Narrating Autoimmunity through Biographies of Illness, Narrative Medicine, and Treatment

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This project focuses on how healthcare practitioners and patients coproduce knowledge about autoimmunity and its treatment. This study looks at how the organizing metaphor of autoimmunity understanding of the body and its processes. It will explore how autoimmunity is being actively conceptualized through patient communities and alternative practice in functional medicine by looking at how patients and patient communities with chronic conditions communicate. This study will be of interest to medical researchers, health care workers, patients and their families. The goal of this project is to understand how patient-practitioner co-production of knowledge, specifically through practitioner attention to patient narrative and biography, to address these as vectors of illness. This research uses methods from medical anthropology to understand how functional medicine, an integrative approach to autoimmune disease, might serve as a model. During the fellowship period, the PI will conduct ethnographic study of individual subjective narratives of autoimmune disease through individual interviews with patients and practitioners and observation of online communities of illness. The study frames these narratives through a science and technology studies approach to analyze the social and cultural factors shaping the medical and popular concepts that allow patients and practitioners to link experience of social exclusion to symptoms marked as “autoimmune.” Beyond the specific fields of STS and medical anthropology, this project will help inform future projects that aim to advance personalized and narrative healthcare practice.This award reflects NSF's statutory mission and has been deemed worthy of support through evaluation using the Foundation's intellectual merit and broader impacts review criteria.