Background Diagnosis of FMS is curently made within a biomedical paradigm but remains contentious (Erlich, 2003; Hadler, 2004). Quallitative research (Sim and Madden, 2008) predominantly conducted in Scandinavia and North America has explored the experience of living with Fibromyalgia. There is an absence of studies investigating this illness experience of those recently diagnosed or utilising a prolonged period of engagement.
Objectives The primary aim of this study was to describe the experiences of individuals recently diagnosed with fibromyalgia syndrome and how they develop over time. The secondary aim was to develop a theoretical ‘model’ that could help clinicians understand how FMS affects patients and their lives.
Methods A theoretical sampling strategy was used to identify 23 individuals (22 female, 1 male) with a first diagnosis of FMS by a Consultant Rheumatologist, within a UK Hospital setting. Qualitative in-depth semi-structured interviews (n=52, over a 24 month period) were used to identify the perceptions and experiences of individuals recently diagnosed with FMS. The methodological principles underpinning the study were drawn from pragmatism, critical reflection and feminism (data collection). The design was iterative and emergent.
Interviews were digitally recorded and transcribed verbatim. Narrative thematic analysis was used to analyse the textual data from the interviews. Critical reflection showed the resonance of these findings with the narrative typologies of “quest, chaos and restitution”, described by Frank (1995 p.76). These were utilised and further developed to provide a theoretical framework to explain the lived experience of being newly diagnosed with FMS.
Results The experience of being diagnosed and living with FMS is biographically disruptive, threatens identity and challenges patients’ understandings of their bodies and the lives they live. Consistent with Arthur Frank´s narrative typologies 3 dominant themes of quest, chaos and restitution were identified. This study challenge’s Frank’s narrative of quest as functionally enabling, proposing the division into sub-categories of active engagement and active dis-engagement. Each narrative preference is not uniform but contains common characteristics as it is told through the unique perceptions and experiences of the individual.
Conclusions This study provides further evidence for the robustness of Frank’s model of illness narratives, whilst extending it to explain the experience of being recently diagnosed with FMS. By allowing individuals the opportunity to recount their stories it might be possible for clinicians to recognise these plotlines and understand how the individual is interpreting their illness experience. This might facilitate patient-clinician engagement and the implementation of more individualised holistic care.
References Erlich, G. E., 2003. Pain is real: fibromyalgia isn’t. Journal of Rheumatology. 30: 1666-7
Frank, A., 1995. The wounded storyteller. London. The University of Chicago Press Ltd.
Hadler, N M., 2003. “Fibromyalgia” and the medicalization of misery. Journal of Rheumatology 30: 1668-7
Sim, J., Madden, S., 2008. Illness experience in fibromyalgia syndrome: a metasynthesis of qualitative studies. Social Science and Medicine. 67: 57-67
Disclosure of Interest None Declared
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