'What is expressed is not always what is felt': coping with stigma and the embodiment of perceived illegitimacy of multiple sclerosis

Grytten, Nina; Måseide, Per

doi:10.1179/174239505x56012

Cited by 18 publications

(27 citation statements)

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“…) which suggests the concept of the liminal self may have relevance to other chronic conditions. In keeping with the findings from previous studies, the findings support uncertainty as an ongoing feature of the lived experience with the prevailing threat of relapse (Johnson , Grytten & Måseide ). However, the current study draws attention to the experience of the individual whose symptoms of MS may not be considered as particularly intrusive.…”

Section: Discussionsupporting

confidence: 88%

The liminal self in people with multiple sclerosis: an interpretative phenomenological exploration of being diagnosed

Strickland

Worth

Kennedy

2017

Journal of Clinical Nursing

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Aims and objectives To explore the lived experience of the meaning of being diagnosed with multiple sclerosis on the individual's sense of self. Background The time leading up to and immediately following the diagnosis of multiple sclerosis has been identified as a time period shrouded by uncertainty and one where individuals have a heightened desire to seek accurate information and support. The diagnosis brings changes to the way one views the self which has consequences for biographical construction. Design A hermeneutic phenomenological study. Methods In‐depth qualitative interviews were conducted with 10 people recently diagnosed with multiple sclerosis. The data were analysed using interpretative phenomenological analysis. Findings This study presents the three master themes: the ‘road to diagnosis’, ‘the liminal self’ and ‘learning to live with multiple sclerosis’. The diagnosis of multiple sclerosis may be conceptualised as a ‘threshold moment’ where the individual's sense of self is disrupted from the former taken‐for‐granted way of being and propose a framework which articulates the transition. Conclusion The findings highlight the need for healthcare professionals to develop interventions to better support people affected by a new diagnosis of multiple sclerosis. The conceptual framework which has been developed from the data and presented in this study provides a new way of understanding the impact of the diagnosis on the individual's sense of self when affected by a new diagnosis of multiple sclerosis. This framework can guide healthcare professionals in the provision of supportive care around the time of diagnosis. Relevance for Clinical Practice The findings provide practitioners with a new way of understanding the impact of the diagnosis on the individual’s sense of self and a framework which can guide them in the provision of supportive care around the time of diagnosis.

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Section: Discussionsupporting

confidence: 88%

The liminal self in people with multiple sclerosis: an interpretative phenomenological exploration of being diagnosed

Strickland

Worth

Kennedy

2017

Journal of Clinical Nursing

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“…The present study suggests that some participants have difficulty disclosing their MS diagnosis as they fear causing distress to loved ones and fear negative reactions from others. These results accord with research suggesting that people with MS demonstrated disability by using crutches, for example, and felt that this helped them to feel in control by signalling that something was wrong, whilst others disclosed their MS to new acquaintances in order to avoid being viewed as ‘drunk’[15]. People with MS disclose or conceal their MS diagnosis in order to counteract devaluing social interactions [15].…”

Section: Discussionsupporting

confidence: 81%

Experiences of diagnosis and treatment among people with multiple sclerosis

Edwards¹,

Barlow²,

Turner

2008

Evaluation Clinical Practice

121

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“…For example, over time, people might adapt to MS by surrounding themselves with supportive others, educating others about their illness, and strategically choosing to conceal or disclose their MS status. 13,[16][17][18] If so, as people gain experience coping with MS, they may be less likely to anticipate or experience being a target of stigma. [19][20][21][22] Consistent with this adjustment view, people with MS often describe developing a more positive, optimistic outlook over time.…”

Section: Surveymentioning

confidence: 99%

Adapting to Multiple Sclerosis Stigma Across the Life Span

Spencer

Silverman

Cook³

2019

International Journal of MS Care

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Background: Most people with multiple sclerosis (MS) experience social stigma at mild-to-moderate levels, with potential implications for their health. However, little is known about how adults adapt to social stigma across their lives, or with respect to MS stigma in particular. Using a large national database and controlling for confounding demographic and health-related variables, this study examined whether longer MS duration was associated with reports of stigma in people with MS. Methods: Data were available from 6771 participants enrolled in the semiannual survey conducted by the North American Research Committee on Multiple Sclerosis (NARCOMS). Participants completed measures of MS stigma and reported on demographic and health-related covariates. Results: With disability level, age, and other demographic and health-related covariates taken into account, the longer respondents had lived with MS, the less stigma they felt. Results were similar for people's anticipation of stigma and their feelings of isolation because of stigma. Conclusions: As people gain experience living with MS, their adaptations to the social aspects of their illness may allow them to structure their lives so that they can mitigate the impact of stigma. Doctors, therapists, and other health care personnel should consider that patients with MS might be especially concerned and distressed by stigma earlier in the course of their illness.

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'What is expressed is not always what is felt': coping with stigma and the embodiment of perceived illegitimacy of multiple sclerosis

Cited by 18 publications

References 0 publications

The liminal self in people with multiple sclerosis: an interpretative phenomenological exploration of being diagnosed

The liminal self in people with multiple sclerosis: an interpretative phenomenological exploration of being diagnosed

Experiences of diagnosis and treatment among people with multiple sclerosis

Adapting to Multiple Sclerosis Stigma Across the Life Span

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