1177/1359105314567211

Nowakowski, J., Chrobak, A. A., & Dudek, D. (2016). Psychiatric illnesses in inflammatory

bowel diseases-psychiatric comorbidity and biological underpinnings. Psychiatr Pol, 50(6),

1157–1166.

Oldfield, M., MacEachen, E., Kirsh, B., & MacNeill, M. (2016a). Impromptu everyday

disclosure dances: how women with fibromyalgia respond to disclosure risks at work.

Disability and Rehabilitation, 38(15), 1442–1453.

Oldfield, M., MacEachen, E., Kirsh, B., & MacNeill, M. (2016b). Impromptu everyday

disclosure dances: how women with fibromyalgia respond to disclosure risks at work.

Disability & Rehabilitation, 38(15), 1442–1453.

https://doi.org/10.3109/09638288.2015.1103794

Omran, A. R. (2005). The Epidemiologic Transition: A Theory of the Epidemiology of

Population Change. The Milbank Quarterly, 83(4), 731–757. https://doi.org/10.1111/j.1468-

0009.2005.00398.x

Ornstein, S. M., Nietert, P. J., Jenkins, R. G., & Litvin, C. B. (2013). The prevalence of chronic

diseases and multimorbidity in primary care practice: a PPRNet report. J Am Board Fam

Med, 26(5), 518–524.

Parcesepe, A. M., & Cabassa, L. J. (2013). Public Stigma of Mental Illness in the United States:

A Systematic Literature Review. Administration and Policy in Mental Health and Mental

Health Services Research, 40(5), 384–399. https://doi.org/10.1007/s10488-012-0430-z

237

Parsons, T. (1975). The sick role and the role of the physician reconsidered. The Milbank

Memorial Fund Quarterly. Health and Society, 257–278.

Patterson, C. L., & Singer, J. A. (2007). Exploring the Role of Expectancies in the Mental and

Physical Health Outcomes of Written Self-Disclosure. Imagination, Cognition and

Personality, 27(2), 99–115. https://doi.org/10.2190/IC.27.2.b

Patton, M. Q. (1990). Qualitative evaluation and research methods. SAGE Publications, inc.

Pearlin, L. (2002). Some institutional and stress process perspectives on religion and health.

Psychological Inquiry, 13(3), 217–220.

Pearlin, L. I. (2009). The life course and the stress process: Some conceptual comparisons.

Journals of Gerontology Series B: Psychological Sciences and Social Sciences, 65(2), 207–

215.

Pearlin, L. I., Schieman, S., Fazio, E. M., & Meersman, S. C. (2005). Stress, Health, and the Life

Course: Some Conceptual Perspectives. Journal of Health and Social Behavior, 46(2), 205–

219. https://doi.org/10.1177/002214650504600206

Pescosolido, B. A. (2014). Patient Trajectories. In W. C. Cockerham, R. Dingwall, & S. Quah

(Eds.), The Wiley Blackwell Encyclopedia of Health, Illness, Behavior, and Society (pp.

1770–1777). https://doi.org/10.1002/9781118410868.wbehibs282

Phelan, S. M., Burgess, D. J., Yeazel, M. W., Hellerstedt, W. L., Griffin, J. M., & van Ryn, M.

(2015). Impact of weight bias and stigma on quality of care and outcomes for patients with

obesity: Obesity stigma and patient care. Obesity Reviews, 16(4), 319–326.

https://doi.org/10.1111/obr.12266

238

Pound, P., Gompertz, P., & Ebrahim, S. (1998). Illness in the Context of Older Age: The Case of

Stroke. Sociology of Health & Illness, 20(4), 489–506. https://doi.org/10.1111/1467-

9566.00112

Puhl. (2009). The Stigma of Obesity: A Review and Update -. Obesity. Retrieved from

https://onlinelibrary.wiley.com/doi/full/10.1038/oby.2008.636

Raheim, & Haland, W. (2006). Lived experience of chronic pain and fibromyalgia: Women’s

stories from daily life. Qualitative Health Research, 16(6), 741–761.

Raymond-Barker, P., Griffith, G. M., & Hastings, R. P. (2018). Biographical disruption:

Experiences of mothers of adults assessed for autism spectrum disorder. Journal of

Intellectual & Developmental Disability, 43(1), 83–92.

Richardson, C. R. (2005). A lifestyle physical activity program for persons with serious mental

illness. Psychiatric Services, 56(3), 354–354.

Richardson, J. C., Ong, B. N., & Sim, J. (2006a). Remaking the future: contemplating a life with

chronic widespread pain. Chronic Illness, 2(3), 209–218.

Richardson, J. C., Ong, B. N., & Sim, J. (2006b). Remaking the future: contemplating a life with

chronic widespread pain. Chronic Illness, 2(3), 209–218.

