What is it about?
This repeat interview study is empirically grounded in 28 interviews with 14 people with progressive multiple sclerosis. We identified gender differences in diagnosis-seeking which impacted subsequent sense-making. Male respondents found a diagnosis of multiple sclerosis difficult to come to terms with, and an enduring sense of loss or anger could inhibit further sense-making. A diagnosis of multiple sclerosis was more difficult to obtain for women respondents, and any sense of certainty that diagnosis provided framed their subsequent sense-making strategies. The complex sequelae of multiple sclerosis require that self-management strategies are both contextual and timely, although even the most accomplished self-managers can lose their sense of self with neurodegeneration. Disease progression can be associated with suicidal ideation, suggesting the need for greater dialogue to ensure that people with multiple sclerosis are adequately supported to fulfil their quality of life at all stages of neurodegeneration. These lay perspectives emphasise the articulation of affect rather than the rendering of a medical diagnosis, although diagnosis may provide a degree of certainty in the short term. The ethos of self-management ensures people attempt to retain their sense of ‘normality’ and existent social roles for as long as possible, but this ethos can negate both one’s ability to self-manage and the management of self.
Featured Image
Why is it important?
This article explores how people with progressive multiple sclerosis give meaning to their experiences. It builds upon the self-management literature, which has captured the tension between the desire for retaining normalcy and the increasing burden of self-management associated with chronic disease progression.The necessity of self-management ensures people attempt to retain their sense of ‘normality’ and existent social roles for as long as possible, but this burden can also inhibit both one’s ability to self-manage and the management of self.
Perspectives
We identified a clear gendered response to the experience of living with MS, which sug- gests that men and women may have different needs, both at the time of diagnosis and during subsequent sense-making. However, gender differences tend to diminish with disease progression, as both men and women express fears for the future and express suicidal ideation. Such fears can be compounded by additional caring responsibilities, while active participation in the MS community can provide a supplementary source of support. Decades after the identification of the varied life trajectories and illness experiences of people with MS, there remains a need for more assistance to be given to people who are coming to terms with a diagnosis of MS and living with its progressive impact (NICE, 2016). For some people with MS, diagnosis is empowering in the short term, but, in the absence of tailored formal self-management programmes of support, individually identi- fied coping strategies become burdensome over time. We therefore call for greater public discussion of what it is like to live with a progressive and degenerative condition so that both health services and lay support might adequately address the needs of people with progressive MS and assist them to achieve quality of life where possible.
Dr Julia Frost
University of Exeter
Read the Original
This page is a summary of: A qualitative investigation of lay perspectives of diagnosis and self-management strategies employed by people with progressive multiple sclerosis, Health An Interdisciplinary Journal for the Social Study of Health Illness and Medicine, November 2016, SAGE Publications,
DOI: 10.1177/1363459316674787.
You can read the full text:
Contributors
The following have contributed to this page
