Revealing and Concealing Ill Identity: A Performance Narrative of IBD Disclosure

Abstract

Revealing a hidden, chronic illness is a risky and vulnerable act. Ill individuals often remain socially stigmatized, and those who live with invisible illness must legitimize their ill identity since they infrequently look sick. For individuals with inflammatory bowel disease (IBD), disclosing one's illness carries unique challenges because of the grotesque and taboo nature of the disease. To this end, the bathroom or "water closet" is more than a functional place-it is a space to hide one's ill identity. For many, the point of departure from safety to vulnerability occurs when there is a desire to disclose. In this descriptive essay, revelation of an invisible illness, IBD, and disclosure to others are explored as embodied and situated communication. Through performance narrative, the author shares stories of her disclosive moments to inform others about IBD, explores how the water closet can be a metaphoric boundary, examines various strategies used in revealing hidden illness, and offers possible implications for IBD disclosure to the self and relationships with others.

Exploring self-control of workers with a chronic condition: a qualitative synthesis

“…Condition invisibility and possible stigmatization further complicate the dilemma to disclose or not to disclose as shown by the theoretical framework developed by Joachim and Acorn (2001). This framework shows that workers with invisible conditions have several options (e.g., non-disclosure, preventive disclosure and protective or spontaneous disclosure) when dealing with their condition, compared to workers with visible conditions (Defenbaugh, 2013;Joachim & Acorn, 2001;Vickers, 1997), thereby making their decision to disclose more difficult.…”

Trying to Be Perfect in an Imperfect World: Examining the Role of Perfectionism in the Context of Chronic Illness

“…Thus, perfectionism may be especially detrimental for individuals with stigmatized yet hidden chronic illnesses, such as IBD, in part, because self-disclosure can be a risky and vulnerable act with negative consequences which may reinforce concealment (Defenbaugh, 2012). This is a serious issue in light of evidence suggesting that individuals with chronic illness who believe that their social networks are unreceptive as opposed to receptive are more likely to experience poorer adjustment (Danoff-Burg, Revenson, Trudeau, & Paget, 2004;Manne & Badr, 2008).…”

Depression, anxiety, and loneliness among adolescents and young adults with IBD in the UK: the role of disease severity, age of onset, and embarrassment of the condition

“…Individuals with IBD experience potential challenges to their psychological well-being: the course of the disease is unpredictable, the treatment and management regimes frustrating. Patients talk about the symptoms of the disease often being embarrassing and socially limiting [3,11], which makes telling others about their condition difficult [12,13]. While there are few studies with adolescents and young adults (AYA) with IBD, those studies show high rates of anxiety and depression among that population [14].…”

“…Given that those with IBD also report social problems more frequently than healthy peers [23], it is possible that problems with social relationships are key predictors of mental health problems among AYA with IBD. There is a social taboo related to bowel symptoms in most cultures, so IBD is susceptible to condition-related stigma [26], which means those with IBD report high levels of shame/embarrassment associated with having the condition [11,27]. Fears of abdominal pain, bowel noises, faecal incontinence, and/or a bowel urgency in public mean many people with IBD withdraw from social interactions because they feel ashamed.…”