Roberts, K., & Clarke, C. (2009). Future disorientation following gynaecological cancer:

Women’s conceptualisation of risk after a life threatening illness. Health, Risk & Society,

11(4), 353–366. https://doi.org/10.1080/13698570903013623

Rohde, J. A., Wang, Y., Cutino, C. M., Dickson, B. K., Bernal, M. C., Bronda, S., … Farraye, F.

A. (2018). Impact of Disease Disclosure on Stigma: An Experimental Investigation of

College Students’ Reactions to Inflammatory Bowel Disease. Journal of Health

Communication, 23(1), 91–97. https://doi.org/10.1080/10810730.2017.1392653

239

Rönkä, A., Oravala, S., & Pulkkinen, L. (2003a). Turning points in adults’ lives: The effects of

gender and the amount of choice. Journal of Adult Development, 10(3), 203–215.

Rossen, C. B., Buus, N., Stenager, E., & Stenager, E. (2017). Identity work and illness careers of

patients with medically unexplained symptoms. Health, 1363459317739440.

Salminen, S., & Glad, T. (1992). The role of gender in helping behavior. The Journal of Social

Psychology, 132(1), 131–133.

Sanderson, T., Calnan, M., Morris, M., Richards, P., & Hewlett, S. (2011). Shifting normalities:

interactions of changing conceptions of a normal life and the normalisation of symptoms in

rheumatoid arthritis: Changing conceptions of a normal life and rheumatoid arthritis.

Sociology of Health & Illness, 33(4), 618–633. https://doi.org/10.1111/j.1467-

9566.2010.01305.x

Santinele Martino, A. (2017a). Cripping sexualities: An analytic review of theoretical and

empirical writing on the intersection of disabilities and sexualities. Sociology Compass,

11(5), e12471.

Saunders, B. (2017). ‘It seems like you’re going around in circles’: recurrent biographical

disruption constructed through the past, present and anticipated future in the narratives of

young adults with inflammatory bowel disease. Sociology of Health & Illness, 39(5), 726–

740. https://doi.org/10.1111/1467-9566.12561

Scambler, G., Heijnders, M., van Brakel, W. H., & ICRAAS. (2006). Understanding and tackling

health-related stigma. Psychology, Health & Medicine, 11(3), 269–270.

https://doi.org/10.1080/13548500600594908

Schneider, J. W., & Conrad, P. (1980). In the Closet with Illness: Epilepsy, Stigma Potential and

Information Control. Social Problems, 28(1), 32–44. https://doi.org/10.2307/800379

240

Schram, T. H. (2003). Conceptualizing qualitative inquiry: Mindwork for fieldwork in education

and the social sciences. Prentice Hall.

Sermrittirong, S. (n.d.). Stigma in leprosy: concepts, causes and determinants.

Shaw, W. S., Kristman, V. L., Williams-Whitt, K., Soklaridis, S., Huang, Y.-H., Côté, P., &

Loisel, P. (2014). The Job Accommodation Scale (JAS): Psychometric evaluation of a new

measure of employer support for temporary job modifications. Journal of Occupational

Rehabilitation, 24(4), 755–765.

Shepherd, M. A., & Gerend, M. A. (2014). The blame game: Cervical cancer, knowledge of its

link to human papillomavirus and stigma. Psychology & Health, 29(1), 94–109.

https://doi.org/10.1080/08870446.2013.834057

Shiu, S. (2001). Issues in the education of students with chronic illness. International Journal of

Disability, Development and Education, 48(3), 269–281.

https://doi.org/10.1080/10349120120073412

Shivashankar, R., Tremaine, W. J., Harmsen, W. S., & Loftus Jr, E. V. (2017). Incidence and

prevalence of Crohn’s disease and ulcerative colitis in Olmsted County, Minnesota from

1970 through 2010. Clinical Gastroenterology and Hepatology, 15(6), 857–863.

Shriver, T. E., & Waskul, D. D. (2006). Managing the uncertainties of Gulf War illness: The

challenges of living with contested illness. Symbolic Interaction, 29(4), 465–486.

Sim, J., & Madden, S. (2008). Illness experience in fibromyalgia syndrome: a metasynthesis of

qualitative studies. Social Science & Medicine, 67(1), 57–67.

Sinding, C., & Wiernikowski, J. (2008). Disruption foreclosed: older women’s cancer narratives.

Health: An Interdisciplinary Journal for the Social Study of Health, Illness and Medicine,

12(3), 389–411. https://doi.org/10.1177/1363459308090055

241

Singer, E., Van Hoewyk, J., & Maher, M. P. (2000). Experiments with incentives in telephone

surveys. Public Opinion Quarterly, 64(2), 171–188.

