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

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.

Support amid uncertainty: Long COVID illness experiences and the role of online communities.

Long COVID is characterized by persistent and debilitating long-term symptoms from COVID-19. Many persons with Long COVID began gathering in online communities during the early phases of the pandemic to share their illness experiences. This qualitative interview study explored the subjective experiences of 20 persons with Long COVID recruited from five online communities. Their understandings of illness and associated implications for social relationships with family and friends, healthcare professionals, and online community members were explored. Three themes were identified from our analysis, including (1) complex and unpredictable illness experienced amid an evolving understanding of the pandemic; (2) frustration, dismissal, and gaslighting in healthcare interactions; and (3) validation and support from online communities. These findings highlight the significant uncertainty that persons with Long COVID navigated, the features of their often dismaying healthcare experiences, and the ways in which online communities aided them in understanding their illness.