Our stories are different: narratives of fibromyalgia, the sick role, and leisure-based self-care
This study focused on the lives of people who have Fibromyalgia Syndrome (FMS), a condition resulting in chronic generalized musculoskeletal pain (Henriksson & Burckhardt, 1996). FMS is one of a number of “functional disorders,” and as a result, its legitimacy as a real disease is often called into question (Segall, 1976). The main goal of this study was to gather narratives from people with FMS in order to explore sick role theory, leisure-based self-care, constraints to daily living, and leisure-based coping for people with nonratified chronic illness. Focus groups, in-person interviews, and phone interviews were conducted with 2 men and 26 women over the course of a 3 month period. The discussion in each focus group or interview was prompted by questions from an interview guide (Patton, 1990) and was guided by grounded theory (Glaser & Strauss, 1967). The end result of my data analysis included the delineation of 6 themes as well as the creation of a set of 5 synthesis stories. The results of this study suggest that leisure-based self-care may function as an alternative to the set of steps outlined in sick role. Results also indicated that participants faced severe social, psychological, and tangible consequences of their failure to adhere to the sick role. The results were also able to add nuance and context to existing leisure research concepts, particularly leisure-based coping and leisure-based constraints.
Fibromyalgia Syndrome, sick role theory, leisure, self-care
University of Illinois - Urbana-Champaign
Networked Digital Library of Theses and Dissertations
University of Illinois at Urbana-Champaign