When a loved one receives a diagnosis of multiple sclerosis (MS), learning how to support them is vital. To learn what type of support people living with MS most value, we asked the MultipleSclerosis.net community:
“What advice would you give to friends and family who want to support someone receiving an MS diagnosis?”
The community shared lots of helpful insights!
Listen and be supportive
Many respondents shared the importance of having loved ones simply listen and be supportive. Knowing they can express their feelings about MS without judgment or advice makes a big difference.
“Don’t make it about you, and don’t start conversations about the list of can’ts and won’ts. It’s unhelpful. Listen more than you speak. Presence is support; if it’s attending a yoga class or church together, that’s huge.”
“The best thing anyone can say to me is to ask me how I am and genuinely care enough for the real answer and listen.”
“To listen, not to always give some advice and give lectures.”
“Just be there . . . no words . . . just be there.”
Don’t dismiss symptoms
Another common response was to believe your loved one’s description of their condition. Do not dismiss or downgrade how someone with MS feels, and give them what they say they need. MS is often invisible, so how someone feels is not always reflected in how they look.
“Trust what they tell you. Believe in them!! No matter what it sounds like to you.”
“Never say, ‘But you look so good!’”
“Don’t downplay our symptoms by saying, ‘Oh, I go through that, too.’ It’s incredibly demeaning and invalidating.”
“Don’t tell them they use it as an excuse. Believe what you cannot see, be compassionate, and do your best to have a little understanding.”
“Give them grace when they have to cancel plans. It isn’t that we don’t want to do it; we are just exhausted and likely can’t.”
“For the love of everything holy . . . LET THEM SLEEP!”
Help with difficult tasks
Living with MS means that on some days, energy is severely low. Many tasks are challenging to complete. Offering concrete help for more difficult chores is helpful.
“Most don’t like asking for help, so if you see a need, do it if they can’t or if it can make life easy for them.”
“Respect their need to be as independent as possible as long as possible. Be in it for the long haul with them, and ask them how they are doing to see what you can do to help them.”
“If you offer to help, don’t leave it open-ended. Suggest areas you are prepared to help with.”
“My friends support me by helping me go to places that I could not go without help – driving me there or helping me when I am there.”
“Offer to help around the house, run errands, etc.”
Learn about MS
Another key way to show care for those with MS is to learn about the disease. Doing the work to understand how MS affects your loved one may help them feel supported and cared for.
“Do some research on the disease, even if it’s quick MS 101, and learn the basics. It means a lot to a person if a family member or friend actually learns about it instead of never looking into it.”
“Learn as much as you can about MS. Be patient, supportive, and encouraging.”
“When I was first diagnosed, the best thing anybody could do was show interest in learning about this disease. I can’t tell you how much it means when somebody says, ‘Hey, I was reading about such and such; what do you think?’”
“Learn as much as you can about MS. It’s so different for everyone. Listen, and don’t just think a warm bath does the trick, please.”
“Read up on the spoon theory. Understand that each activity involves the use of a spoon, and sometimes, we use too many and pay for it the next day.”
