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.
Dennis Owen Frohlich, MS, is Doctoral Candidate, College of Journalism and Communications, Division of Graduate Studies, University of Florida, Gainesville.
Correspondence to: Dennis Owen Frohlich, MS, College of Journalism and Communications, Division of Graduate Studies, University of Florida, PO Box 118400, Gainesville, FL 32611 (firstname.lastname@example.org).
The author thanks Dr. Sharon Abramowitz for her guidance and support of this project.
Although a few participants knew of the author peripherally through his work in the online inflammatory bowel disease community, the author did not have a personal relationship with any of the participants at the time of this study.
The author declares no funding or conflict of interest.
Received August 11, 2012
Accepted December 11, 2012