“Sticking Jewels in Your Life”: Exploring Women's Strategies for Negotiating an Acceptable Quality of Life with Multiple Sclerosis

Abstract

This study explored women's strategies for living with multiple sclerosis (MS).Twenty-seven women were interviewed, most of whom had lived with MS for more than five years. Analysis of the semi-structured interviews followed the interpretative phenomenological approach. The women portrayed living with MS as an ongoing process of negotiation, and described gaining quality of life through looking after their health; maintaining a familiar self-image, particularly through meaningful occupations, and adapting pre-illness skills and interests to their changing levels of physical functioning; actively valuing positive life experiences, including finding benefits in adversity; clarifying values, priorities and philosophy of life; and maintaining mutual, caring relationships. Some regarded MS as presenting opportunities for personal growth. Without minimizing the very substantial difficulties that MS presents, the findings suggest that well-being derives from both managing the illness and also embracing life's wider experiences, including change and growth. Implications for rehabilitation and counseling professionals are considered.1 "Sticking jewels in your life": Exploring women's strategies for negotiating life with multiple sclerosis.

“It gave me something big in my life to wonder and think about which took over the space … and not MS”: managing well-being in multiple sclerosis through art-making

“…It had provided new opportunities to pursue different occupations, namely arts and crafts, in a 'new world'. This finding resonates with a previous qualitative study [9] in which women with MS described seeking out new meaningful occupations, that expressed long-standing personal skills and interests. These occupations provided fulfilment and helped them to interpret some positive aspects arising from having MS (whilst nonetheless acknowledging ongoing challenges within their lives).…”

“…Some participants describe filling occupational voids resulting from early retirement from work (on grounds of ill-health) by adapting pre-illness leisure occupations and social roles; others report reviving interests that had been kept on hold during their working lives [9]. These various strategies help to challenge the biographical disruption that chronic illness can entail (11).…”

Social-emotional aspects of quality of life in multiple sclerosis

“…Accepting MS and redefining boundaries in daily life as coping strategies turned out to be very important for those with MS, in our survey as well as in previous work (Hellige, 2002;Reynolds & Prior, 2003).…”

“…Maintaining a high social-emotional QoL should be a goal for those with MS and their social environment, as also shown by various other studies (Boeije et al, 2002;Charmaz, 1983;Grech et al, 2016;Irvine et al, 2009;Kralik et al, 2003;Madan & Pakenham, 2014;Reynolds & Prior, 2003;Rintell, Frankel, Minden, & Glanz, 2012;Strober, 2016). It appears beneficial to offer personalized interventions oriented toward unique needs of women and men to improve their QoL.…”

“…Most studies of MS have been conducted with women only, or have lacked the power to make gender comparisons (Irvine et al, 2009;Kralik et al, 2003;Reynolds & Prior, 2003). Themes that have arisen among studies of only women have revealed topics such as missing being able to wear high heels, potentially indicating a sense of lost femininity (Irvine et al, 2009).…”