Living with a double burden: Meanings of pain for women with fibromyalgia

Abstract

Living with fibromyalgia (FM) means living with a chronic pain condition that greatly influences daily life. The majority of people with FM are middle-aged women. The aim of this study was to elucidate meanings of pain for women with FM. Fifteen women with FM were interviewed about their pain experiences and a phenomenological hermeneutic interpretation was used to analyse the interview texts. The findings show that meanings of pain for women with FM can be understood as living with a double burden; living with an aggressive, unpredictable pain and being doubted by others in relation to the invisible pain. The ever-present pain was described as unbearable, overwhelming, and dominated the women's whole existence. Nevertheless, all the women tried to normalize life by doing daily chores in an attempt to alleviate the pain. In order to support the women's needs and help them to feel well despite their pain, it is important that nurses and health care personnel acknowledge and understand women with FM and their pain experiences.

To walk or not to walk: insights from a qualitative description study with women suffering from fibromyalgia

“…During the discussions, participants further highlighted the advantages of walking such as pain relief, increased strength and mobility, improved appetite, weight loss, lower blood sugar and cholesterol levels, as well as increased independence, self-esteem, and well-being. These findings are aligned with those obtained in previous studies with people suffering from chronic musculoskeletal pain [36] and from fibromyalgia specifically [6,37].…”

“…It therefore appears necessary to decrease or eliminate the set of very frequent physical and psychological inhibitors identified by women participating in this study. Again, tailoring walking programs in close collaboration with women themselves would be one way to support their confidence and facilitate their feeling of control over the physical activity that they are performing [37,39,40]. In addition, this approach would help overcome the "lack of time" barrier as women would be able to plan events and better manage their time, thus increasing their ability to walk [4,37,41].…”

“I'm not the woman I was”: Women's perceptions of the effects of fibromyalgia on private life

“…Therefore, in this case, the traditional feminine role as housekeeper acts as a strategy to keep their self-esteem and selfworth instead of feeling as a burden to the family. This finding aligns with another study, whereby the authors found that women tried to normalize life by focusing on daily chores in an attempt to distract their minds and alleviate the pain that dominates their daily lives (Juuso et al, 2011). Other authors also showed that women with FM felt well despite pain and fatigue when they had the strength to do ordinary chores independently, such as taking care of their children, cooking dinner or cleaning the home, adjusting chores to their physical ability (Juuso, Skär, Olsson, & Söderberg, 2012).…”

“…The specific difficulties at home have been explored primarily in Northern European Countries (Hallberg & Bergman, 2011;Juuso, Skär, Olsson, & Söderberg, 2011;Soderberg & Lundman, 2001). Sallinen (2012) distinguishing between the women with FM who receive support and help from their family -who did not feel questioned and had been able to share their domestic workload-; and those women who continue with their work and home duties at the cost of their own health and well-being.…”

The significance of FM associations for women with FM

“…Living with FM means living with a long-term pain syndrome that has a considerable impact on daily life [1][2][3][4][5][6][7][8]. Several studies [7,9,10] have shown that people with invisible chronic illnesses, such as FM, lack support. In contrast, studies [11,12] have also indicated that the main strategies for managing a life with pain and fatigue, such as in cases of FM, entailed help from others.…”