How to Be a Friend to a Person With MS

Anyone can bring a few meals and sit with a sick friend. But if you’re hoping to truly support someone with a chronic disease like multiple sclerosis (MS), you may need to go deeper.

The benefits, both for you and your friend, may be incalculable.

True friends invest the time and energy to understand each other’s lives. Making the effort to educate yourself about MS can be a meaningful contribution to your relationship.

You should know that multiple sclerosis (MS) is an autoimmune condition that impacts the central nervous system. MS occurs because the immune system attacks the myelin sheath, which is the coating that protects nerve fibers. The ensuing damage to the nerve fibers can disrupt communication between the brain and the body and cause inflammation and a range of other issues.

• Problems with vision or walking
• Numbness or tingling
• Heat intolerance
• Anxiety or depression
• Bladder and bowel dysfunction
• Dizziness, fatigue, or weakness
• Sleep issues
• Pain
• Brain fog
• Muscle spasms

There is plenty of hope for people with MS. “MS today is not what MS was back in the 1990s or earlier,” says Robert Shin, MD, a professor of neurology and ophthalmology at the University of Virginia School of Medicine in Charlottesville. “MS is now a very treatable condition, especially when diagnosed early and when highly effective MS therapies are prescribed before any disability develops. Early and correct diagnosis is the key.”

When Lucy Rendler-Kaplan, a Chicago-based consultant, finally received an official MS diagnosis four years ago, it was the culmination of years of tests and appointments that had taken up the majority of her twenties and thirties. She says that she is thriving thanks to a community of friends that have made the effort to better understand her condition.

“I’d love for more people to take time to learn about this disease,” she says. “As we see in the public, MS is getting more and more ‘mainstream’ as more people are being diagnosed, and more people are beginning to speak about their experiences.”

For people with MS, like Rendler-Kaplan, relationships are essential for:

• Social and emotional support
• Practical support
• A feeling of inclusion
• Countering loneliness and isolation

If a friend receives an MS diagnosis, you will likely have a lot of questions, and learning how to frame them in the right way is important. This starts with making yourself available for honest conversations about how your friend is managing their diagnosis, while still being respectful of their boundaries and independence. You need to remember that they might not always want to talk about their MS.

Damian Washington, an actor in his early forties, was diagnosed with relapsing-remitting MS in 2017. In the months leading up to his diagnosis, the New York City native became less and less able to walk down the street. Washington eventually had a fall inside his home, prompting his wife to take him to the emergency room. Doctors recommended he undergo an MRI scan, which showed lesions indicative of MS.

For Washington, the desire to talk with someone about his experiences depends on the type of relationship he has with that person. He says there’s a balance when it comes to what kinds of questions you should ask someone with MS — and times when you should not ask anything at all.

“Watch how close you are to the person,” Washington advises. If you’re only casually acquainted with someone with MS, he recommends waiting for that person to open up to you about their condition first before you ask them questions about it.

Nobody with MS expects their friends to be perfect when it comes to saying just the right thing. But it can be helpful to be aware of some general dos and don’ts.

Be Curious

It’s hard to go wrong when asking questions, provided you don’t push if your friend clearly isn’t in the mood to talk. But sometimes it’s more important to listen rather than speak.

“Just be there. Listen to the person anytime they want to open up,” says Rendler-Kaplan.

Be Empathetic

Validating what you hear and sharing that you understand can go a long way when you’re talking to a friend with MS.

Rendler-Kaplan says that in the past she was always an outgoing person, but that she has become less so as a result of her MS. She says she needs friends to recognize her for who she is, not who she was.

“Try not to continually remind the newly diagnosed person of how fun we used to be, or how active we were, or how much we did. Please try not to compare our current abilities to who we were the whole time you’ve known us,” Rendler-Kaplan says.

“Understand that everything we thought about our plan for our lives went out the window and it’s incredibly defeating and depressing, and there’s no timeline to help newly diagnosed people know when or if they’ll ever be able to accept their new normal,” she adds.

