Talking about an invisible illness: the experience of young people suffering from inflammatory bowel disease (IBD)

Inflammatory Bowel Disease (IBD) is a chronic condition caused by immune disregulation resulting in chronic inflammation of the gastrointestinal tract. Common symptoms include frequent diarrhoea, abdominal pain, poor appetite, rectal bleeding, vomiting, fatigue, weight loss and growth delay in children. Limited research has explored young people’s experiences of talking about their chronic illnesses, particularly illnesses like IBD where the condition for the most part is not visible to others.
This study utilises interpretative phenomenological analysis (IPA) to reflect on the experiences of seven adolescents’ disclosure of IBD at school, following the transition from primary to secondary school. Internalised social discourses around the unacceptability of talking about IBD’s symptoms, namely diarrhoea, meant that IBD was experienced and managed by the young people as a stigmatised identity. Disclosure was experienced as a risky but potentially rewarding experience, with participants weighing-up potential rewards against anticipated costs. Psychological benefits included: talking to address the need for their post-illness selves to be known by both themselves and others, and to belong. Psychological costs noted included: not talking to maintain their privacy and a sense of control over their lives and illnesses, and to avoid disabling attitudes and responses from peers and teachers. A reciprocal relationship between self-discovery and disclosure of IBD was noted, whereby disclosure seemed to simultaneously be affected and effect acceptance of IBD, with many reporting a tension between acknowledging the reality of their illness and not wanting IBD to be the all defining part of their identity. Disclosure was also described by some as a potentially retriggering the sense of trauma experienced around the time of diagnosis.
The study’s findings call for services and professionals in all settings (medical and school settings) to consider disclosure of IBD more holistictically as an on-going process, one requiring young people to regularly adapt in the face of new challenges, and to adapt their services and practices accordingly.