When I was going through the whole MS diagnostic process, people said the strangest (and hurtful) things to me.
It was hard enough coming to terms with MS, far less finding smart replies to insensitive comments. Everyone has an opinion and they can’t wait to give it to you.
Even after diagnosis, the comments still keep coming, perhaps because MS is, for now, a mostly invisible illness for me and trying to convey the symptoms to other people is as difficult as counting brain lesions without an MRI.
So here’s my handy print-out-and-keep list of what not to say to someone with MS. Give it to all your newly-diagnosed friends to prepare them for the onslaught and before long, they’ll have ticked every one, several times over:
- You need to stay positive.
- You’ll be fine, they can do wonders these days.
- My auntie/friend/great-uncle Billy had that, and they’re great now.
- When are you giving up work?
- I’ve heard Diet Coke and chewing gum can give you MS.
- You get to sleep a lot? Wow, great symptom, wish I had that.
- Hey, it could be worse.
- But you look so good!
- If you get a blue badge, can I borrow it?
- Have you tried (insert any number of miracle cures here…)?
- You’re so brave.
- You’re cancelling our evening out…AGAIN??
- At least you don’t actually look disabled.
- You’re not using that old MS excuse again, are you?
So what should they say? Best piece of advice is not to presume things, just ask me questions. Ask what it means to me and my life. Everyone’s MS is different.
And if you don’t know what to say, say nothing. Just give me a hug and crack open the chocolate….