Singletary, S. L., & Hebl, M. R. (2009). Compensatory strategies for reducing interpersonal

discrimination: The effectiveness of acknowledgments, increased positivity, and

individuating information. Journal of Applied Psychology, 94(3), 797.

Smit, P. J., Brady, M., Carter, M., Fernandes, R., Lamore, L., Meulbroek, M., … Thompson, M.

(2012). HIV-related stigma within communities of gay men: a literature review. AIDS Care,

24(4), 405–412. https://doi.org/10.1080/09540121.2011.613910

Sontag, S. (1988). AIDS ands its metaphors. NewYork: Farrar, StrausandGiroux.

Stangl, A. L., Lloyd, J. K., Brady, L. M., Holland, C. E., & Baral, S. (2013). A systematic review

of interventions to reduce HIV-related stigma and discrimination from 2002 to 2013: how

far have we come? Journal of the International AIDS Society, 16, 18734.

https://doi.org/10.7448/IAS.16.3.18734

Stone, L. (2014). Blame, shame and hopelessness: medically unexplained symptoms and

the’heartsink’experience. Australian Family Physician, 43(4), 191.

Stone, S. D. (1995). The myth of bodily perfection. Disability & Society, 10(4), 413–424.

Stone, S.-D., Crooks, V. A., & Owen, M. (2013). Going through the back door: Chronically ill

academics’ experiences as ‘unexpected workers.’ Social Theory & Health, 11(2), 151–174.

Sulik, G. A. (2010). Pink ribbon blues: How breast cancer culture undermines women’s health.

Oxford University Press.

Taft, T. H., & Keefer, L. (2016). A systematic review of disease-related stigmatization in

patients living with inflammatory bowel disease. Clinical and Experimental

Gastroenterology, 9, 49–58. https://doi.org/10.2147/CEG.S83533

242

The Well Project. (n.d.). The Well Project. Retrieved April 27, 2019, from The Well Project

website: https://www.thewellproject.org/

Thomas, S. V., & Nair, A. (2011). Confronting the stigma of epilepsy. Annals of Indian Academy

of Neurology, 14(3), 158–163. https://doi.org/10.4103/0972-2327.85873

Thompson, J. J. (2009). How Chronic Illness Affects Family Relationships and the Individual by.

Tiwari, N., Tiwari, S., Thakur, R., Agrawal, N., Shashikiran, N. D., & Singla, S. (2015).

Evaluation of treatment related fear using a newly developed fear scale for children:“Fear

assessment picture scale” and its association with physiological response. Contemporary

Clinical Dentistry, 6(3), 327.

Tompa, E., Scott, H., Trevithick, S., & Bhattacharyya, S. (2006). Precarious employment and

people with disabilities. Precarious Employment: Understanding Labour Market Insecurity

in Canada, 90–114.

Toth, K. E., & Dewa, C. S. (2014). Employee Decision-Making About Disclosure of a Mental

Disorder at Work. Journal of Occupational Rehabilitation, 24(4), 732–746.

https://doi.org/10.1007/s10926-014-9504-y

Turney, K. (2014). Stress proliferation across generations? Examining the relationship between

parental incarceration and childhood health. Journal of Health and Social Behavior, 55(3),

302–319.

United Ostomy Associations of America. (n.d.). What is an Ostomy? Retrieved April 28, 2019,

from United Ostomy Associations of America website: https://www.ostomy.org/what-is-an-

ostomy/

Vaingankar, J. A., Subramaniam, M., Abdin, E., He, V. Y., & Chong, S. A. (2017). How much

can I take?: predictors of perceived burden for relatives of people with chronic illness.

243

Van Dongen, C. J. (1996). Quality of life and self-esteem in working and nonworking persons

with mental illness. Community Mental Health Journal, 32(6), 535–548.

Van Langenberg, D. R., & Gibson, P. R. (2010). Systematic review: fatigue in inflammatory

bowel disease. Alimentary Pharmacology & Therapeutics, 32(2), 131–143.

Vickers, M. (2002). Work and unseen chronic illness: Silent voices. Routledge.

Vickers, M. H. (1997). Life at work with “invisible” chronic illness (ICI): The “unseen”,

unspoken, unrecognized dilemma of disclosure. Journal of Workplace Learning, 9(7), 240–

252.

Vickers, M. H. (2012). “For the Crime of Being Different….” Employee Responsibilities and

Rights Journal, 24(3), 177–195.

Voigt, L. F., Koepsell, T. D., & Daling, J. R. (2003). Characteristics of telephone survey

respondents according to willingness to participate. American Journal of Epidemiology,

157(1), 66–73.

