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Accepted Paper:

"illness changes the way you feel": managing the lived experience of chronic disease and emerging challenges to the biomedical hegemony  
Paula Saravia (Center for Intercultural and Indigenous Research (CIIR)) Patricia Junge (Heidelberg University)

Paper short abstract:

We show lived experience of patients in urban and rural Chile and the agentic ways in which they interpret and act upon chronic suffering. We argue that patients share ideas and practices that translate into different imaginaries of well-being, which may challenge the hegemonic biomedical approach.

Paper long abstract:

In this paper we discuss the challenges and opportunities of self-management of chronic disease by looking at the lived experience of illness in Chile. Based on qualitative research in urban and rural areas, we present ethnographic evidence on the agentic dimension of chronic diseases and the ways in which people interpret and act upon suffering. We argue that patients share ideas of successful treatment outcomes that translate into different imaginaries of well-being, which may or may not coincide with mainstream therapeutic education (TE) or other biomedical therapeutic guidelines.

How do diagnosed patients relate to the biomedical therapeutic model? What are the alternative subjective frameworks that emerge during treatment? How do people and their communities challenge biomedical knowledge? First, we discuss the health seeking behavior of policonsultant patients diagnosed with not localized ill-health syndromes and their approach to unconventional therapies as part of their self-management strategy. Secondly, we examine the case of Aymara tuberculosis patients and their struggle in administering stigma and exclusion. We explore shared illness semantic networks that help them to cope with a chronic infectious disease that heavily impact their emotional well-being. Finally, our focus on the lived experience of both not localized illness and tuberculosis shows that patients are active in appropriating plural medical frameworks in order to resist and contest established medical knowledge such as the division between mind and body, and the global standardization of well-being.

Panel P043
Embodiment, identity and uncertainty in chronic illness [MAN]
  Session 1