Date of Award
Doctor of Philosophy
Counselor Education and Counseling Psychology
Dr. Alan Hovestadt
Dr. Gary Bischof
Dr. Robin McKinney
Fibromyalgia is an illness of great controversy estimated to affect approximately 4% of the US population. There are no widely accepted etiological causes or clear physiological explanations of fibromyalgia. Only a few research studies have addressed the concept of illness uncertainty in patients with fibromyalgia. There are no current studies that examine how fibromyalgia patients experience, perceive, and understand their illness in terms of having a syndrome with an unknown etiology.
This qualitative study, using phenomenological methods, explored the concept of unknown etiology as one factor in illness uncertainty. Ten participants, diagnosed with fibromyalgia from 2-15 years were interviewed. The findings from the study are divided into two parts. The first part presents a description of each participant case along with each study participant's understanding of the cause of his or her illness. The second part of the findings offers the results from the data analyses at the cross case level and describes commonalities of the fibromyalgia illness experience.
The major findings of this study include the following: (a) common experiences of: pain, exhaustion, frustration, depression, cognitive difficulties, un-predictable and changing symptoms, not looking sick, and the experience of not being understood; (b) participants understood their illness as one that is invisible to others and one that is constantly changing; (c) the unclear etiology had either a continuing negative impact or negative impact at the beginning of one's illness course, whereas those diagnosed longer let go of worry about cause and shifted to a coping focus; (d) friends were perceived to be more supportive than family or members of the medical community; (e) specialists in rheumatology and pain management were perceived as having the best response regarding members of the medical community; (f) the response from medical practitioners is improving; and (g) achieving support varied depending on the person considered.
Discussion of the study findings include relating the findings to existing research regarding fibromyalgia and illness uncertainty, implications of the findings for Counseling psychologists, and the strengths and limitations of the study. This study sought to provide helpful information through stories of fibromyalgia patients, with hope of contributing to the scarce body of knowledge regarding the subjective experiences of this controversial illness.
Wheeler, Samantha L., "Exploring the Experiences of Living with a Controversial Illness in Patients with Fibromyalgia" (2011). Dissertations. 480.