Described as a “mass disabling event,” long COVID forces millions of Americans to take time off work, work only part-time, or leave the workforce altogether. An estimated 17 million Americans – about 7% of the total U.S. population – experience long COVID symptoms such as “brain fog,” shortness of breath, and debilitating fatigue. Lost income due to long COVID is estimated in billions of dollars annually, and leads to serious economic hardship for many families. Workplace accommodations, such as more frequent rest breaks, sensory-friendly spaces, flexible schedules, or telework could help people with long COVID remain in the workforce. However, people with long COVID face significant challenges obtaining workplace accommodations or, if unable to continue working, Social Security Administration (SSA) disability benefits. We know little about people’s experiences with the legal and administrative definitions of long COVID as disability, or how negotiating workplace accommodations and applying for SSA benefits work in practice.
Drawing on in-depth interviews, this study employs a social ecological framework to identify workplace, policy, and SSA administrative barriers for people with long COVID. This framework aligns with the social model of disability that focuses on disabling societal conditions rather than individual body impairment. While the study specifically investigates long COVID, its results can also benefit many individuals with overlapping symptoms that similarly affect employment such as chronic fatigue syndrome, fibromyalgia, and dysautonomia. Working with stakeholders and long COVID patient advocates will ensure widespread dissemination of results to individuals, their families, and advocates, as well as policymakers and SSA administrators.