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‘You’re just a Guinea pig’: Exploring the barriers and impacts of living with long COVID‐19: A view from the undiagnosed

Mullard, Jordan; Mir, Ghazala; Herbert, Chantal; Evans, Sophie

‘You’re just a Guinea pig’: Exploring the barriers and impacts of living with long COVID‐19: A view from the undiagnosed Thumbnail


Authors

Ghazala Mir

Chantal Herbert

Sophie Evans



Abstract

The COVID‐19 pandemic had a disproportionate impact on ethnically minoritised and other marginalised communities, yet little is known about the impacts of long COVID‐19 (LC) on this group. Living with LC takes its toll both physically, emotionally and financially and even more so when a diagnosis is hard to come by. By using qualitative interviews centring the view of undiagnosed and marginalised communities already classed as ‘underserved’ in the medical literature, we show the range of barriers and impacts faced by these groups in the UK, and the strategies of resilience they use. Whether trapped on a ‘diagnostic odyssey’ at the level of primary care, struggling to maintain employment and businesses, or managing family commitments, we argue many minoritised communities are caught in a liminal space of misrecognition, invalidation and ambiguity. We show how these impacts are generated by tensions and challenges in the process and categorisation of diagnosis, and how this effects the daily lives of many individuals already on the receiving end of health inequity. We also offer some examples and suggestions for best practices.

Citation

Mullard, J., Mir, G., Herbert, C., & Evans, S. (2024). ‘You’re just a Guinea pig’: Exploring the barriers and impacts of living with long COVID‐19: A view from the undiagnosed. Sociology of Health & Illness, https://doi.org/10.1111/1467-9566.13795

Journal Article Type Article
Acceptance Date May 15, 2024
Online Publication Date Jun 8, 2024
Publication Date Jun 8, 2024
Deposit Date Jun 19, 2024
Publicly Available Date Jun 19, 2024
Journal Sociology of Health & Illness
Print ISSN 0141-9889
Publisher Wiley
Peer Reviewed Peer Reviewed
DOI https://doi.org/10.1111/1467-9566.13795
Keywords long COVID‐19, invalidation, recognition, marginalised communities, diagnostic odyssey, emotional labour, health inequalities
Public URL https://durham-repository.worktribe.com/output/2484171