You poor thing: A retrospective autoethnography of visible chronic illness as a symbolic vanishing act

Abstract

In this autoethnography, I outline a framework for understanding illness as deviance, contextualizing general sociological theory on sick role dynamics to the specific case of chronic conditions that manifest with visible physical differences. I demonstrate two distinct ways in which chronic conditions can foster labeling and stigma. First, I explore how social norms can result in sanctions for showing physical evidence of chronic conditions. I describe sanctions I have experienced for violating conventional ideas about youth and female beauty, and associated behavioral expectations. Second, I explore how double jeopardy can result from failing to meet usual social expectations for sickness. I describe sanctions I have experienced for violating ideas of what abilities a person with a chronic illness should possess, and how they should behave in relation. I conclude by illuminating how normative social discourse can simultaneously sensationalize and efface people with visible chronic diseases.