Support Often Outweighs Stigma for People With Inflammatory Bowel Disease

Abstract

Inflammatory bowel disease is associated with many embarrassing symptoms: frequent, urgent, or bloody diarrhea; weight loss from malnutrition or weight gain from adverse effects of medicine; abdominal cramping and bloating; and occasionally incontinence. The course of the disease is often unpredictable, as the disease fluctuates between remission and flare-up. Because of the embarrassing nature and the unpredictability of the disease, many people feel stigmatized or perceive that they will be stigmatized because of their disease. For this study, 14 people with inflammatory bowel disease were interviewed about their experiences disclosing their disease to others. Although everyone perceived at some point that their disease would be stigmatizing, participants for the most part had very positive experiences once they shared their disease with others. Support and stigma are examined during initial diagnosis of the disease, romantic relationships, work and school, surgery, and medicine. Interviews were examined not only for common themes but also for overt situations of stigma, which were few in occurrence, but often had a strong impact on the person's life. Discussed are the implications of this discrepancy: people's perceptions of stigma do not always conform to their experience of stigma.