Abstract: The experience of living with fibromyalgia: confronting an invisible disability

Res Theory Nurs Pract 2002 Spring;16(1):19-31  Sturge-Jacobs M.  Memorial University of Newfoundland, St. John's, Canada.

Fibromyalgia (FM) is a complex, chronic, painful musculoskeletal syndrome which is characterized by extreme fatigue, disordered sleep, and other associated physical and cognitive problems. Because its etiology is unknown, and because no specific pathophysiological mechanisms have been found to underlie the syndrome, making a diagnosis is very difficult.

FM adversely affects the quality of life, and the societal costs based on medical expenses, lost wages, lost tax revenue and compensation expenditures are very significant. The purpose of this phenomenological study was to describe and enhance the understanding of the experience of living with FM. The participants included nine women ranging in age from 30 years to 56 years who had been diagnosed with the condition for more than a year. Data were collected by means of unstructured interviews.

Thematic analysis, using van Manen's (1990) methodology, identified eight themes: (a) pain-the constant presence, (b) fatigue-the invisible foe, (c) sleep-the impossible dream, (d) thinking of a frog (e) dealing with a flare-up, (f) longing for a normal life, (g) the power of naming-seeking a diagnosis, and (h) living within the boundaries. These themes were integral parts of the whole story, and through their interrelationships, the essence confronting an invisible disability was captured. The findings of this qualitative study have implications for nursing practice, education and research. It has become an increasing challenge for our health care system to adequately cope with the large numbers of persons diagnosed with chronic illnesses. Administrators of these systems can benefit from the information learned during this study.

PMID: 12371466 [PubMed – in process]

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