Interview-based study describes how MS affects engagement in activities and changes self-identity

It's been said that "the only constant is change," and while this applies to everyone, it applies even more to people with MS. A study in the American Journal of Occupational Therapy describes how the effects of MS can change a person's ability to engage in occupations or activities they need or want to participate in. The study was based on in-depth interviews with 10 people with MS who described how their disease has limited their participation in activities, and how these restrictions have affected their self-identity. Continual change meant continual struggle for these people, and often resulted in a significantly different life.

Some of the themes emerging from the analysis include the following: Difficulties in performing activities, limitations in the choices available, and lack of ability to plan ahead each contribute to decreased engagement in occupations. The struggle to stay involved in activities is influenced by society (e.g., availability of social service support), by social interactions and attitudes, and physical restrictions such as fatigue. However, self-esteem is influenced by one's capability to do things -- and therefore incapability can lead to feelings of being a burden or a "nobody." Although some of the interviewees felt that restrictions on activities diminished their life, others hoped to regain some of their former activities in the future, or found a "silver lining" in their more restrained life, such as having more time to spend with children.

This article is addressed to occupational therapists who work with people with MS. The authors wanted their readers to understand the factors affecting engagement in activities that go beyond just the physical ability to perform tasks. However, it may also be of interest to people with MS or their families and friends in anticipating and adapting to changes resulting from MS so that engagement in meaningful activities remains a part of life. A full-text version is available here (try to ignore the ads...).