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.
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