How to Talk to Someone with MS

In MS, Multiple Sclerosis on April 28, 2010 at 11:59 pm

It’s amazing when you receive an MS diagnosis–friends and family rally to your side and you receive dozens of phone calls from people wishing you well. Of course, they have only the best intentions, but you may start to record your responses because all the conversations take the same course:

“How are you feeling?” says Aunt Sophie, your neighbor Angela, your college roommate Lisa.

“Not so great,” you blather, hating to lie by saying, “Fabulous! Like I can run a marathon!”

“Oh, I’m so sorry to hear that,” replies your Uncle Larry, your book club leader Jenn, your cousin Steve.

“Thank you,” you say–and you really mean it.

“Well, you’ve just got to stay positive,” says the chorus of reassurance.

“Yes, I know.”

“When does the doctor think you’ll get better?”

“MS takes a different course for everyone, so he can’t say.”

“Well, you’ve just got to stay positive,” they repeat.

“Yes, I know.”

“Hey, I have a neighbor/niece/in-law/lady at the dry cleaner/friend-of-a-friend’s sister’s cousin’s ex-wife who has MS and she’s doing great. You’d never know she had it. And she’s willing to talk to you.”

“Thank you, I’ll think about that,” you say, noting this is the 27th offer you’ve received to talk about MS.

So let’s stop the conversation there.

Folks, the person with newly diagnosed MS wants to talk about anything but MS. Sure, it’s helpful to have an MS mentor–and chances are, your MS’er has already reached out to someone. But the MS patient doesn’t want to speak to every person that comes forward. A small support group or one confidant is probably enough. We’re not keen on calling Phoebe’s French Cleaners and asking for Millie to shoot the breeze while she starches collars.

We have MS. That’s a fact.

But we also have a rich, full lives: occupations, spouses, children, pets, religions, hobbies, adventures, loves, dreams.

We’d like to talk about life. Not MS. Because MS does not define us.

So if you have a family member or friend recently diagnosed with MS, take note. Please don’t call once a week with the standard, “How are you feeling?” routine. Call just to talk.

It’s great to hear your voice.

  1. THANK YOU!!!! That rocked! It is soooo true. 5 years post diagnosis and I still get that question. It is so frustrating and exhausting to answer, it leads into what seems to be a never ending conversation about the disease, the symptoms etc.

    You are so right when you talk about how MS doesn’t define us. It seems that when you are diagnosed with it, people want to make it who you are. I work so hard at trying to go on with life and this question which appears to be benign and attempts to be kind, does the complete opposite. That innocent question only reminds me of what the MonSter is trying to steal from me.

  2. […] read the article here.  If MS or any other circumstance for that matter,  is a part of your life, this article will […]

  3. I understand what you are saying but I remember wanting to talk to everyone and anyone about MS after my diagnosis in July of 2006. I especially wanted to talk to the very active MSers to pick their brain. I wanted to see if there was another explanation to why they were doing well, besides, “everyone has a different MS experience”. I agree that MS does not define us – I am just always looking for ways to make sure it never does.

    Thanks for your blog!

  4. That’s why I never tell anyone except my immediate family that I have MS! There are simply too many misconceptions out there. Define yourself, don’t let MS define you. And do what you can to stay healthy.

  5. Hi @humorms – I’m sorry to have misread your tweets and this long form blog definitely better explains your point of view – after 7 years of having MS I finally started talking about but I’ve been lucky for the most part to have friends who approach the subject well with some exceptions of course… My uncle said “you’re going to be crippled son” as I was trying to be positive. It was simply his style. Anyhow it’s also important for us to educate those that think like my uncle because I still get surprises that I walk just fine… Doesn’t change my bad vision or that slight weakness and buzz feelings. I appreciate your brave attitude to start thus blog. See you on Twitter.

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