The newly-developed Traumatic Chronic Illness Survival model leans away from traditional ‘transformation’ narratives, illustrating the complex experiences of chronic illness.
28 July 2025
By Emily Reynolds
Inflammatory bowel disease (IBD) is a chronic condition affecting millions of people worldwide, including over half a million in the UK. While, as the name implies, it primarily affects the gut, its impact reaches far beyond the digestive system. Growing evidence shows that IBD can be traumatic, impacting the identity, wellbeing, and everyday life of those with the condition.
Writing in the British Journal of Health Psychology, the University of Nottingham's Rachel Murphy and Belinda Harris look at the experiences of women living with IBD, looking closely at the impact of the condition on their sense of self. They develop a new model of the psychological impacts of chronic, fluctuating illnesses that, rather than focusing on a linear journey of 'growth' due to illness (as previous models have tended to do), attempts to more fully acknowledge the "multitude of ways people survive in the face of such devastating conditions."
The study used an Interpretive Phenomenological Approach (IPA) to explore the experiences of women in the UK diagnosed with IBD. Semi-structured interviews were conducted with 21 women with a diagnosis of IBD, using flexible questions to encourage deep reflection on identity, gender, healthcare, and emotion. From here, the team pulled out four themes: 'wearing the straitjacket of illness', 'psychologically difficult emotions', 'flexibility of self', and 'navigating a way through'.
Firstly, participants described living with IBD as wearing a metaphorical straitjacket: a constraint that tightened or loosened depending on the severity of symptoms. Trauma was compounded by ongoing physical limitations, feelings of difference, and societal misunderstanding, and the participants reported a profound sense of loss, isolation, and shame in relation to stigmatised symptoms, such as incontinence, fatigue, and the presence of a stoma. These challenges continually affected their sense of identity, sexuality, and ability to be spontaneous.
The next theme looked at psychologically difficult emotions, many of which mirrored the symptoms of post-traumatic stress: denial, defensiveness, and emotional concealment, leading to a painful sense of disconnection between how they felt and how they presented to the world. Several core emotions emerged: shame, despair, self-doubt, and anger. Shame was the most pervasive, while anger, though not often openly expressed, surfaced as frustration over a loss of identity and control.
Next, participants highlighted the importance of developing a flexible sense of self: not always easy to achieve, but possible through drawing on existing traits and developing coping mechanisms over time. Here, resilience was not about thriving, but surviving: pragmatically adjusting to their new normal and learning to accept unpredictability. Acceptance of IBD as part of one's identity, rather than something separate or shameful, also emerged as a cornerstone of wellbeing.
Finally, some found ways to navigate life with IBD by embracing creativity and self-care. This looked like reframing illness, developing routines to avoid flare-ups, and finding pride in things which assist them on their health journeys, such as stoma bags. However, this wasn't universal — only half of participants saw change in this area across their journey with the illness. Others saw less change, and continued to struggle with comparison, guilt, unmanaged symptoms, and a profound lack of psychological support. This left some feeling stuck.
Drawing on their findings, the authors critique traditional healthcare models for failing to capture the complex, ongoing, bodily trauma experienced by women with IBD. Instead, they propose a more nuanced framework: Traumatic Chronic Illness Survival (TCIS), which better captures the layered, often traumatic realities of living with the condition..
In order for clinicians and allies to provide true support, the team argues, our ideas about living with IBD need to recognise the complexity of the experience, and reject more simplistic or linear expectations of growth and transformation. As such, TCIS centres survival, not transformation, as the primary achievement in chronic illness, and reflects the toll taken by the recurring nature of illness-related trauma. As the team writes, TCIS does not align "with the view that suffering is a necessary path to growth; pain and anguish are the unfortunate effects of a devastating illness."
The team hopes that this work will help clinicians and allies see survival itself as an end of its own, meeting those with IBD (and indeed other chronic, fluctuating illnesses) with compassion, flexibility, and care, with no expectations of what 'recovery' looks like or what psychological experiences might emerge from someone's pain.
Read the paper in full:
Murphy, R., & Harris, B. (2025). Can current post‐traumatic growth models capture the lived experience of life with a fluctuating chronic illness? Towards a new model. British Journal of Health Psychology, 30(3). https://doi.org/10.1111/bjhp.70003
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