Don’t Talk to Strangers (About Your MS)
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I had a short conversation with a person newly diagnosed with multiple sclerosis (MS) in the past weeks. They were very early in their processing of the news and, though I was being sensitive, I could tell I was oversharing. It brought back to me some advice I proffered in a piece I wrote back in 2019, called “10 Things I’d Tell Someone Diagnosed With MS in Their 20s.”
Much of the advice I mentioned was hard-fought learnings from my own experiences. Things like how to get and keep medical insurance, the importance of finding some “MS friends,” and how to find the right medication and medical team — all things that took me years to sort through.
My MS Isn’t Your MS
And there was another bit of advice I offered: Don’t talk to “the old ones”!
Why did I write that? Because being diagnosed today is different than it was when I was diagnosed, and getting diagnosed at 23 is different than getting diagnosed at 33, 43, or 53.
I was trying to be helpful in that recent conversation, and I know better, but I somehow slipped from “when you’re ready, I’m here to chat,” into some sort of unsolicited MS mentor.
It’s an obvious discomfort one sees if you’ve never experienced it — lesson (re)learned by me. But the newly diagnosed folks talking to the old ones aren’t the only ones who get a few scoops more than they were seeking (if they were seeking it at all). Few would be the hands unraised in a roomful of people with MS if they were asked had they ever had unsolicited advice or stories told to them about someone else’s multiple sclerosis.
Unsolicited Opinions Are Usually Unwelcome
Just as I cautioned those who were new to the game to stay away from the bad habits of the veterans, I’d have to advise all (and re-advise myself) to think twice before chatting MS with others. Unless, of course, you’re fully prepared for a trip down the other person’s rabbit hole.
Politics bled over into the world of health and science during the COVID days, and those stains can still be seen in the opinions and beliefs of many we might run into. While their rantings against vaccinations and health policy may be of no matter to me, I’ve no time to be told what someone thinks of me because of the disease with which I happen to live.
There are many unknowns about the disease MS, but one thing I know for sure is that it is a disease I live with, and that that disease is not the same as anyone else’s MS. I am not an expert on the disease, but I strive toward expertise at living my best life with MS.
And that’s a personal journey.
Discretion for All Is My Advice
For the newbies and the old ones, for ourselves and for those close to us, our experience of MS is ours and ours alone. I mean, while I live in the same house with my wife, Caryn, she doesn’t know the full extent of my experience, just like I’ll never fully understand what it’s like to live on her side of the MS relationship.
How in the name of it all would someone several degrees of separation from us have a shadow of an inkling?
I guess what I’m saying, in a roundabout way, is that all of us are well served by exercising a bit of discretion when talking about MS. Because we can’t always rely on discretion from those to whom we’re talking.
Wishing you and your family the best of health.
Cheers,
Trevis
My book Chef Interrupted is available on Amazon. Follow me on the Life With MS Facebook page, and read more on Life With Multiple Sclerosis.
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