The Lived Experiences of Adults with Multiple Sclerosis

Multiple sclerosis (MS), a chronic, often disabling, nervous system disease, affects over 2.3 million people worldwide. This research examined the lived experiences of 46 community-dwelling adults with MS. We conducted five focus groups that covered topics such as diagnosis, decision-making regarding MS treatment, learning about and paying for assistance, and unmet needs. Focus group transcripts were qualitatively analyzed to identify overarching themes. Participants described how MS affects both current and future physical and financial security, how they often feel unheard or misunderstood by loved ones and healthcare providers, and how MS support organizations provide a vital collaborative and compassionate environment. Our findings reflect the importance of MS support organizations, and the incorporation of social workers in MS care teams, as they can foster communication and empathy between parties, provide psycho- social treatment, and link patients to needed services.