A Feeling of Otherness: A Qualitative Research Synthesis Exploring the Lived Experiences of Stigma in Individuals with Inflammatory Bowel Disease
Open accessAbstract
Inflammatory bowel disease (IBD) consists of Crohn’s disease and ulcerative colitis, chronic conditions involving inflammation and ulceration of the gastrointestinal tract. Individuals with IBD may be susceptible to experiencing health-related stigma: experienced, perceived, or internalised social exclusion, rejection, blame, or devaluation resulting from negative social judgements based on the disease. This qualitative research synthesis draws together findings from 38 studies describing lived experiences to develop a unified interpretative account of the experience of stigma in IBD. Analysis developed two categories: ‘The IBD journey’ explores the dynamic ways in which having IBD impacted on individuals’ self-identity and ‘a need to be understood’ examines the tension between wanting to be understood whilst feeling their true experiences needed to be hidden from or were misjudged by the social sphere. The overarching concept ‘feeling of otherness’ highlights that, rather than a static, binary experience, individuals moved across a continuum ranging from the excluding experience of feeling stigmatised and othered, to the inclusive experience of integration. Individuals fluctuated along this continuum across different physical, social, and health contexts. Psychological adjustment to IBD, drawing on experience of adaptive coping, and reconnecting with valued others through illness disclosure strengthened stigma resistance during more challenging times.
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Feelings of shame reported by participants around their IBD are consistent with previous qualitative research demonstrating that individuals with IBD often experience a 'feeling of otherness,' resulting in them feeling they must suffer in silence.
“Feelings of shame reported by participants around their IBD are consistent with previous qualitative research which demonstrates that individuals with IBD often experience a “feeling of otherness,” resulting in them feeling they must suffer in silence (Mikocka-Walus et al., 2021; Muse et al., 2021).”
From Moving Towards Acceptance and Values: A Qualitative Study of ACTforIBD Compared to IBD Psychoeducation (2024) · cites this paper as Muse et al., 2021
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“Feelings of shame reported by participants around their IBD are consistent with previous qualitative research which demonstrates that individuals with IBD often experience a “feeling of otherness,” resulting in them feeling they must suffer in silence (Mikocka-Walus et al., 2021; Muse et al., 2021).”
ResultStigmatization and resilience in inflammatory bowel disease patients at one-year follow-up
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- Authors
- Muse, K., Johnson, E., & David, A. L.
- Affiliations
- University of Worcester (GB)
- Oxford University Hospitals NHS Trust (GB)
- Corresponding author
- Muse, Kate
- Venue
- International Journal of Environmental Research and Public Health
- Publisher
- MDPI AG
- Published
- 2021-07-29
- Volume
- 18
- Issue
- 15
- Pages
- 8038
- ISSN
- 1660-4601 (ISSN-L)
- PMC
- PMC8345596
- OpenAlex
- W3184733432
- Cited by
- 48
- References
- 98
- Citations by year
- 2026: 11 · 2025: 13 · 2024: 11 · 2023: 8 · 2022: 4 · 2021: 1
- FWCI
- 0.88
- Type
- journal article
- Language
- en
- Open access
- gold
- doi.org
- Licence
- Locations
- International Journal of Environmental Research and Public Health (publishedVersion, cc-by)
- PubMed Central (publishedVersion, cc-by)
- PubMed (publishedVersion)
- Research Repository (University of Gloucestershire) (acceptedVersion)
- Worcester Research and Publications (University of Worcester) (acceptedVersion)
- RePEc: Research Papers in Economics (submittedVersion)
- DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion)
- Funders
- Crohn’s In Childhood Research Association (RP/2019/1)
- Topics
- Life Sciences › Biochemistry, Genetics and Molecular Biology › Genetics › Inflammatory Bowel Disease
- Social Sciences › Psychology › Social Psychology › Mental Health Treatment and Access
- Health Sciences › Health Professions › Pharmacy › Obesity and Health Practices
- Keywords
- inflammatory bowel disease, health stigma, lived experience, Crohn's disease, ulcerative colitis, self-identity, disclosure of illness, stigma resistance, psychological adjustment, coping, social exclusion
- MeSH terms
- Colitis, Ulcerative, Crohn Disease, Humans, Inflammatory Bowel Diseases, Qualitative Research, Social Stigma
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