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Graduate Päivi Juuso. Photo: Erica Long

Women with fibromyalgia are still met with distrust

Published: 24 May 2013

Women with fibromyalgia, FM are met with distrust and lack of understanding from healthcare, at work, and also among friends and family. This is shown in a new doctoral thesis in nursing at Department of Health Science, Luleå University of Technology, LTU.

Women with FM are living with an always present, unpredictable pain that affects all parts of their everyday lives. As the pain is invisible for others, they are often met with distrust. This implies that women are living with a double burden as they live with an always present pain, and simultaneously are being doubted for their pain experience.

Doctoral student Päivi Juusos research Meanings of women’s experiences of living with fibromyalgia is a continuation on LTU Professor Siv Söderbergs research from 1999 that focused on women’s experiences of living with long-standing pain. Despite the fact that the knowledge about FM and long-standing pain has increased since then, this thesis shows that the majority of women with FM still are being met with distrust and ignorance.

– Women with FM are trying to shield themselves from feelings of vulnerability through looking fresh. They are also trying to live up to the demands from their surroundings of doing things as when they were healthy. This, however, increases others distrust, says Päivi Juuso, doctoral student in nursing at LTU.

What others can’t see, they can’t understand

Fibromyalgia is a chronic pain syndrome that mainly affects women in middle age. The everyday life is a struggle to manage pain and other symptoms. When the women are met with distrust and ignorance they withdraw from relations with others. The women are convinced that if there had been visible bodily signs of FM, it would have been easier to get understanding from others.

– Blood samples and x-rays cannot prove the FM diagnosis, and what is not seen, does not exist. This can be a reason why the women are met with lack of understanding.

Understanding decreases the need of healthcare contacts

Päivi Juuso has done individual interviews and focus group discussions with 41 women in ages 18-65 years. All women described that increased understanding and knowledge from healthcare, colleagues and family strengthened their possibilities to live a good life despite illness and limitations. When the women had the luck to meet healthcare personnel who wanted to help them they felt gratitude, but felt also sorrow as it had taken long time to get treatment based on understanding. If they had met understanding healthcare personnel from the beginning it would have spared them years of worry and pain .A trusting relationship decreased their need of contacts with healthcare and authorities.

– To be met with engagement and interest increased the women’s possibilities to be a part of their treatment, which gave them feelings of security, says Päivi Juuso.

Togetherness and confirmation are important

Having the strength to do ordinary daily chores independently, be together with friends, and being able to help others, women with FM found meaning and could feel well. To be listened to and confirmed implies feelings of feeling well and increases their possibilities to manage their illness. Associations for women with FM are important for them; at the association they can experience belonging and have the opportunity to confide without distrust.

– At the association the women’s needs of togetherness and belonging were met. This strengthened them and made them feel well.

Päivi Jussos research news has spread to other media: See below.