for awarding me two years as a pre-doctoral scholar. My position allowed me ample time to write and provided wonderful, supportive colleagues. I especially want to thank Rebecca Bordt, Angela Castaneda, and Nancy Davis for enriching my...
morefor awarding me two years as a pre-doctoral scholar. My position allowed me ample time to write and provided wonderful, supportive colleagues. I especially want to thank Rebecca Bordt, Angela Castaneda, and Nancy Davis for enriching my time at DePauw. The Sociology Department at Indiana University also provided financial assistance through the Stuart Simon Fellowship. There are numerous professors who deserv e accolades . First, I credit Katherine Rossier with sparking my interest in sociology when I was an undergraduate at Louisiana State University. I am forever indebted to Bernice Pescosolido and Brian Powell, who co-chaired not only my master's thesis but my dissertation. Bernices' expertise in medical sociology was invaluable for this project as was her support. The emotion work alone by Brian deserves unending praise, not to mention the detailed comments on drafts of chapters. Thank you for believing in me. My other committee members, Elizabeth Armstrong and Stephanie Kane were especially vital with the theoretical and methodological development of the dissertation. I am grateful to my undergraduate research assistants, Stephanie Cecil, Meghan Meyers, Colleen Reilly, Tiffany Stephens, Valarie Taulman, and Sara Wright. Their hard work allowed me to analyze the data much sooner than if I would have been working alone. I must mention my dear colleagues Janice McCabe, Jenny Stuber, and Karen v Kaiser. Thank you for all of your help, support, and kindness over the years. I could not have done this without y'all. Lastly, none of this would be possible without the love, support, and encouragement of my family. Mom, thank you for encouraging my love of reading as a child. I also need to thank my Mom, Dennis, and Patience for housing me (and Bruno) during data collection in Louisiana. My interest in health and medicine was influenced by my father and my research in Louisiana was also facilitated by him. My sister was always there to listen when I struggled. Of course, there is no way I could have done this without the love and very real, daily support of my wonderful partner, Mark. Finally, thank you baby boy, Asher, your sweet smile after a day of writing made me forget all my worries. vii Conrad 1983). Research on illness experience has generally focused on subjective meanings associated with illness including notions of stigma, coping actions including patients' interactions with others, and more recently, the effects of social structure on the illness experience (Pierret 2003). The bulk of this research focuses on well known chronic illnesses (see Joachim and Acorn 2000 as an exception). Although HCV is not rare in prevalence, it is relatively unknown to the public and unexamined in medical sociology. The focus on HCV offers a unique window into lay response to illness that does not have cultural spotlight characteristics of diseases such as cancer, HIV/AIDS, and depression. In essence, I assess the efficacy of applying current understandings of chronic illness experience to an illness lacking in cultural imagery. It is unclear based on prior research whether the existing discourse on chronic illness experience is sufficient to explain the experiences of individuals living with a potentially stigmatized illness that is culturally shrouded. I specifically discuss how persons with HCV navigate their illness careers including their disclosure practices, reactions from others, and the meanings they give to their experiences. More broadly, I explore how social structure affects micro-level processes and interactions. No studies have specifically examined the effects of race, class, and gender and how these dynamics affect the experience of having HCV. Thus, this research addresses how a culturally invisible chronic illness is experienced with attention to locating individuals within the broader social structure. Chronic illness is just one major life-changing event that individuals may experience in their lifetime. The emergent research concepts apply to processes individuals undergo in an array of life-changing events. This study adds to the existing discourse on stigma and how social structure viii affects stigma. My research strengthens social psychological understandings of how issues of race and ethnicity affect meaning making processes. Thus, while my dissertation clearly speaks to the sub-areas of medical sociology and deviance, the study also contributes to knowledge about stratification, in terms of how inequality is distributed and how public discourse or lack thereof affects experiences of illness. In the following chapters, I present the existing literature regarding illness experience, my methodological approach, my analyses and conclude with final thoughts. In Chapter 1, I detail what is known regarding the illness career. I outline what is known about biographical disruption experienced with chronic illness. Chapter 1 addresses the literature about disclosure and stigmatization. The pertinence of race, class, and gender to illness experience is highlighted. I also include a discussion of what is missing in existing discourse, and how HCV can extend our current conceptualization of illness experience. In Chapter 2, I describe my methodology of in-depth interviewing. This chapter addresses experiences at the recruitment sites, the interview experience, and the respondents. I also explain my approach to data analysis including the incorporation of undergraduate research assistants and qualitative data analysis software. The chapter addresses reflexivity with regards to various aspects of the research process, ethical issues in the research, and study limitations. In Chapters 3, 4, and 5, I present analyses of the data. Each chapter incorporates data analysis and the relationship to existing theory and literature. Chapter 3 addresses issues of disclosure. Respondents offered a variety of reasons for disclosing health status and for not disclosing. The reasons were either because of a concern for others or a concern for self. People had different levels of disclosure, which are related to ix race/ethnicity as well as other factors. After the discussion of disclosure, I turn to the reactions from others in Chapter 4. People did engage in deprecatory self-labeling or felt stigma. Some respondents did report acts of enacted stigma, while others were unaware that HCV was stigmatized. Again, race/ethnicity is related to stigmatization. People also had no reactions to disclosure of their health status and positive reactions which involved various kinds of support. Respondents devised a variety of ways to cope with stigma including information control, condemning the condemners and collective action. Chapter 5 examines the diagnostic experience and respondents' reactions. People had xv Research Implications………………………………………………………………201