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

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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 By Ginny L. Natale August 2019 © Copyright All rights reserved Except for previously published materials 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. v 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. 2 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 3 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
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