Background: Despite growing understanding that African-Americans may have a more aggressive course of multiple sclerosis (MS) and experience disparities in diagnosis and treatment, fewer studies have examined how African-Americans experience MS and its impact on their lives. This study explored the experience of African American women living with MS in order to inform future research and practice.
Methods: Face-to face semi-structured interviews were conducted with 19 African-American women. Inductive content analysis was used to identify major categories and sub-categories.
Results: The analyses yielded three major categories: No one could believe I had MS; It's tough living with MS; and You have to keep going. Many women reported that the MS diagnosis was a surprise to them and their doctors because of the common belief that MS is a “Caucasian disease.” For this reason, many women felt their diagnosis had been delayed while their physicians initially focused on other diseases considered more typical in African-Americans. Living with losses related to social and family activities, independence and employment was especially challenging for them. Faith in God, coming to grips with the diagnosis and health promotion behaviors were key strategies for dealing with their MS. Women also spoke of pushing forward, working through MS challenges, and taking care of themselves, thus preserving their identity as strong Black women, a culturally important construct in the African-American community.
Conclusions: Future research should explore the interactions of culture with coping strategies and the development of useful and valued resources and supports for African-Americans with MS.