Fang, Chao; Baz, Sarah; Sheard, Laura; Carpentieri, Jon; (2023) An exploration of loss and identity among people living with Long COVID. UCL: London, UK.

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Abstract

Identity loss and (re)construction forms a central debate in sociology of chronic illness. People living with chronic/persistent health conditions are often faced with both a ‘broken’ body and a disrupted self-narrative. The loss of the coherence of ongoing life and identity also lies at the heart of the lived experiences of people living with Long COVID (LC). Drawing upon a qualitative study of 80 people with self-identified LC symptoms in the UK, this paper unveils an insightful picture of how our participants lost and also sought to restore their identity as a multi-dimensional, narratively constructed and embodied entity. We found that, as a complex and still largely underexplored health condition, LC could lead to the compounded loss of not only the physical self but also a profound sense of meaning and self-worth. As reported by our participants, identity loss around LC may arise from ongoing bodily disruptions to daily routines and the lack of support and understanding to legitimise their suffering. They often experienced LC as suppressing and existential loss of meaning and being. Their dynamic responses to LC also highlighted how their longing for a narratively coherent self profoundly shaped the ongoing construction of their identity.

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