Overview
The GenDis project investigates how gendered chronic illness is managed by patients, patient organizations, patient activists, clinicians and biomedical researchers. It situates gendered chronic illness at the intersection of ongoing developments in personalized or precision medicine, public plans for rationalizing treatment, healthcare structures, public debates about pain medication and global disruptions in the availability of pharmaceuticals.
The project focuses on three chronic conditions: endometriosis, migraine and fibromyalgia. These three illnesses 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 illnesses shed crucial light on tensions around treatment. For example, 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 and chronic pain through five sites:
- Experiences of people living with chronic illness
- Patient organizations and patient activism
- Clinics
- Biomedical research on causative mechanisms and search for new therapies
- Public health governance
The data consists of bioscience research literature, public health strategies and media accounts of gendered chronic illness as well as interviews with patient organizations, people living with gendered chronic illness, clinicians treating patients, and biomedical researchers. We draw on ethnographic and other qualitative research methods.
Aims
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, socially debated phenomenon and explores the temporality of chronicity through questions of age and aging.
