Medical ambivalence and Long Covid: the disconnects, entanglements, and productivities shaping ethnic minority experiences in the UK

Abstract

Structural violence - related to ‘isms’ like racism, sexism, and ableism – pertains to the ways in which social institutions harm certain groups. Such violence is critical to institutional indifference to the plight of ethnic minority people living with long-term health conditions. With only emergent literature on the lived experiences of ethnic minorities with Long Covid, we sought to investigate experiences around the interplay of illness and structural vulnerabilities. Thirty-one semi-structured interviews with a range of UK-based participants of varying ethnic minorities, ages and socio-economic situations were undertaken online between June 2022 and June 2023. A constant comparison analysis was used to develop three over-arching themes: (1) Long Covid and social recognition; (2) The violence of medical ambivalence; and (3) Pathways to recognition and support. Findings showed that while professional recognition and support were possible, participants generally faced the spectre and deployment of a particular mode of structural violence, namely ‘medical ambivalence’. The contours of medical ambivalence in the National Health Service (NHS) as an institution had consequences, including inducing or accentuating suffering via practices of care denial. Despite multiple structurally shaped ordeals (like healthcare, community stigma, and sexism), many participants were nevertheless able to gain recognition for their condition (e.g. online, religious communities). Participants with more resources were in the best position to ‘cobble together’ their own approaches to care and support, despite structural headwinds.

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ORCID for Nisreen A. Alwan: orcid.org/0000-0002-4134-8463

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