You Poor Thing: A Retrospective Autoethnography of Visible Chronic Illness as a Symbolic Vanishing Act

While working on an autoethnography of my psychosocial experiences surrounding drug therapy (Nowakowski, 2016, forthcoming), I included examples of how instrumental resources for illness management can become sign equipment for the social roles associated with chronic disease itself. I wrote about how even though I experience constant pain whenever I need to sit on a hard chair, I refuse to carry an orthopedic cushion because I feel it would fundamentally change the definition of my situation (Goffman, 1959) in the eyes of others by changing how they understand my circumstances and what appropriate ways to respond to those circumstances might be. If my body shows visible evidence of disease but I carry no corresponding sign equipment that tells others I am sick (Goffman, 1959), I control a portion of the narrative people formulate before getting to know me. This guidance occurs via omission rather than commission, but constitutes a form of impression management nonetheless. As I got deeper into this discussion, I quickly realized that this topic was better suited for an entirely separate autoethnography--one dealing explicitly with how representations of chronic conditions are formed, and how these representations often reproduce structural inequalities. I set about exploring in detail how others perceive me from visual information alone, and how I negotiate those perceptions as a medical sociologist with an intractable chronic disease. I began to delve into the perpetual misperception of me as a frail, ineffectual outsider to the carefree vitality of young adult life. In this paper, I examine these experiences and observations using sociological theories of identity, presentation of self, and role expectations. Background Autoethnography is the study of the self as subject through critical analysis of lived experience (Ellis et al., 2011). In the late 1980s, social scientists began embracing autoethnography as a legitimate and valuable method of empirical research (see Riley, 1988; Berger, 1990). The value of autoethnography for interdisciplinary social science stems primarily from its ability to capture unique dimensions of the social world and interactions within it (Ellis et al., 2011). For these reasons, established scholars have increasingly encouraged their junior peers to conduct reflexive qualitative inquiry in domains of experience to which they feel personally connected (Anderson, 2006). Likewise, autoethnography addresses issues of bias via explicit emphasis on standpoints. Because researchers conducting autoethnography can never fully "withdraw from inclusion" in the phenomena of interest, they must instead critically analyze the meaning and value of their insider status, as well as potential drawbacks introduced by inclusion in their own study populations. Murphy (1987) operationalized this balance between insider status and critical inquiry in research on embodied health. As a methodological approach, autoethnography indeed offers unique insights into key processes in health and well-being. Rier (2000) speaks to the importance of autoethnography as a means of incorporating diverse perspectives into research on health. Autoethnography can contribute data that would otherwise remain uncaptured because it gives voice to the experiences of patients themselves (Rier, 2000). Liggins et al. (2013) note that autoethnography also offers a means of reconciling multiple perspectives that a single individual's experiences offer if they are both a user of health services and a scholar of same. Although many early autoethnographies of health addressed acute illness experiences, scholars of health have increasingly used autoethnography to critically analyze processes and outcomes in chronic illness (Karnilowicz, 2011). As an interdisciplinary sociomedical science researcher living with persistent autoimmune disease, I count myself among their number. As a critical medical sociologist interested in the intersectionality of different social locations and how these intersections shape lived experience of chronic illness, I also acknowledge the value of autoethnography for affirming the voices of marginalized populations. …