Organic Local Theorists: A Patient and Provider Ethnography of Inflammatory Bowel Disease

Abstract

Inflammatory bowel disease (IBD) is a group of gastrointestinal disorders characterized by inflammation. Beyond biomedicine, there are plural realities and possibilities created by patients and care providers who must live with and treat this chronic disease. Based on ethnographic research conducted in a pediatric gastroenterology clinic in New York City, this thesis engages patient, family, and caregiver narratives of IBD with biomedical, historical, and anthropological perspectives of health and care. I interpret heterogeneous experiences of illness through the anthropological frameworks of local biologies, lived experience, and praxiography. I extend Georges Canguilhem’s medical philosophy to current clinical practice, suggesting that caregiving requires integrated approaches that account for life at the orders of form and experience. Ultimately, this thesis hopes to deepen understanding of chronic disease while privileging the individual wisdom and dignity of patients.