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What Not to Say to ME With MS, and Why I Sometimes Feel Like a Fraud

I know we have an invisible disease, but if there is anything that bothers me, it is somebody commenting on my symptoms. You can’t even see my symptoms! What are you talking about?!

"Do you really need that crutch?"

Let me back up a little bit. A friend at church and I were wandering the halls picking up some storage containers I had left in the kitchen. I make pimento cheese sandwiches for our church to serve at the receptions after memorial services, and I have to remember to pick the containers up after the service. So anyway, there I am trotting along with my trusty forearm crutch and my friend says to me, “You’re walking really well today! Do you really need that crutch?”

Wait a minute. Of course I’m walking well! I’m using my forearm crutch! It reminds me where my left leg used to be, and if I know where my unresponsive left leg used to be, I’m going to walk confidently. And I spend a fair amount of time exercising and using my unresponsive left leg.

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My mind needs to carve new pathways, because MS obliterated the pathways normal people use to walk. If I don’t use the crutch, I'll wander all over the hall, walking into my friend, the deacon on the welcome committee, or overturning the display case of previously heard sermons.

MS is not a one-size-fits-all disease

I HATE when people ask me about my mobility aid. I feel like a fraud most of the time as it is: I have had multiple sclerosis since 1978, even if I haven’t had an exacerbation for fifteen years. I know where all my scars are, and they make life challenging enough without my having to justify my need for a modest aid to keep me from falling off the edge of the earth.

But what really makes me feel like a fraud is that my MS is so quiet. I used to be able to hear it on quiet nights, making soft munching sounds as it nibbled on my myelin without interference from a disease modifying therapy for the first twenty two years I had this disease. I started using Copaxone in 2000, and with one spectacular exception, MS has barely raised its head above water for the last twenty three years. There are people who really respond well to Copaxone, and in the last year, I’ve found out that I’m one of them. Wild that a first line therapy would still be so effective, but that’s my story and I’m sticking to it.

I think about so many members of our community whose MS puts them through the wringer each and every day, with seizures, paralysis, and the thousand natural shocks the flesh is heir to, and then I remember: this is not a contest. This is most assuredly NOT a one-size-fits-all disease. We each and every one of us has a set of symptoms that can change in an instant. We never really know what’s going to be on our plates on any given day.

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We're fighting invisible battles

I can't think of a comment anyone other than the person’s physician or physical therapist could make on someone else’s body that would be helpful. Just don’t talk about other people’s bodies at all, especially not mine. We have no idea what people are going through, and believe me, you don’t want to know. We are all fighting invisible battles all the time. Just smile when you see me, okay? That’s all I ask.

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