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Interembodiment among Long Haulers and their carers
Emily Mendenhall1, Shreeja Banerjee2, Ayo Wahlberg3
1Walsh School of Foreign Service, Georgetown University, United States.
Abstract:
Millions of people around the world experience the lingering disabling health effects of the pandemic, rendering new forms of chronic living. Chronic living is an interembodied experience, where people attend to, experience, and take care of themselves and their medical conditions with the indispensable help of loved ones, in differing life conditions, and with stratified access to (lifesaving) medical treatment and care. We suggest that this form of chronicity inherently involves caregivers who experience chronic disruption and dynamism. Nested within a study of Long Haulers involving more than 100 interviews, we draw from three case studies that illuminate an interdependence among patients and their carers where not only their social lives are mutually reinforced with others but their bodies are, too. We employ a theory of interembodiment to reveal how sick roles become essential elements of everyday life that are emotional, material, social and biological. Our first case study reveals an intergenerational connection between a Long Hauler and her children who are also living with the condition. The second case reveals how deeply illness is embodied among and between a Long Hauler and her caretaker who is battling cancer-both whose health futures remain uncertain. The third case how a Long Hauler who cares for her son with dementia receives support and legitimacy from a digital community. These examples demonstrate various forms of interembodiment that become realized in chronic living as people ill from Long Covid navigate the layers of support in the home, community, and clinic. As a consequence, people living with complex chronic conditions like Long Covid often - and ironically - must expend considerable amounts of energy in trying to have their condition acknowledged, treated, and cared for when engaging with family, friends, employers or healthcare professionals.
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