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

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.

The experience of waiting and life during breast cancer follow-up.

Much research exists on quality of life issues with breast cancer survivors. However, there has been little done on the waiting experience itself, and on the experience of follow-up from the women's perspective. Women who have been diagnosed and treated for breast cancer live with the condition for a minimum of 5 years, waiting for the next medical intervention; waiting for the next battery of tests; waiting for the next physician check-up. Throughout most of these years they may feel healthy, but they experience visits to cancer clinics, medical testing, and physician interactions. Women's accounts of their experiences of waiting and life during follow-up for breast cancer has not been the focus of research on the quality of life of breast cancer survivors. In particular research that uses a qualitative approach, in which women recount their experiences in their own language, has been missing. This study used a phenomenological approach, telling the stories of waiting and life throughout follow-up of nine women. The women's experiences are captured in four themes: life-changing; a sense of belonging; uncertainty; needing to know.