The Meaning of Women's Experiences of Living With Multiple Sclerosis

Abstract

We conducted a qualitative inquiry in order to describe the meaning of women's experiences of living with multiple sclerosis (MS). Multiple sclerosis is a chronic autoimmune disease of the central nervous system. The majority of persons living with MS are women. Living with MS has been described as difficult because of the uncertainty of the illness. Ten women with MS were interviewed and the interviews were analyzed with a phenomenological hermeneutic interpretation. In this study, we suggest that the meaning of living with MS for women can be understood as trying to maintain power and living with an unrecognizable body. The bodies of women with MS serve as hindrances in everyday life. Bodily changes evident to others impose feelings of being met in a different way, which can be understood as an expression of a violated dignity. At the same time, the women with MS struggle to protect their dignity.

The psychological impact of the unpredictability of multiple sclerosis: a qualitative literature meta-synthesis

“…The main psychological impacts identified were perceived loss, isolation/withdrawal, and emotional distress. Sub-themes were identified within Shevil and Finlayson (2006); 2, Malcomson et al (2008); 3, Olsson et al (2008);4, Miller (1997); 5, Moriya and Suzuki (2001); 6, Koopman and Schweitzer (1999) these constructs. Table 2 summarises which of the papers were sources for these themes and subthemes.…”

“…Consequently, interest has grown in qualitative studies exploring the lived experience of those with MS and their carers (Miller, 1997;Koopman and Schweitzer, 1999;Cheung and Hocking, 2004;Shevil and Finlayson, 2006;Malcomson et al, 2008;Olsson et al, 2008;Mutch, 2010;Moriya and Suzuki, 2011;Vick, 2013). Unpredictability is one of the largest challenges in MS (Malcomson et al, 2008).…”

Living with Multiple Sclerosis: Perception and Coping

“…It is felt that being forced to accept the illness because of the frequent attacks in the past year had made T acutely aware and conscious of the predicament of the illness. She was perhaps going through a phase wherein she was striving to reconfigure her daily life in order to include the illness in her daily lives and identity, an aspect discussed by Olsson, Lexell, & Söderberg as well (Olsson, Lexell, & Söderberg, 2008). Her behavior reflected attempts to bring the illness out in the open spaces of the family and attribute a lot of ordinary daily life events and hassles to the illness.…”

Le processus de construction de sens dans l’adaptation à la sclérose en plaques

“…La perspective des personnes atteintes paraît la voie à privilégier pour avoir accès à l'expérience interne au quotidien et pour la comprendre dans son contexte (Craig-Lees, 2001;Olsson, Lexell, & Soderberg, 2008;Robinson, 1990). Or, la situation est rarement envisagée du point de vue de la personne handicapée.…”

“…(Miller, 1997). L'étude phénoménologique d 'Olsson et al (2008), conduite auprès de dix femmes atteintes d'une forme progressive de SEP, fait aussi ressortir une notion apparentée au contrôle, le pouvoir. Les auteurs rapportent que les efforts pour garder le pouvoir permettent de contrer l'incertitude, trouver la force de se battre et envisager des possibilités d'avenir.…”