Too shamed to tell: the impact of shame on illness disclosure in women living with inflammatory bowel disease

Abstract

Background: Living with an invisible disease of the bowel, such as inflammatory bowel disease (IBD), can evoke the psychologically difficult emotion of shame, which can in turn impact illness disclosure decisions. Aim: This Interpretative Phenomenological Analysis (IPA) study explored the link between shame and illness disclosure decisions. Findings: All 16 female participants experienced psychologically difficult emotions, with shame being predominant. This shame originated in the social stigma surrounding the specific nature of an illness of the bowel. Additionally, participants expressed their complex relationship with illness disclosure, which highlighted the influencing factor of shame. Methods: This IPA study was conducted under a humanistic, feminist theoretical framework and from a social constructivist standpoint. Conclusion: The experience of shame by women with IBD heavily influences their illness disclosure choices. The question that now requires exploration is how shame impacts illness disclosure in healthcare settings.