Meanings of women's experiences of living with fibromyalgia

Abstract: The overall aim of this doctoral thesis was to describe meanings of women’s experiences of living with fibromyalgia (FM), a chronic pain syndrome that mainly affects women in middle age. From the overall aim, specific aims were formulated; meanings of pain for women with FM (I), meanings of being received and met by others as experienced by women with FM (II), meanings of feeling well for women with FM (III), and women with FM’s experiences of associations (IV). Data were based on narrative interviews (I, II, III) with 24 women and focus group discussions (IV) with 17 women. The interviews were analyzed through phenomenological hermeneutic interpretation (I, II, III) and thematic content analysis (IV).Findings show that pain is an ever-present experience for women with FM. As it is invisible to others, the women are met with distrust, which implies that women with FM live with a double burden. Further, the findings show that women with FM are living with an aggressive, unpredictable pain (I) and being doubted by others because of the invisibility of the pain (I, II). Being doubted was related to the women’s efforts to be active and look fresh despite pain (I, II). In contrast, the abilities to do daily chores independently and help others were described as ways to find meaning; this gave the women strength to keep control and feel well (I, II, III). The women with FM described a need for togetherness, belonging, and being appreciated as they are (II, III, IV). This induced feelings of security (II) and feeling well (III). To be listened to and taken seriously gave feelings of gratitude, and to be understood was described as strengthening (II, IV). Support from family, friends, and others with similar experiences to theirs led to feelings of being worthy (I-IV).The thesis suggests that meanings of women’s experiences of living with FM can be seen as striving for balance, because a split between their own needs and others’ expectations existed in all parts of their everyday lives. The painful body became a hinder in their relation to themselves and others. Being met with honesty, and interest, evolved feelings of confirmation and made the women feel well. At the association, the women could bring forward their own views without being disbelieved. In order to support women with FM’s quest for balance and to feel well, it is important to be aware of what facilitates and hinders their efforts.