Anxious Lives: Tracing the Life Course of a Medical Diagnosis Through Illness Narratives
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University of New Hampshire University of New Hampshire Scholars' Repository Doctoral Dissertations Student Scholarship Spring 2012 Anxious lives: Tracing the life course of a medical diagnosis through illness narratives Jennifer J. Esala University of New Hampshire, Durham Follow this and additional works at: https://scholars.unh.edu/dissertation Recommended Citation Esala, Jennifer J., "Anxious lives: Tracing the life course of a medical diagnosis through illness narratives" (2012). Doctoral Dissertations. 672. https://scholars.unh.edu/dissertation/672 This Dissertation is brought to you for free and open access by the Student Scholarship at University of New Hampshire Scholars' Repository. It has been accepted for inclusion in Doctoral Dissertations by an authorized administrator of University of New Hampshire Scholars' Repository. For more information, please contact [email protected]. ANXIOUS LIVES: TRACING THE LIFE COURSE OF A MEDICAL DIAGNOSIS THROUGH ILLNESS NARRATIVES BY JENNIFER J. ESALA BA, Augsburg College, 2004 MA, Boston College, 2006 DISSERTATION Submitted to the University of New Hampshire in Partial Fulfillment of the Requirements for the Degree of Doctor of Philosophy in Sociology May, 2012 UMI Number: 3525081 All rights reserved INFORMATION TO ALL USERS The quality of this reproduction is dependent upon the quality of the copy submitted. In the unlikely event that the author did not send a complete manuscript and there are missing pages, these will be noted. Also, if material had to be removed, a note will indicate the deletion. UMI 3525081 Published by ProQuest LLC 2012. Copyright in the Dissertation held by the Author. Microform Edition © ProQuest LLC. All rights reserved. This work is protected against unauthorized copying under Title 17, United States Code. ProQuest LLC 789 East Eisenhower Parkway P.O. Box 1346 Ann Arbor, Ml 48106-1346 ALL RIGHTS RESERVED ©2012 Jennifer J. Esala This dissertation has been examined and approved. $r- Dissertation Director, Michele Dillon, Professor and Chair, Sociology C &—-v Benjamin C. Brown, Associate Professor, Sociology Heather Turner, Professor,Sociology Benjamin Harris, Professor, Psychology Julia Rodriguez, Associate Professor, History Lirtda Blum, Associate Professor, Sociology Northeastern University 2-/ 10/20 ) 2_ Date ACKNOWLEDGMENTS My work has received uncommon support from the University of New Hampshire, my advisors, peers, friends, and family. While these supporters, both individual and institutional, are only formally acknowledged on this page and the next, their encouragements, insights, and efforts are echoed on each page that follows. The things that these pages are made of—ideas, readings, conversations, critiques, revisions— are made in collaboration, and now I have the fortunate opportunity to thank my collaborators. At the heart of this dissertation are the stories of people who have experienced anxiety. I am grateful to the research participants who so generously shared their stories with me and now with you. There is much more gratitude due to my chair, Michele Dillon, than I can spell out here. I intend to spend the rest of my career thanking her for her guidance and support at its start. Here, I will limit myself to thanking Michele for her sustained support of my vision for this dissertation, from start to finish, while continuously showing me the way back to the sociological core of my arguments. I am indebted to my very helpful, knowledgeable, and reliable dissertation committee. Thank you to Heather Turner and Cliff Brown for their thoughtful comments and guidance throughout the dissertation. Thank you to Julia Rodriguez and Ben Harris for taking time away from their own departments to work with me on this dissertation. iv Lastly, thank you to Linda Blum, who has provided rigorous and intellectually stimulating feedback throughout the dissertation process. I am grateful to the Social Science Research Council for providing me funding through the Dissertation Proposal Development Fellowship to conduct pilot research and to attend workshops with leading scholars in the field to develop my dissertation proposal. I am also grateful to the University of New Hampshire for awarding me the Dissertation Year Fellowship, which allowed for a full academic year of concentrated focus on my dissertation. These fellowships were crucial to the successful and timely completion of my dissertation. My family and friends deserve many thanks - for their support of my work and, more critically to me, for their sustained support as I worked, sometimes struggled, to complete my Ph.D. My parents have been exceedingly patient with me (their daughter, the perennial student), have