Living with multiple sclerosis (MS) is a complex journey that can touch nearly every aspect of a person’s daily life. MyMSTeam aimed to discover the biggest ways the condition affects members’ day-to-day lives by surveying 928 community members living with multiple sclerosis.

MyMSTeam asked members about:

• The physical, social, and emotional impact that MS has on their lives
• The steps they take to lessen the impact of MS

In this article, we’ll explore the survey results and the ways MS can impact quality of life, offering insight and support for those navigating this challenging health condition.

Cognitive Challenges

The MyMSTeam survey found that MS affected members’ cognitive function the most, with 76 percent of respondents reporting changes to their cognitive skills. These changes can create unexpected hurdles in daily life. Studies show cognitive impairment can affect as many as 50 percent to 66 percent of people with MS. Symptoms include:

• Difficulties with memory and concentration
• Challenges in processing information quickly
• Struggles with multitasking and complex problem-solving
• Problems finding the right words
• Issues with visual perception, like double vision

Cognitive changes can impact work, social interactions, and personal independence. One MyMSTeam member said, “I know what I want to say, but I have trouble communicating because I lose my train of thought and botch things up. Sometimes I become frustrated, but I’ve found that writing things down helps me with what I really want to say without stumbling or struggling for the right words.”

More than three-quarters of MyMSTeam members say cognitive challenges impact their everyday lives.

Another member mentioned, “Try to find ways to keep your brain working. … You either use it or lose it!”

Always talk to your health care provider if you notice any changes to your cognitive functioning. Together, you and your neurology team can find the right resources and strategies to address your symptoms as early as possible. One MyMSTeam member wrote, “Every case is different, and there are a few ways of combating or treating mental decline in MS. An MS patient might want to take a proactive approach to cognition before they are behind the eight ball and noticing decline.”

Quality of Life Disruptions

MS doesn’t just affect physical abilities — it transforms how you experience your daily life. People with MS often report unpredictable symptom progression. Of those surveyed by MyMSTeam:

• More than half experienced reduced productivity at work or school.
• Sixty-three percent said MS creates challenges in maintaining social relationships with friends or family members.
• Fifty-five percent reported sexual difficulties.

“Acceptance can be the most difficult thing. Unfortunately, you must accept it if you want to deal with it. The pain, fatigue, loss of mobility, depression … the list goes on and on,” a MyMSTeam member wrote. “Life is an adventure, so try and be as positive as you can be. I laugh a lot more when I cancel invitations and keep telling myself whatever symptoms I feel will pass. Keep smiling!”

In terms of relationships, one member wrote, “Communication is key to a good relationship, which can be rather tricky at best sometimes. I am extremely fortunate to have a husband and family who care deeply about me and are willing to help me at a moment’s notice when I need it.”

“MS ups and downs are surely a big challenge. For every negative thought I have, I try to say two positive ones. I also took up guided meditation.”

— A MyMSTeam member

“Very few people in our circle know about my diagnosis of MS since there is such a huge variance in how MS affects people. Even in my own family there are misconceptions about it,” another added. “Having to retire was the worst — my social life and personal identity were tied up in my job and ability to work.”

Another member shared, “Personal experience has indicated to me that continual lifestyle activities, such as being active with your hobbies, and accepting mental challenges as they appear contribute to one’s well-being — without a doubt! This is your new normal.”

Physical Limitations

Everyday tasks that were once routine can become significant challenges when symptoms like fatigue and muscle weakness arise. The MyMSTeam survey respondents highlighted the following difficulties:

• Seventy percent saw a reduced ability to do household chores.
• Sixty-one percent had increased fatigue during physical activities.
• Seventy percent felt limited mobility and energy for everyday tasks.

According to the National Multiple Sclerosis Society, fatigue is one of the most common symptoms of MS, and approximately 80 percent of people with MS struggle with it. One MyMSTeam member shared, “I was able to do a few household chores today, then I quickly became exhausted, and now I’m going for an afternoon nap.”

“I’ve been fighting fatigue for years. Some days I do a bit and the fatigue jumps in to knock me down again, but other days, I’ll push myself to do a trip to the supermarket or maybe walk the dog, but the second I get home, that’s it, the fatigue hits me like a bulldozer,” another member added.

“I try to conserve energy wherever I can, however I can. If I can sit during an activity instead of standing, I do. It makes doing things easier for me,” a member wrote. “I always allow myself a certain amount of time to do something and try not to go over. This way I still have energy to do other things.”

Another member said, “I’m finding that I need to use a chair more often. I’ll stand as long as I can but inevitably end up sitting. Food prep is usually from a chair. Brushing my teeth tends to be seated. Currently, I use a cane when I go out of the house. Hang in and keep moving, everyone.”

To address mobility concerns, one member also suggested physical therapy: “Get referred to a physical therapist. It makes you feel better and can improve mobility.”

The Emotional Toll of MS

MyMSTeam members also shared some of the difficult emotions they encounter as a result of MS. When asked how much they agree or disagree with having a series of experiences, the majority indicated they feel stress, anxiety, depression, and a sense of isolation living with MS, all of which can have a major impact on quality of life.

Depression impacts as many as half of people living with MS, which is three times the rate of depression in the general population. In addition, a 2023 meta-analysis study found that about 36 percent of people with MS experience anxiety.

Depression is one of the top causes of decreased quality of life with MS, and it may lead to a worsening of MS symptoms, according to a 2020 study.

The emotional challenges of MS can stem from multiple sources, such as:

• The initial shock of diagnosis
• Uncertainty about disease progression
• Unpredictable symptoms
• Fears about the future
• Neurological changes caused by MS itself

To help regulate mood, one MyMSTeam member shared, “MS ups and downs are surely a big challenge. I have had my share in my 35 years of having this disease. For every negative thought I have, I try to say two positive ones. I also took up doing guided meditation every night and listening to positive affirmations in the morning. I have noticed my attitude has improved, and so have the people close to me.”

Another wrote, “I have found that turning on music instead of TV helps motivate me to get up. Once I’m dressed and feeling good from my music, I tend to have a better day.” Another member added, “I find music to be helpful also! Music tops everything!”

Up to half of people living with MS experience depression, which is three times higher than the depression rate in the general population.

Living with MS may mean you face unexpected changes to your quality of life, and it can take time to determine which symptoms may be related to MS and which aren’t. Having an awareness of the condition’s impact on your overall health is important. Talk to your neurologist if you begin noticing any new symptoms, including an effect on your mental health.

Remember, you are not alone in your MS journey. Joining support groups can help develop a sense of community and help you cope with both the physical and emotional toll of MS. You may also want to ask your health care provider about counseling options or additional resources that can help you maintain your quality of life.

Connect With Others With MS

MyMSTeam is the social network for people with MS and their loved ones. On MyMSTeam, more than 217,000 members come together to ask questions, give advice, and share their stories with others who understand life with MS.

How much does MS impact your emotions or daily activities? Have you found ways to improve your mood? What do you recommend to others who might be struggling with the impact of MS? Share your thoughts in a comment below or on your Activities page.