“Can Someone as Young as You Really Feel That Much Pain?” – A Survey on How People With Fibromyalgia Experience Healthcare in Sweden

Abstract

Background Research show that fibromyalgia has low credibility in healthcare, leading to poor treatment, lack of knowledge and disinterest. Therefore, people with fibromyalgia feel frustration, fear, anxiety and disappointment. Objective: The aim of this study was to explore the experiences of people with fibromyalgia in their encounters with healthcare personnel in Sweden. Method: A cross-sectional design, where 409 people with fibromyalgia answered an anonymous online patient-reported experience measure, developed specific for the study, with six closed questions and one open-ended question. Descriptive statistics were analysed by response frequencies. Correlation analysis were performed between demographic and clinical variables with the answers from the closed questions. Free-text answers were analysed with content analysis. Results: A third experienced the treatment as bad (34%) and that they were not being taken seriously (30.5%). Almost half (47%) always or mostly felt fear of seeking healthcare related to fibromyalgia and that the health care personnel did not understand their diagnosis (46%). The majority (54%) experienced that the health care personnel did not understand how fibromyalgia affected them or how they could help them. The findings were confirmed in the free-text answers that were categorized into: Scepticism and disregard, Ignorance and disinterest and Professionalism and empathy. There were positive significant correlations between age and five of the questions (ρ = .105–.181, p < .05–p < .01), indicating that lower age is correlated with a worse experience. Furthermore, the duration of fibromyalgia showed a significant correlation with feeling afraid of seeking healthcare because of fibromyalgia (ρ = .144, p < .01), the shorter duration, the greater was the fear of seeking healthcare. Conclusion: As a third of patients with fibromyalgia had bad experiences with healthcare, especially younger patients, knowledge about fibromyalgia needs to be increased and the patients should be taken seriously and treated respectfully, as well as given adequate support.