‘Suck it up, keep going’? A critical disabilities analysis with strategic recommendations for supporting the wellbeing among people living with long COVID

Long COVID has been described as a ‘mass disabling event’, affecting over 400 million people worldwide. In the context of evolving medical knowledge around this novel condition, there is little research on how the broader determinants of health might interact with symptoms to influence the lived experience of people with Long COVID. This paper contributes a critical disability studies perspective to explore the structural determinants of well-being for people with Long COVID. Drawing on interviews with 30 people with Long COVID and eight caregivers, we conducted a qualitative study (March-July 2023), applying reflexive thematic analysis to identify themes related to cultural norms/values and public policies. The results illustrate how social understanding of disability contributes to feelings of poor self-worth, increased isolation, and decreased motivation to access disability support. Disability support and return-to-work programs depict the dominant influence of ableist policies and their negative impact on people with Long COVID’s wellbeing. In particular, respondents described how gaslighting occurs within social policy and work, as well as medical and environmental factors. Multilevel interventions are needed to strengthen health and social policies, engage patients and caregivers, and address health and social disparities associated with Long COVID.