supported and encouraged me continuously throughout my years of education, and have kept the faith that I would, indeed, one day finish my terminal degree. Their faith in this eventuality helped me keep my own - a belief that is invaluable among the ABD. Thank you to my family in Ashland for all of their love and support. Thank you to Trisha Grover for being my vital link to the world beyond sociology and a much needed source of levity. Thank you to my peers in the sociology graduate program for being both friends and colleagues. Thank you to my husband, Jared Del Rosso, for helping me become the sociologist that I am and for being the sociologist that he is: my favorite sociologist. v TABLE OF CONTENTS LIST OF TABLES ix ABSTRACT x REVIEW OF THE LITERATURE 1 Objectivists and Constructionists 3 Constructionists and Medicalization 4 Constructionism and Ontological Gerrymandering 7 A Phenomenological Solution to Ontological Gerrymandering 11 Phenomenology and the Study of Social Materiality 15 The Body in Sociology 15 A Phenomenological Approach to the Body 18 Objects in Sociology 20 Social Construction, Power, and Diagnosis 23 A Sociology of Diagnosis 24 Plan of the Dissertation 30 METHODOLOGY AND METHODS 36 Methodology 36 Methods 42 In-Depth Interviews 43 More about the Interviewees 48 Approaching the Interview 56 Participant Observation 59 Interviews and Participant Observation 65 Analysis 69 Physically Coding the Data 69 Analytic Strategies 71 BODIES, OBJECTS, AND SOCIAL INTERACTION: 77 IDENTIFYING DISORDER BEFORE DIAGNOSIS 77 The Anxiety Experience 80 Objects of Fear 84 vi Fear is not a Historical or Cultural Constant 88 Two Variations on the Object-Response Disjuncture 91 Fearing the Mundane 93 Scary, but that THAT scary 99 Conclusion 104 FEARLESS FEAR: THE (MIS)IDENTIFICATION OF PHYSICAL AND MENTAL DISORDER 107 Emotional Accounts Ill "It Comes and Gets me" 115 A Physical Experience 118 Narratives about Primarily Physical and Objectless Symptoms 122 Causal Ordering of the Anxiety Experience 127 Anxiety Mistaken for Physical Illness 129 Anxiety Mistaken for Insanity 132 Conclusion 135 GENDERED EXPRESSIONS AND EXPERIENCES OF ANXIETY 138 Fear: Gendered Female 139 Differential Illness Experiences by Gender 143 The Gendered Expression and Experience of Anxiety 145 Expressing Anxiety 148 Feeling Anxious 158 Conclusion 164 ANXIETY DISORDERS AS GENDERED DIAGNOSES 168 The Pathological Woman and Comorbidity 172 Mis-Diagnosing Men 178 Conclusion 186 AFTER DIAGNOSIS: BECOMING "IRRATIONAL" 189 Labeling Theory 192 Diagnosis: Secures Thoughts, Feelings, and Behaviors as "Irrational" 197 Diagnosis Distrust: Losing Faith in an Ability to Correctly Perceive the World 205 Diagnosis Everything: The Slow Creep of Disorder 213 Responses to "Real Problems" become "Disorder" 216 Mild Distress becomes Disordered 219 vii Conclusion 221 THE BODY-CATEGORY DIALECTIC 226 Diagnosis: Silencing, Ordering, and Managing Bodies 229 After Diagnosis: Encompassing more and more Physical Sensation 233 After Diagnosis: Blurred boundaries 243 Conclusion 247 CONCLUSION 250 Social Materiality: Objects and Bodies 251 Diagnosis and the Micro-Processes of Medicalization 255 Studying the Life Course of Chronic Illness 258 APPENDICES 261 Appendix A: Scholarly Coverage of Anxiety Disorders 261 Appendix B. Historical Development of Medical Diagnoses 263 Appendix C. DSM Diagnostic Criteria 265 Appendix D: Interviewee Characteristics 270 Appendix E. IRB Approval 275 REFERENCES 276 viii LIST OF TABLES Table 1. DSM-IV criteria for anxiety disorders addressed in this dissertation* 265 Table 2. DSM-IV - non-codable disorders associated with anxiety disorders* 269 Table 3. Interviewee demographics and diagnoses 270 Table 4. Interviewee diagnosis timeline 272 Table 5. Summary statistics of interviewee characteristics 274 LIST OF FIGURES Figure 1. Time elapsed between onset and diagnosis by age of the respondent 53 ix ABSTRACT ANXIOUS LIVES: TRACING THE LIFE COURSE OF A MEDICAL DIAGNOSIS THROUGH ILLNESS NARRATIVES by Jennifer J. Esala University of New Hampshire, May 2012 This dissertation is a study of medical diagnosis, specifically anxiety disorder diagnosis, from the perspective and through the narratives of people who have been diagnosed. In this study, I address two core research questions. First, how does social materiality (e.g., bodies and objects) contribute to, shape, and lend empirical understanding to the experience of an anxiety disorder and the experience of illness in general? Second, how does medical diagnosis translate from the medical institution into the lives of people who have been diagnosed, and how do those diagnoses transform in and through the social lives of people? To address these questions, I conducted in-depth interviews with forty people who had been diagnosed with three specific forms of an anxiety