The GenDis project investigates how gendered chronic illness is managed by patients, patient organizations, clinicians, biomedical researchers, public health officials, and pharmaceutical industry. It situates gendered chronic illness at the intersection of three ongoing developments: personalized or precision medicine, public plans for rationalizing treatment, and global disruptions in the availability of pharmaceuticals.
The project focuses on three diseases: endometriosis, migraine and fibromyalgia. These three diseases are characterized by episodes of chronic pain. They are also debated in biomedical research and treatment in terms of their link to gendered embodied processes, especially ones involving hormones. The three diseases shed crucial light on tensions in emerging biomedicine. As chronic pain is difficult to standardize, it falls outside the logic of both precision medicine and rationalization. At the same time, pharmaceuticals used in its prevention and treatment may not be seen as ”essential drugs”, and are thus affected by drug shortages.
Materials and methods
We engage in multi-sited research, approaching the management of gendered chronic illness through four sites:
- Patient organizations and patient activism
- Public health governance, including both rationalization plans and approval of new and repurposed drugs
- Biomedical research on causative mechanisms and search for new therapies.
The data consists of bioscience research literature and media accounts of gendered chronic illness, online platforms and discussion forums for patients, and interviews and observations among patient organizations, people living with gendered chronic illness, clinicians treating patients, governmental and public health officials involved in drafting treatment guidelines, representatives of pharmaceutical industry, as well as biomedical researchers. We draw on ethnographic methods and affective and narrative textual analysis.
Our aim is to understand the emerging conceptualizations of gendered embodied differences in treating, preventing and managing gendered chronic illness. Through a case study focusing on pediatric pain, we also ask how gender intersects with other differences, such as childhood and adolescence. Through the empirical research, the project theorizes chronic pain as an embodied, intersectional phenomenon and explores the temporality of chronicity through questions of age and aging.