‘But you don’t look sick’: a qualitative analysis of the LUPUS UK online forum

Sloan, Melanie, Bosley, Michael, Blane, Moira, Holloway, Lynn, Barrere, Colette, D’Cruz, David, Walia, Chanpreet, Naughton, Felix, Howard, Paul, Sutton, Stephen and Gordon, Caroline (2021) ‘But you don’t look sick’: a qualitative analysis of the LUPUS UK online forum. Rheumatology International, 41 (4). pp. 721-732. ISSN 0172-8172

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Lupus is a multi-system autoimmune rheumatic disease with increased morbidity and mortality. Some manifestations are life-threatening with many aspects of living with the disease, difficulties in diagnosis and accessing appropriate medical care, having an impact on quality of life. The disease itself, and these patients’ perspectives, are currently poorly understood and under-researched. The LUPUS UK forum of conversations between over 25,000 members provides a rich environment to explore the views of these patients. Conversations on the LUPUS UK online forum were qualitatively explored using virtual ethnography and thematic analysis. The forum itself and positive medical relationships were widely considered to provide a means of support, understanding and validation. Forum members expressed difficulties in diagnosis, disease management, and the psychological and physical impact of living with an unpredictable, poorly understood disease, often with life-changing symptoms. Invalidating personal, social and medical environments were perceived as exacerbating these difficulties. Delays in diagnosis and misdiagnoses were frequently discussed as causing significant damage, especially when symptoms were disbelieved or dismissed. Invalidation was the key theme with further themes of: Uncertainty, Medical (mis)communications and misunderstandings, Navigating health systems and Resilience and support. Although effective care and support was reported by some members, the negative impact of living with an incurable, life-changing disease was often exacerbated by perceived invalidation, uncertainty, and difficulties in multiple areas of members’ lives. Improved knowledge of the disease and greater support at all stages of the diagnostic journey could improve outcomes and quality of life for these patients.

Item Type: Article
Uncontrolled Keywords: holistic care,lupus,misdiagnosis,patient views,patient–physician interaction,quality of life,rheumatology,immunology and allergy,immunology ,/dk/atira/pure/subjectarea/asjc/2700/2745
Faculty \ School: Faculty of Medicine and Health Sciences > School of Health Sciences
UEA Research Groups: Faculty of Medicine and Health Sciences > Research Centres > Norwich Institute for Healthy Aging
Faculty of Medicine and Health Sciences > Research Groups > Behavioural and Implementation Science
Faculty of Medicine and Health Sciences > Research Groups > Health Promotion
Faculty of Medicine and Health Sciences > Research Centres > Lifespan Health
Related URLs:
Depositing User: LivePure Connector
Date Deposited: 29 Oct 2020 01:03
Last Modified: 19 Oct 2023 02:49
URI: https://ueaeprints.uea.ac.uk/id/eprint/77463
DOI: 10.1007/s00296-020-04726-x

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