MyMSTeam sometimes conducts surveys on topics of interest to our more than 200,000 members, inviting them to weigh in about their experiences. Most recently, we asked members questions related to their quality of life and how living with multiple sclerosis has affected them.
Below, we share the results of our member survey so our community can hear each other’s voices and learn, collectively, about how MS impacts quality of life.
The survey was answered by 629 MyMSTeam members living in the United States who had been diagnosed with MS.
Survey questions covered:
Here’s a breakdown of what MyMSTeam members had to say on these topics.
MyMSTeam members reported that MS impacts their quality of life in many ways. Seventy-eight percent said MS makes it hard to do everyday chores, while 74 percent said it interferes with their social life and 72 percent have difficulties getting around physically. Sixty-five percent of respondents reported MS disrupts work or school.
Mental health challenges were also widely reported, with 77 percent of respondents indicating that MS causes stress and 71 percent feeling anxious or depressed. Feeling judged by others is also a common experience, as reported by half of responding members.
Given the far-reaching physical and emotional impact of MS, it’s not surprising that 51 percent of the members who responded to the survey indicated their MS-related physical health is fair to poor.
Survey respondents also shared a determination to manage MS. For example, 76 percent reported staying on their prescribed medication, and 64 percent are taking steps to manage the impact of MS on their lives. Yet, more than half (54 percent) struggle to afford their MS-related medical expenses, which often involve being on multiple medications and having ongoing tests and doctor visits.
The large majority of members responding to the survey see either a neurologist who specializes in MS (68 percent) or a neurologist who’s a generalist (24 percent). The majority (64 percent) report being satisfied with their doctor.
Members who are satisfied with the doctor who treats their MS were much more likely to report positive interactions with their doctor. This included feeling their doctor listens to them, spends enough time with them, recommends regular check-ups, and addresses symptoms of MS — not just MS progression.
Despite the hardships members reported in the survey, some took time to share their views and a word of encouragement for others living with MS.
“I’m setting my intentions for the day and remembering not to be hard on myself,” shared one MyMSTeam member. “MS is still new to me, so I find myself frustrated a LOT when my body doesn’t let me do things. But having a positive attitude is key, and I’m not going to let it get me down.”
“There are good days, and there are bad days,” advised another member. “Don’t let them label you. Keep on walking, exercising, and eating healthy. Try to avoid stress, and get sunshine as much as you can. We all react differently. Positive attitude is the key for this disease — and never giving up.”
MyMSTeam is the social network for people living with multiple sclerosis and their loved ones. On MyMSTeam, more than 201,000 members come together to ask questions, give advice, and share their stories with others who understand life with multiple sclerosis.
How does multiple sclerosis impact your quality of life? What advice do you have for others? Describe your experience in the comments below, or start a conversation by posting on your Activities page.