Women’s Experiences of Stigma in Relation to Chronic Fatigue Syndrome and Fibromyalgia

Åsbring, Pia; Närvänen, Anna-Liisa

doi:10.1177/104973230201200202

Cited by 259 publications

(188 citation statements)

References 25 publications

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“…Other research describes delegitimizing as having moral character called into question and being "psychologized" by HPs. 37 In line with the body of research referred to above, participants in the present study described not having their symptoms taken seriously or believed, and having it suggested to them that their symptoms may be the manifestation of an unacknowledged mental health problem. This was particularly problematic especially when the symptoms they were experiencing led to psychological distress.…”

Section: Theme 4: Impact On Mental Health and Role For Psychology-"supporting

confidence: 64%

Gastrointestinal dysmotility: A qualitative exploration of the journey from symptom onset to diagnosis

Twist

Ablett

Wearden

et al. 2018

Neurogastroenterology Motil

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Section: Theme 4: Impact On Mental Health and Role For Psychology-"supporting

confidence: 64%

Gastrointestinal dysmotility: A qualitative exploration of the journey from symptom onset to diagnosis

Twist

Ablett

Wearden

et al. 2018

Neurogastroenterology Motil

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“…The pain was described as being constant and without any distinct bodily location. Research (Åsbring & Närvänen, 2002; Söderberg et al, 1999) has shown that living with an undiagnosed condition, such as FM, means living in uncertainty and not being seen as a credible person. Being met with disbelief and not being seen as credible harms a person's dignity and causes additional pain (Söderberg et al, 1999).…”

mentioning

confidence: 99%

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

Juuso

Skär²,

Olsson³

et al. 2011

International Journal of Qualitative Studies on Health and Well

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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.

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“…Ware (1992) and Åsbring and Närvänen's (2002) research with people with chronic fatigue syndrome and fibromyalgia, uncovered remarkably similar themes to ours including delegitimization, stigmatization, suffering and contested definitions of illness. Children with chronic pain and their parents told Carter (2002) stories like those of our participants about feeling judged, misbelieved and labeled as difficult or dysfunctional (although among our participants "depressed" or "crazy" were the terms used).…”

Section: The Intersections Of Life Events Emotional Well-being and Tmentioning

confidence: 95%

Challenging the Biopsychosocial Model in a Chronic Constipation Clinic

2011

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The full-text may be used and/or reproduced, and given to third parties in any format or medium, without prior permission or charge, for personal research or study, educational, or not-for-prot purposes provided that:• a full bibliographic reference is made to the original source • a link is made to the metadata record in DRO • the full-text is not changed in any way The full-text must not be sold in any format or medium without the formal permission of the copyright holders.Please consult the full DRO policy for further details. AbstractIn this article we discuss the results of an ethnographic study of professionals' and patients' experiences within a specialist constipation clinic in England. Chronic constipation tends to be poorly understood and inadequately treated. Eleven patients were followed through their illness trajectory during a 5-month field work period, involving 21 home interviews, clinic-based interviews, participant-observation, and a focus group. Professionals were likewise observed and interviewed. The clinic could broadly be described as biopsychosocial in its approach. However, professionals expressed uncertainty about how best to provide biospychosocial care and suggested that some patients were not "open" to psycho-social therapies or to discussing psychosocial aspects of their disease. Patients' concerns were with being taken seriously, receiving treatment and narrating intersections of life events, emotional well-being and the bowels. We situate these findings within the discourse of "functional" disorders and discuss why implementing a biopsychosocial approach is problematic in this case. 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 31 32 33 34 35 36 37 38 39 40 41 42 43 44 45 46 47 48 49 50 51 52 53 54 55 56 57 58 59 Medicine has made creditable strides in prolonging life and enhancing the quality of life for people with a number of chronic diseases. However, "functional" diseases are a class of health conditions about which western biomedicine generally has little understanding and even fewer answers. These diseases cause significant suffering, yet routine investigatory tests do not detect any pathological cause. They have therefore come to be a category of exclusion existing in almost every medical specialty (e.g. functional paralysis or functional arthritis). Other commonly applied terms to designate functional disease are "idiopathic", "ambiguous chronic illness" (Johnson & Johnson, 2006) or even "medically unexplained physical symptoms" (MUPS) (Burton, 2003). Functional constipation belongs to the category of functional gastrointestinal disorders (FGIDs). It is defined as "infrequent or incomplete defecation not caused by medication, or specific medical or psychiatric disease" (Drossman, 1994, p. 11). In other words, it is a condition which occurs without any "definable dietary, systemic or local structural cause"(Lennard-Jones, 1994, p. 7). Essentially the organ/structure (in this cas...

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Women’s Experiences of Stigma in Relation to Chronic Fatigue Syndrome and Fibromyalgia

Cited by 259 publications

References 25 publications

Gastrointestinal dysmotility: A qualitative exploration of the journey from symptom onset to diagnosis

Gastrointestinal dysmotility: A qualitative exploration of the journey from symptom onset to diagnosis

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

Challenging the Biopsychosocial Model in a Chronic Constipation Clinic

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