Living with Long COVID
The effects of long COVID are not just physical — they are social as well. Ethnographic studies have shown that the more invisible and chronic an illness, the more social and psychological harm it can do. Long COVID is shaping up to fit these criteria. Using people's stories of life after COVID when serious symptoms linger, we are studying how Arizona adults gain legitimacy and support when their symptoms and suffering isn't readily apparent.
This ethnographic study proposes to collect people’s extended post-COVID personal narratives about the social consequences of their illness to understand the consequences of and for complex, lingering physical symptoms. Much of what we know ethnographically about chronic “invisible” illnesses comes from anthropologists work on fibromyalgia, chronic fatigue syndrome/ME, and chronic pain. In such analyses, the moral worlds of those suffering symptoms strongly shape how others react to them and then also how they experience their illness. Social legitimacy is something patients will probably struggle for. Social support and social roles are tied to this in complex ways: illness can sometimes draw in others and provide a basis for social connection and the emotional impacts of illness seem tied to the extent to which is interrupts or forestalls the performance of people’s most valued social/productive roles.
But this raises interesting questions about the wake of pandemic illness: what happens when these effects are truly widespread (global in fact)? Does it buffer these types of losses of social legitimacy with unfulfilled social and productive roles? Or is this effect only seen in some? Do patients adopt and benefit from emergent “shared narratives” of the causes and meanings of their symptoms – adding to their social legitimacy? Or, is it is like other prior chronic “invisible” conditions, where each person mostly struggles alone to manage the negative moral meanings and social consequences of their illness? Does the experience of associated co-morbidities matter here? And how to gender roles shape this, as a core aspect of social identities?