Abstract

Few studies have investigated emotional experiences in people living with inflammatory bowel disease (IBD). However, self-conscious emotions, including embarrassment and shame, are indicated as a key factor in delayed help-seeking for bowel symptoms, which can result in poorer health outcomes. This study aimed to explore experiences of self-conscious emotions among people with IBD. Fifteen participants were recruited from outpatient IBD clinics and patient groups, and engaged in semi-structured interviews about their experiences of IBD-related self-consciousness. Data were analysed using thematic analysis following an inductive, semantic approach and conducted from a critical realist position. The analysis generated two themes, each with three sub-themes, which captured self-conscious emotions in relation to experiences which threatened participants’ preferred identities. The first theme, ‘Lack of control’ encapsulated participants’ distress relating to fundamental alteration in self-perception, and their attempts to mitigate this. The second, ‘Lack of understanding’ captured distress associated with awareness of being unfairly judged by other people. Clinical implications are identified, including consideration of therapeutic approaches which target self-conscious emotions such as shame, and continued societal efforts to educate others about invisible disabilities such as IBD. Experiences which threatened participants’ identities were implicated in the generation of self-conscious emotions; these should be considered in work with clients with IBD. Future research should target further investigation of these constructs.

Highlights

  • Inflammatory bowel disease (IBD) describes chronic gastrointestinal conditions, most commonly ulcerative colitis (UC) and Crohn’s disease (CD)

  • We explore the role of self-conscious emotions in mental wellbeing in people with IBD, which have been little-studied

  • Many participants reported that living with IBD had become easier over time, all spoke about times when IBD had caused significant difficulties and intense distress

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Summary

Introduction

Inflammatory bowel disease (IBD) describes chronic gastrointestinal conditions, most commonly ulcerative colitis (UC) and Crohn’s disease (CD). Both can cause diarrhoea, pain, weight loss and fatigue, linked to inflammation and ulceration within sections of the digestive system (Crohn’s & Colitis UK [CCUK], 2014), as well as extra-intestinal manifestations such as skin rashes and joint or eye inflammation (CCUK, 2014). As for many other chronic conditions, growing evidence recognises both biological (immunological and genetic) and psychological predispositions in IBD (Bitton et al, 2008; Mackner et al, 2011; Mawdsley & Rampton, 2005). We explore the role of self-conscious emotions in mental wellbeing in people with IBD, which have been little-studied

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