Construction of identity in individuals with inflammatory bowel disease across the lifespan

Inflammatory bowel disease (IBD) is a chronic illness that affects 10 million individuals worldwide; however, Canada has the highest rates of IBD per capita in the world. Presently, 0.7% of Canadians are diagnosed with IBD, which is expected to rise to 1% by 2030. Disease onset is typically between the ages of 15-45 years old. This is a crucial period for identity development and growth; however, IBD symptoms often disrupt these processes and cause individuals to abandon or reconstruct parts of their identity. As a result, changes in individuals' life plans and health status may cause them to grieve their former pre-IBD identities. In this qualitative narrative study, we captured the lived experiences of IBD, with a focus on what individuals have lost, gained, or accomplished across various avenues (e.g. relationships, education, and future scripts). Thirteen participants constructed IBD narratives using a holistic-form narrative approach, a method that captures various plot formulations and discourses that emerge through storytelling. We found three main plotlines: The 'journey to acceptance', which detailed a route to acceptance wherein individuals integrated IBD into their identity, 'the ambivalent story', which exemplified individuals who were unsure of IBD and the resulting impacts of the diagnosis on their identity, and 'the grief story', which outlined grief and loss surrounding one's pre-IBD self. These results illuminate the role of narrative in shaping meaning-making and identity processes over the life course. We urge future researchers to explore narrative inquiry as a route to further understand the integration of IBD into one's life story/identity.