“Not Having the Energy to Even Live”: A Feminist Disability Perspective on Long COVID and Caregiving

Abstract

Long COVID is defined as the persistence of symptoms three or more months after infection with severe acute respiratory syndrome Coronavirus 2 (SARS-CoV-2/COVID-19). A growing body of research documents the economic and social implications of this relatively new health condition, but, to date, only a handful of studies have considered the effects of Long COVID on caregiving (defined here as the unpaid care work provided in the home or community by family and friends). Through interviews with people with Long COVID (30) and caregivers (9) in British Columbia, Canada, our research aims to document how Long COVID is affecting caregiving in the home to inform supportive health and care policy responses. We apply a feminist critical disability studies perspective, which conceptualizes care as relational and disability as more than a medical diagnosis of impairments, but as the result of complex interactions between physical and mental differences and social understandings of them. Interviews were analyzed using reflexive thematic analysis to illustrate how the novel nature of Long COVID created unique effects on household caregiving. PwLC particularly note how the symptoms of brain fog and exhaustion negatively affected their ability to complete household care tasks, self-care, and childcare, which in turn resulted in feelings of guilt. Lack of information about Long COVID created a heavy burden on PwLC and caregivers left to conduct research themselves, while medical gaslighting and lack of awareness about Long COVID generated demand for emotional labor and exacerbated burnout. Health and social policy innovation is urgently needed to respond to the needs of PwLC and their caregivers.