Getting back to normal? Identity and role disruptions among adults with Long COVID

Sociol Health Illn. 2023 May;45(4):914-934. doi: 10.1111/1467-9566.13628. Epub 2023 Mar 7.


Long COVID is a novel chronic illness with a variety of symptoms that people who have labelled themselves 'long-haulers' experience for an extended duration following a COVID-19 infection. We draw on in-depth interviews conducted in March-April 2021 with 20 working-aged adults in the U.S. who self-identified as long-haulers to understand the consequences for identities. The results demonstrate that Long COVID has important consequences for identities and sense of self. Long-haulers described experiencing three stages of biographical disruptions: realising their illness experience as misaligned with sense of self and embodied, age-based expectations; facing challenges to identities and changes in social roles; and reconciling illness and identity in the context of an uncertain prognosis. It remains unclear how long-haulers will resolve biographical disruptions and identity conflicts, especially as scientific insights about this novel condition emerge. Such outcomes may depend largely on whether Long COVID remains a contested illness or medical knowledge progresses to improve their quality of life. For now, healthcare providers may approach Long COVID holistically to address the identity disruptions that long-haulers face as they manage the consequences of this chronic illness.

Keywords: biographical disruption; chronic illness; contested conditions; identity; illness experience; support groups.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adult
  • COVID-19*
  • Chronic Disease
  • Humans
  • Middle Aged
  • Post-Acute COVID-19 Syndrome*
  • Quality of Life
  • Uncertainty