Everyone poops but no one wants to talk about it: The lived experiences of young people with Inflammatory Bowel Disease.

摘要

Crohn's disease and Colitis, the two most common Inflammatory Bowel Diseases (IBD), are on the rise among young people. IBD symptoms include severe abdominal pain and frequent bowel movements, which can result in major dietary restrictions and delays in growth. IBD can also limit people's physical activity, eating habits, and activities that are distant from a bathroom. Having IBD can be both limiting and embarrassing but little research has investigated the social and emotional implications of these diseases from a qualitative approach. Existing research fails to identify how stigma and dominant IBD discourses affect the lived experiences of people with IBD, young people in particular. IBD can create additional challenges for adolescents because it is perceived to threaten their normal development into healthy adults. The purpose of this project is to investigate how being young complicates the already difficult experience of being ill.;I conducted interviews with three young people and a discursive analysis of official IBD resources for adolescents and found almost no descriptions of the actual experience of illness. Participants who engaged in photo-elicited interviews minimized the physical and emotional repercussions of having IBD. Informational resources designed for youth failed to address the severe physical and emotional pain of Crohn's and Colitis. Instead, the available resources provided saccharine and arguably unrealistic depictions of IBD that deny young people a forum to express their own struggles. I compare my analysis of the interviews and IBD resources with my own experience and experiences presented in a zine. Analysis of both the interviews and the IBD resources reveals that young people with IBD can experience an embodied disappearance. Their bodies are smaller and weak, they retreat from social situations to avoid embarrassment, and their emotions are denied because they have no forums to be expressive. Finally, young people can experience a compounded disappearance because they are treated not for who they are but for what they should become. I argue that enabling young people the opportunity to speak candidly about the social conditions that contribute to their struggles could help them better understand, negotiate, and express their illness experiences.