“I am just a shadow of who I used to be” – exploring existential loss of identity among people living with chronic conditions of Long COVID

Chao Fang, Sarah Baz, Laura Sheard, JD Carpentieri

Research output: Contribution to journalArticlepeer-review

12 Citations (SciVal)

Abstract

Identity loss and (re)construction forms a central debate in sociology of chronic illness. Living with chronic/persistent health conditions may raise questions about how disruptions can touch upon and further threaten the very roots of existence, by which people reflexively perceive a coherent and stable sense of ‘being-in-the-world’. Whilst medical sociologists have shown interest in ‘existential loss’ in chronic illness, this question remains largely underexplored. Adopting a qualitative study on Long COVID (LC) as an example, this article illuminates existential identity loss as a deeply painful experience of losing body as a fundamental medium to retain continuity and consistency of one’s narratively constructed identity. Interviews with 80 LC sufferers in the UK revealed that living with persistent and often uncertain symptoms and disruptions can cause the loss of biographical resources and resilience, making it difficult to reflexively understand their own being within the world. Their dynamic responses to LC also highlighted how sufferers’ longing for a narratively coherent self can profoundly shape the ongoing construction of their identity in chronic health conditions. These insights into the complicated and often hard-to-express existential pain of identity loss can also nurture more holistic understandings of and support for LC and chronic illness more broadly.
Original languageEnglish
JournalSociology of Health and Illness
DOIs
Publication statusPublished - 1 Jul 2023

Bibliographical note

DATA AVAILABILITY STATEMENT
The data that support the findings of this study are available on request from the corresponding author. The data will be submitted to the UK Data Service following the completion of the CONVALESCENCE study.

Professor Nishi Chaturvedi who is the Principal Investigator of the broader CONVALESCENCE Long COVID study. Characterisation, determinants, mechanisms and consequences of the long-term effects of COVID-19: Providing the evidence base for health-care services (CONVALESCENCE) was funded by NIHR (COV-LT-0009). T

Funding

We would like to acknowledge the following people and organisations for their kind support of this project: (1) the 80 participants who kindly shared their thoughts, feelings and experiences with us, (2) the Centre for Longitudinal Studies at University College London (who manage the five UK national cohort studies), (3) the Born in Bradford Cohort Study maintenance team and researchers at the Bradford Institute for Health Research who supported the study and recruitment process in Bradford and (4) Professor Nishi Chaturvedi who is the Principal Investigator of the broader CONVALESCENCE Long COVID study. Characterisation, determinants, mechanisms and consequences of the long‐term effects of COVID‐19: Providing the evidence base for health‐care services (CONVALESCENCE) was funded by NIHR (COV‐LT‐0009). This research team is working on the qualitative component of the work package, a qualitative longitudinal study.

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