Men living with fibromyalgia-type pain: experiences as patients in the Swedish health care system

Authors


Margareta Paulson, Department of Nursing  and Health Sciences, Mid Sweden University, S-83125 O¨stersund, Sweden. E-mail: margareta.paulson@mh.se

Abstract

Background.  Individuals with fibromyalgia (FM) frequently use health care services and experience only short-term improvements. They often feel that health care staff do not take them seriously. This increases the burden of living with the illness.

Aim.  To describe how men living with fibromyalgia-type pain experienced being patients in the Swedish health care system.

Method.  Narrative interviews with 14 men who fulfilled the American College of Rheumatology criteria for classification of fibromyalgia. Content analysis was used when analysing the data.

Results.  The results are described using five themes. Theme I ‘Feeling afraid of being looked upon as being a whiner’ highlights how the men endured a lot of pain before they sought health care, and how difficult it was to find a receptive listener. Theme 2 ‘Feeling like a guinea pig’ shows that the men's feelings were twofold; they wanted examinations, even if these made them feel that they were being exposed to numerous treatments without any cure. Theme 3 ‘Feeling hopeful’ describes the hope for a cure after having been referred to a specialist clinic. Theme 4 ‘Feeling neglected’ illustrates being looked upon as an uninteresting patient and theme 5 ‘Feeling no recovery’ illustrates the pain relief they gained, but not the actual cure.

Conclusion.  Men with FM type pain experienced a long wait before treatment at a specialist clinic as well as no continuity and follow-ups in primary care and general hospitals. Encounters with engaged and skilful staff promoted the men's well-being despite the fact that no cure was available. Not being respected led to a feeling of being neglected despite the care received. Thus, the men had to accept the fact that they would never recover.

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