The purpose of the present study was to focus on the patient
perspectives of living with chronic muscular pain, and to
identify factors that can explain and give further
understanding of how the condition influences everyday life.
Forty women with fibromyalgia, living in two different
cultural, health care and social security settings, Sweden and
the USA, were interviewed, using a semi-structured format.
Three preliminary typologies are suggested for further
studies: Encounters, Consequences, and Strategies. The study
is presented in two articles: Part I: Encounters and
consequences, Part II: Strategies for daily life.
This first article shows that the contradiction between the
patients' perception of illness and the lack of objective findings
is stressful. The women feel rejected, misunderstood, and
disbelieved, which prevents them from dealing with their
situation constructively. Long investigation periods provoke
anxiety, and confirmation of the diagnosis is a relief. Daily
routines are disrupted, conflicts between life roles lead to
additional stress and the women experience loss of ability to
perform valued activities, lack of physical fitness and loss
of future opportunities. Patients need early and adequate
information and the consequences of the condition must be
acknowledged and taken into consideration if secondary
economic and psychosocial consequences are to be minimized.