The Lived Experience of Fibromyalgia in African American Women

Abstract

This study aimed to learn what it is like for African American women to live with fibromyalgia. Van Manen's phenomenological method of writing and rewriting guided the inquiry. The sample included 10 women, who were interviewed for 30 to 60 minutes each. Two agreed to second interviews, for a total of 12 interviews for data analysis. Data analysis revealed the following themes: (a) managing the symptoms, (b) becoming a self-advocate, (c) medications camouflage the pain, (d) coming to grips with the illness means making changes, (e) being accused of "taking a free ride" angers them, (f) support comes from self and spiritual connections, and (g) a certain amount of secrecy makes it easier to live with the illness. Recommendations focus on using a holistic approach to help African American women achieve or maintain their integrity.

A meta-ethnography of patients’ experience of chronic non-malignant musculoskeletal pain

“…66,312,323,325,326,330-334,336,338,342-345,350,353-358, 362-365,367,372,374,376,379,385-387 Twenty-eight papers (23 individual studies) explored the experience of people with fibromyalgia. 324,[327][328][329]335,337,[339][340][341]346,349,351,352,[359][360][361]366,373,375,377,378,[380][381][382][383][384] A description of these studies is provided in Tables 6 and 7, showing for each study the age range and source of participants, the country where the study was carried out, the method of data collection and the methodology used. …”

The relevance of client-healthcare provider communication to the appraisal of illness uncertainty in women with fibromyalgia syndrome.

“…This conveyance of skepticism from HCPs, family, and members of their social network stands out as a prominent theme in the qualitative literature. Participants' narratives reveal perceptions of being labeled as malingerers, lazy, crazy, and noncompliant when seeking healthcare for FMS (France, Farrell, Kearney, & Myatt, 2008;Egeli et al, 2008;Lempp et al, 2009;Schaefer, 2005;Schoofs et al, 2004). …”

“…Women with FMS present with symptoms that are complex and not necessarily visible to the naked eye; they struggle with convincing HCPs, friends, colleagues, and even family members to believe their symptoms are real (Lempp et al, 2009;Schaefer, 2005).…”

“…Participants' narratives reveal the poor quality of communication that transpires through negative client-HCP interactions contributes to illness uncertainty and affects SWB in women with FMS (Dow et al, 2012;Egeli et al, 2008;Lempp et al, 2009;Madden & Sim, 2006;Sallinen, Kukkurainen, Peltokallio & Mikkelsson, 2011;Schaefer, 2005;Schoofs et al, 2004;Thorne et al, 2004). Deiner (2000) defined SWB as an individual's assessment of their overall quality of life.…”

“…Furthermore, findings indicate that lack of support from healthcare professionals has contributed to the humanistic burden experienced by women with FMS. In addition to living with multiple debilitating symptoms, women with FMS face a diagnosis that has been viewed with skepticism by the healthcare community (Hayes et al, 2010;Lempp et al, 2009;Schaefer, 2005;Thorne et al, 2004;Briones-Vozmediano, Vives-Cases, Ronda-Perez, & Gil-Gonz, 2013).…”