The Lived Experience and Meaning of Living with Multiple Sclerosis: Suggestions from Anthropology for Policy Development
Kolodziej, Theresa Agnes
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This research was an ethnographic study of multiple sclerosis (MS) in Western New York State using qualitative interviews and illness narratives of 36 women and men, ages 34 to 72 who have been diagnosed with MS. Participant observation was carried out at support group meetings and other events attended by people with MS. The purpose was to study the participants' lived experience of having MS, how individuals cope with their impeded life course after illness strikes, and how others can facilitate them in coping and managing their way of life. These qualitative research methods allowed for a deeper understanding of the heterogeneous nature of MS, a disease that varies in symptoms and levels of severity. The narrative transcripts and field notes were coded for content and refined into consistently occurring themes and subthemes using a constant comparative analysis. Five predominant themes emerged from the data: influence on employment, power of positive outlook, time orientation, need for services and programs, and sense of independence. Each of the themes illustrated the influence of MS on the individual as well as on relationships with family and friends. Suggestions for policy development include changes at the local level of the National Multiple Sclerosis Society (NMSS), services of culture brokers within the MS community, public policy changes in the Social Security Disability Insurance process, and health insurance addition of maintenance therapy for chronic neurological conditions like MS.