What if MS didn’t have a name?

Something eye-opening happened to me recently that made me stop and think twice about how so much of my life and how I describe it to others revolves around the word/name/title “MS”.

A few weeks ago, my husband and I took our granddaughter for ice cream. She’s 4.5. As we all sat on a bench outside the shop, a boy around 5 or 6 approaches and spies my two trekking poles leaning on the table. He curiously runs his hands across the top of them and before I could even say hello, our granddaughter informatively says “Those are Gigi’s trekking poles. She uses them to help her walk”. I was so proud of her and loved the fact that there was no shame in her tone or associated with her description. Just facts. But, the description alone wasn’t enough for this inquisitive young man. He then asked, “But, WHAT’S WRONG WITH HER that she needs them to walk?” I took a quick deep breath and realized in that moment that we’ve NEVER used the word(s) “MS”, “multiple sclerosis” or “disease” to describe any of my mobility challenges to our granddaughter…not once. We’d NEVER given it a NAME or a title.

I was all ready to jump in and say something witty that might be enough to satisfy his curiosity but Liv beat me to the punch and very matter-of-factly says “Nuffin’! She’s just slow.” That was the end of it. He was satisfied. I on the other hand was awed by the simplicity of Liv’s response. Why? Because she’s right! I AM slow! To her, it’s not because I have MS, multiple sclerosis or a disease. I’M JUST SLOW!

It took a trip for ice cream and a granddaughter who has never known me as anything other than my current physical state to make me think about the times I and “we” as a collective refer to and/or associate our physical conditions with a disease.

Wouldn’t it be cool if we could mentally distance our symptoms from the overarching umbrella of our disease? Instead of saying things like “My MS XYZ today.”, replace it with X symptom…e.g.,”My balance is off today.”, “I can’t feel my toes today”, “I’m slower than normal today.” with no reference to MS at all. I think our mental load would be so much lighter if we placed more emphasis on the smaller bits of MS rather bombarding our brains with the constant reminder of “My MS…”, “Because I have MS…” To a stranger, so many of our symptoms could be attributed to a variety of ailments. Does it really matter why?
How many times a day do you catch yourself saying “My MS blah, blah blah…”?
Going forward, I’m going to mentally challenge myself to separate my symptoms from a disease. Because, ultimately, there’s “nuffin'” wrong with me. I’m “just slow”.😉❤️

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