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- Convenors:
-
Ann Kristin Augst
(TU Dortmund)
Jesper Petersson (Sociology and Work Science at University of Gothenburg)
Doris Lydahl (University of Gothenburg)
Lisa Wiedemann
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- Format:
- Traditional Open Panel
Short Abstract
The paper explores how people with chronic post-infectious illnesses such as ME/CFS navigate fragile futures and social absences, asking how STS approaches and patient knowledge can help create more resilient infrastructures of care.
Description
Chronic post-infectious illnesses such as ME/CFS, Long Covid, and lupus are both a consequence of what has happened and a prefiguration of what is yet to come. These illnesses are often “illnesses you have to fight to get” (Dumit, 2006), meaning they are frequently contested both epistemologically and ontologically within medicine as well as by society at large. Sufferers may be told that it is “all in your head”, a harmful psychosomatic view. For within the gold standard of evidence-based medicine, to suffer from an illness without distinct biomarkers often means to suffer, too, from the absence of medical and societal recognition. Left alone, people must often find ways to navigate their fragile futures and become knowledgeable in managing their conditions and everyday lives.
Chronic post-infectious illnesses are closely connected to well-known STS topics such as patient activism, patient knowledge, lay expertise, self-tracking and infrastructures, as well as standards and classifications. Care in practice is often described by STS scholars as fragile, as zones of tinkering. But what is different about conditions that are not fully medicalised or legitimised? How do these experiences of fragility differ from other forms of ‘chronic living’, and in what ways can established STS approaches be mobilised to understand them? How might STS frameworks need to be intersected with disability studies/crip theory, digital sociology, the sociology of diagnosis and medicine, and research on contested illness?
Building future “chronic care infrastructures” (Langstrup, 2013) recognising long-standing patient knowledge cultures is one pathway towards more resilient futures, in light of the dis_abling potentialities of viruses. Yet these futures must also reckon with the social absences produced by illness. Hence, we invite contributions addressing questions such as: What role can STS play in facilitating interdisciplinary collaboration to co-create less fragile futures in the presence of post-infectious illness?