Living with Autoimmune Illnesses
March 31, 2020
Kelly Joyce, PhD, a professor in the Department of Sociology and the Center for Science, Technology and Society (STS), and Mel Jeske, an alum of Drexel’s MS in STS program, published a series of articles that explore how people living in the United States make sense of and manage autoimmune illnesses. Drawing on 45 in-depth interviews with people who live with autoimmune illnesses, Joyce and Jeske highlight people’s everyday knowledge about living with chronic illnesses.
More than 80 illnesses are considered autoimmune or autoimmune related. These include illnesses such as lupus, multiple sclerosis (MS), type 1 diabetes, rheumatoid arthritis (RA), and Crohn's disease. The illnesses included under the autoimmune umbrella vary widely, but their common thread is the immune response: a person's immune system attacks its healthy cells, tissue, and/or organs. Although medical interventions provide an important tool to manage these conditions, people often use other sorts of interventions (e.g., behavioral changes, dietary changes) to complement the use of medical treatments. Such strategies are crucial to managing illness and participating in daily life.
Among Joyce and Jeske’s findings are that people who live with autoimmune illnesses use and value broad diagnostic categories like “autoimmune,” as well as narrow diagnostic categories like “MS,” to understand and explain their condition. This finding suggests that clinicians should consider presenting patients with both broad and narrow disease classifications when discussing autoimmune diagnoses, initially and overtime.
To read the articles and related press, explore the links below:
- Kelly Joyce & Melanie Jeske, “Revisiting the Sick Role: Performing Regimes of Patienthood in the 21st Century,” Sociological Viewpoints 33(1): 70-90.
- Kelly Joyce & Melanie Jeske, “Using Autoimmune Strategically: Diagnostic Lumping, Splitting, and the Experience of Illness,” Social Science & Medicine 246(February): 112785.
- Kelly Joyce, Jennifer James, & Melanie Jeske, “Regimes of Patienthood: Developing an Intersectional Concept to Theorize Illness Experiences,” Engaging Science, Technology & Society 6: 185-192.
- ‘But You Don’t Look Sick?’ How Broad Categories Like Autoimmune Impact Patient Experience, DrexelNOW