Don’t Use MS to Make Conversation

If you’re not a close friend, you may think twice about bringing up MS casually. “Don’t aim to pry in ways like, ‘Oh, I heard you have MS. How’s that going?’” Washington says. “This typically leads to a lot of surface-level questions, which isn’t best for people with MS. Since we live with it, our minds aren’t usually thinking about the surface-level things.”

With his close friends, Washington says, he appreciates when they ask specific questions that give him space to divulge the ups and downs of life with MS. “It’s not just, ‘How are you doing?’ It’s, ‘How are your symptoms going?’ Or, ‘I remember you saying your vision wasn’t doing so well last time. Is it any better?’ The more specific you can get with your questions, the better,” Washington says.

Don’t Brush Off Your Own Fears

You may be thrown for a loop if someone close to you receives an MS diagnosis. Paul Hokemeyer, PhD, a clinical fellow for the American Association for Marriage and Family Therapy and a graduate of the Global Leaders in Healthcare Program at Harvard Medical School in Boston, says that recognizing your own feelings around the diagnosis can help you be more emotionally supportive.

“We can’t be of help to the patient if we are ungrounded in ourselves and our fears,” he says. He encourages talking with people you trust, like a therapist, or even journaling. “Once we have gotten some stability around our own fears we are then grounded enough to help the patient,” he says.

“Provide the patient with the very same gift you’ve given yourself: a safe, contained space to process the raft of emotions they are experiencing,” he says.

Avoid Comparisons

Similarly, avoid comparing them to other people with MS. Hearing about someone else’s serious disability or complications can be frightening, while hearing what an easy time someone else is having might reinforce the sense that life is unfair — even if that someone else is your favorite celebrity with MS.

“Just because your aunt with MS led a full life to 80 and danced and traveled, that doesn’t mean we can or will, and comparing ourselves will always feel defeating,” says Rendler-Kaplan.

Keep Toxic Positivity at Bay

Your friend has already likely “counted their blessings” and maybe counted them again, so they don’t need that reminder to be positive or grateful. This can quickly become toxic positivity.

Sometimes it’s comforting to remind yourself of what you have to be grateful for, but when it comes to a friend with MS, just tell them how blessed you feel to have them in your life.

Also refrain from offering false assurances. “Don’t feel the need to tell your friend everything will be all right or maybe the doctors were wrong. Simply hold space for them to share the fragility of their humanness,” says Dr. Hokemeyer.

If you try to make plans with a friend who has MS, and they either decline the invitation or later cancel because of MS symptoms, respond graciously.

“Just understand they have a chronic condition,” Washington says, adding that MS symptoms like fatigue can make going out and about difficult or even impossible on some days.

Volunteering to help your friend is a kind gesture, but it’s worth remembering that for many people, it’s difficult to ask for or even accept assistance. So be sensitive in how you offer, and be willing to take no for an answer.

It’s entirely possible, for instance, that your friend’s “no” means they don’t need your help at that moment.

“Many people living with MS have minimal symptoms in between MS episodes, so they don’t need to be babied,” Dr. Shin says. “They can travel, work, enjoy sports … whatever they want, as long as we keep the MS under control. The best approach, in my opinion, is to treat people living with MS the same as anyone else, unless they request otherwise.”

Other advice includes:

• Don’t offer to do anything you can’t or don’t want to do.
• Always ask before assisting your friend with MS.
• Check in with your friend to be sure you understand what help they want and how they want it done.

As much as you want to help your friend with MS, if you start to feel that you’ve taken on too much or are becoming more of a care provider than a friend, it’s time to reassess what you’re able to do and have a conversation with your friend about it.

It might involve helping them find other assistance if you have taken on too much of a caretaker role, or feel you are moving beyond what a typical friendship might look like.

• Understanding the specifics of MS, including what it is and how it impacts someone, is the best way to help a friend with MS.
• You can help a friend with MS feel seen and supported by communicating with empathy while respecting their personal boundaries.
• Offer practical help without babying the person with MS, and be willing to take no for an answer.