“Governed by the pain”: narratives of fibromyalgia

McMahon, Lindsay; Murray, Craig; Sanderson, Joanne; Daiches, Anna

doi:10.3109/09638288.2011.645114

Cited by 33 publications

(41 citation statements)

References 28 publications

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“…Fibromyalgia as an illness experience requires understanding and action, from the person at the centre of the experience, and those who surround and support this individual (McMahon et al . ). While there is a growing South African body of literature related to the subject, most studies are concerned with clinical aspects, such as chronic pain diagnosis and treatment (Namane , Raff et al .…”

Section: Introductionmentioning

confidence: 97%

“…A person with fibromyalgia, their practitioners, institutions, workplaces and social networks are continuously challenged to prove the existence of the condition as a serious and chronic illness (McMahon et al . , Chen ). This paper aims to assess the impact of contestation related to fibromyalgia as a diagnosis on an individual's ability to articulate their experience to family and support networks.…”

Section: Introductionmentioning

confidence: 99%

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The role of ‘social support’ in the experience of fibromyalgia - narratives from South Africa

Cooper

Gilbert

2016

Health Soc Care Community

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This paper focuses on the role of 'social support' in the experience of fibromyalgia (a musculoskeletal pain disorder) in South Africa. In-depth semi-structured interviews were used to collect narratives from 15 participants. Sources of social support constitute important mechanisms for coping with the illness experience of fibromyalgia. In providing a space for consultation and validation of the diagnosis of fibromyalgia, and the person living with the condition, people giving support fulfil a critical role in shaping the experience. The findings show how support from family, partners, and peers plays an integral role in the process of accepting fibromyalgia diagnosis, adapting to the demands of the condition, and seeking help from healthcare providers. The findings also show the ways in which people with fibromyalgia provide support for others with the condition, and the importance of this peer network in shaping the paths and outcomes of this illness experience. The findings of this study corroborate existing evidence that show fibromyalgia to be a complex condition to manage, due to the multiplicity, uncertainty and contestation that feature in the experience of the illness. Additionally, this study presents the challenges related to the limitations of access to healthcare in the South African context, and the utility of narrative approaches in garnering insight into the ways in which social support is harnessed in this environment.

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Section: Introductionmentioning

confidence: 97%

Section: Introductionmentioning

confidence: 99%

The role of ‘social support’ in the experience of fibromyalgia - narratives from South Africa

Cooper

Gilbert

2016

Health Soc Care Community

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“…3 makes sense when it is placed in relation to the explanations found in the literature on the adaptation process, which FM sufferers must face (44). Said process can be set out by a division of the following phases: explaining previous personal experience to FM; being given a diagnosis and accepting it; negative feelings towards oneself upon the manifestation of suffering; feeling trapped in ones’ own body; adaptation to FM; and continuing to fight for a better quality of life (45). …”

Section: Discussionmentioning

confidence: 99%

The social construction of fibromyalgia as a health problem from the perspective of policies, professionals, and patients

Briones-Vozmediano¹

2016

Global Health Action

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This article is a review of the PhD thesis written by Erica Briones-Vozmediano, entitled, ‘The social construction of fibromyalgia as a health problem from the perspective of policies, professionals, and patients’. The findings show that in Spain, the fact that fibromyalgia (FM) lacks recognition still remains: in policies, in the clinical and professional fields, and in the patients’ social circle. These three spheres have an influence on how this disease is constructed on a social level. International health policy has not yet taken steps to reflect the emergence of this recently diagnosed disease. The care for patients suffering from FM, who are mainly women, leads to frustration among the healthcare professionals and desperation among the patients themselves, as a resolutive treatment for the disease is not existing. Patients show resistance at assuming the sick role. They want to carry on undertaking their daily activities, both in the public sphere and in the private one. Roles involving the gendered division of labour were found to follow a rigid pattern, both prior to and subsequent to the disease, as the causes that led to frustration for men or women differ according to activities that are socially assigned to them. In practice, FM is conceived exclusively as a women’s health problem, which may result in a gender-biased patient healthcare attention. It is recommended that the implementation of specific policies for FM which could resolve this evident shortcoming should take place. To draw attention on a social level to certain illnesses considered to be attributed to women, such as FM, is of utmost importance, in order to allow the patients to be socially recognised as suffering a real and disabling disease.

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“…Studies [18,19] have shown that peer support is important. However, research has also shown that for women with FM, the invisibility of their condition leads to mistrust and a lack of understanding from others, including friends, family, and healthcare personnel [1,8,10]. Such disbelief and lack of understanding increase the experience of uncertainty and contribute to social withdrawal and isolation [6,7].…”

Section: Introductionmentioning

confidence: 91%

“…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.…”

Section: Introductionmentioning

confidence: 97%

The significance of FM associations for women with FM

Juuso

Söderberg

Olsson

et al. 2013

Disability and Rehabilitation

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This study highlighted the need for communication based on a shared understanding between people with chronic illness and healthcare personnel to support and strengthen women with FM in their daily lives. The FM associations meet the needs for togetherness, confirmation, and information that the women with FM in this study described and healthcare personnel could not satisfy. Healthcare personnel can learn from FM associations how to empower women with FM in their everyday lives.

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“Governed by the pain”: narratives of fibromyalgia

Abstract: The narrative is characterized by a lack of movement and resolution, with participants engaged in an enduring struggle against the challenges of FM. Psychological approaches that facilitate this ongoing adjustment process may prove beneficial in FM treatment and rehabilitation.

Cited by 33 publications

References 28 publications

The role of ‘social support’ in the experience of fibromyalgia - narratives from South Africa

The role of ‘social support’ in the experience of fibromyalgia - narratives from South Africa

The social construction of fibromyalgia as a health problem from the perspective of policies, professionals, and patients

The significance of FM associations for women with FM

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