Voinov, B., Richie, W. D., & Bailey, R. K. (2013). Depression and chronic diseases: it is time

for a synergistic mental health and primary care approach. The Primary Care Companion

for CNS Disorders, 15(2).

Walters, A. (2017). The Impact of Psychosocial Factors on Chronic Disease. Retrieved from

https://www.eatrightidaho.org/app/uploads/2016/11/pdf/w/Walters-Handout.pdf

Ware, N. C. (1992). Suffering and the social construction of illness: The delegitimation of illness

experience in chronic fatigue syndrome. Medical Anthropology Quarterly, 6(4), 347–361.

Ware, N. C., & Kleinman, A. (1992). Culture and somatic experience: the social course of illness

in neurasthenia and chronic fatigue syndrome. Psychosomatic Medicine, 54(5), 546–560.

244

Werner, A., & Malterud, K. (2003). It is hard work behaving as a credible patient: encounters

between women with chronic pain and their doctors. Social Science & Medicine, 57(8),

1409–1419.

Williams, S. (2000). Chronic illness as biographical disruption or biographical disruption as

chronic illness? Reflections on a core concept. Sociology of Health & Illness, 22(1), 40–67.

Wilson, S. (2007). ‘When you have children, you’re obliged to live’1: motherhood, chronic

illness and biographical disruption. Sociology of Health & Illness, 29(4), 610–626.

Wouters, E., & De Wet, K. (2016). Women’s experience of HIV as a chronic illness in South

Africa: hard-earned lives, biographical disruption and moral career. Sociology of Health &

Illness, 38(4), 521–542.

245

Appendix A LIST OF TABLES Table 1. Demographic Information…………………………………………….……………….259

Table 2. Remission and Surgery Status………………………….…………………………..…260

Table 3. Occupation Type and Work Status………………………………………………..…..261

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Table 1. Demographics (n=35) Median Age 38 Age Range 23-30 12 31-40 6 41-54 12 Gender Male 5 Female 27 Work Status Full-time 17 Part-time 5 Disability 6 Stay-at-home 2 Race/Ethnicity White 26 Black 1 Asian 1 Other 2 Marital Status Single 8 Married 12 Divorced 6 Widowed 0 Remarried 4 Education High School 2 Some College 3 Associates 3 Bachelors 12 Graduate Degree 10 Religion Christian 10 Catholic 4 Past 6 None 7 Spiritual/Other 3

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Table 2. Surgery and Remission demographics (n=35) Remission Yes 14 No 6 Maybe 4 Past 6

Surgeries (n=22) Bowel Resection 18 J-pouch 3 Ostomy 11 Fistula 5 Other 10 Length of DX (avg years) 24

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Table 3. Occupation Type and Status (n=35) Name* Age Work Status Occupation Education Adriana 28 Disability Neuroscientist Graduate/Professional Degree Brooklyn 46 Disability Accountant IT Bachelors Gary 44 Disability General Manager Some College Hannah 39 Disability Retail Clerk Bachelors Katelyn 46 Disability Radio Producer Graduate/Professional Degree Madeline 52 Disability Supervisor Teacher Graduate/Professional Degree Zach 31 Disability Home Inspector Bachelors Aaliyah 27 Full-time General Manager Some College Addison 27 Full-time Academic Advisor Graduate/Professional Degree Alexa 40 Full-time University Professor Graduate/Professional Degree Andrea 25 Full-time Music Teacher Graduate/Professional Degree Annabelle 24 Full-time Secretary Bachelors Brittany 27 Full-time Medical Assistant High School Cindy 39 Full-time Finance Claims Associates Daniel 37 Full-time Attorney Graduate/Professional Degree Derek 34 Full-time Pharmacy Technician Associates Frank 50 Full-time Factory Worker Bachelors Grace 45 Full-time TV Producer Bachelors Kylie 46 Full-time University Professor Graduate/Professional Degree Lily 25 Full-time Registration Secretary Bachelors Mazen 23 Full-time Model Some College Molly 28 Full-time Nanny & Student Bachelors Natalie 28 Full-time Store Clerk Some College Savannah 51 Full-time Factory Worker Bachelors Seth 25 Full-time Occupational Therapist Graduate/Professional Degree Suzie 45 Full-time Scholarship Coordinator Bachelors Wesley 54 Full-time IT Technician Associates Charlie 35 Part-time Gas Station Clerk Some College Diana 51 Part-time Cashier High School Eva 26 Part-time Photographer Bachelors

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Katherine 42 Part-time Church Secretary Bachelors Katie 41 Part-time Charity Fundraiser High School Melissa 46 Part-time Psychologist Bachelors Faith 29 Stay-at-home Middle School Teacher Bachelors Farah 34 Stay-at-home Online Translator Graduate/Professional Degree

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