The impact of chronic disease goes far beyond physical symptoms, resulting in individuals unable to work, becoming socially isolated, and feeling overwhelmed by emotional turmoil. Inflammatory Bowel Disease (IBD) is one such chronic illness that encompasses the conditions Ulcerative Colitis and Crohn’s Disease, which are characterised by inflammation of the gastrointestinal tract. IBD’s have no cure and require life-long self-management.

IBD self-management tends to focus on behavioural strategies such as medication adherence and dietary changes. Whilst behavioural strategies are important, they do little to address the social and psychological impacts of chronic illness. For example, dietary changes don’t help reduce social isolation, in fact it may be a contributing factor as activities such as eating out becomes more difficult. Although medication adherence reduces symptoms, it can increase psychological stress, particularly as some IBD treatment is invasive and distressing. Emerging evidence highlights the important role that psychosocial factors play in managing IBD and the often-overlooked lived experiences of such chronic diseases. Our sense of self is one such factor.

Our identity guides our perceptions and behaviours and influences health related behaviours and outcomes. Emerging research has found that the more an individual accepts a chronic illness into their identity, the better their health outcomes. This reflects my own experience living with Crohn’s Disease, a long-term condition where the gut becomes inflamed. When in remission with reduced symptom severity, I would deny I was even ill. Yet, as soon as I stopped my medication, my condition would flare. I decided to explore this relationship through my research and discovered I was not alone.

I found a significant relationship between self-management and illness identity, even after accounting for factors such as symptom severity, illness duration and comorbidities. The more people accepted IBD as part of their sense of self, the better they self-managed their illness. The findings revealed that acceptance broadened self-management strategies from purely behavioural to include psychological strategies such as self-awareness and self-compassion. The knock-on effects of this included improved mental health and quality of life.

My research not only provided a new insight into IBD self-management but also into my own experiences and realising that my rejection of IBD was a normal response to being diagnosed with a chronic disease. As I write this six years later, I have moved towards acceptance, but the process is non-linear. This is unsurprising given the complexity and fluctuating nature of both chronic disease and identity.

Nevertheless, the study provides initial evidence that illness identity appears to be an influential self-management process for IBD. Psychosocial interventions such as peer support groups present a promising approach to facilitating illness identity acceptance, yet access to such interventions remains inconsistent.

The lessons I have learnt from living with a chronic disease and researching within IBD is that there is a community of people out there with shared lived experiences and can support our journey to acceptance. I would like to acknowledge the charities Crohn’s and Colitis UK and Get Your Belly Out for their support of the research, alongside the many IBD advocates, ambassadors, bloggers, and of course the research participants.

Dr Louisa Peters is a Lecturer in Psychology at Leeds Trinity University.

This blog post is based off the article:

Peters, L. A., & Brown, E. M. (2022). The relationship between illness identity and the self‐management of Inflammatory Bowel Disease. British Journal of Health Psychology, 27(3), 956–970. https://doi.org/10.1111/bjhp.12584