I think we have all dealt with people making comments, or just doing something that is bothersome to us, when discussing our MS… or if it gets brought up at random… I’ve had some people tell me that I talk about my MS too much. Well, this was when I was first diagnosed and I was going through a LOT of changes, how could I NOT talk about MS a lot? But as time went on, and when I was having discussions with family, friends and sometimes-just acquaintances, there were things said or done that really bothered me and I had to bite my tongue and just nod and let it roll off my shoulder. So, just to vent, and hopefully provide something useful for others to consider when speaking to someone with MS, I’ve made a list of things that should NOT be said to someone with multiple sclerosis.
- You don’t look sick
- You shouldn’t drink diet coke
- OMG this diet cures MS
- OMG this vitamin will leave you symptom free
- Aren’t you gluten free? … You should be
- Aren’t you too healthy looking to have MS
- Try this herb; it helped my cousin’s uncles’ sister’s friend who has MS
- Well aren’t you taking your meds?? (Yes….) Then why is your MS bothering you still?
- Are you contagious?
- You shouldn’t eat meat…
- What did you do to get MS?
- How DID you get that? You must’ve had mono
- If the heat bothers you, don’t be in it… or move…
- I heard a vaccine caused it
- Can’t you just walk slower?
- Why are you dragging one of your feet?
- Why are you always so tired? It can’t be that bad…
- Well if you’re in remission, why are you on meds?
- If pregnancy makes it better, why don’t you just keep having more kids!
- That celebrity with MS seems just fine, why aren’t you?
- Do you take enough vitamins?
Are you sure it’s MS…? How can doctors be so sure?
- Stop using MS as an excuse… you can’t feel that way ALL the time.
- Maybe you just need to try a little harder.
- Why don’t you try a different medication, that doesn’t cause so many side effects?
- You seemed fine the other day…
- You slept ALL night, how can you be so tired?
- (This is for the younger MS’ers) WOW… you take more medicine than my grandma…
- MS… isn’t that the muscle illness? (No. That’s MD = Muscular Dystrophy)
- You daydream a lot in the middle of a conversation, that’s rude! (No… it’s cognitive issues)
- Why do you keep forgetting things?
- Oh TRUST me… I know exactly how you feel!
- Oh, you should just exercise more…
- It really can’t be that bad…
Oh… and when they compare how they feel or have felt in the past, with your symptoms… like it’s the EXACT same feeling…
Or when they just give you that “look”… you know the “real housewives” kind of look… nose in the air, scrunched up… Yeah that one…
I’ve come to learn that when some people (not all) ask how I’m doing… they are just doing it out of politeness… they don’t actually want to know how I’m felling, so I simply respond w/ the phrase we are ALL too familiar with… “I’m fine”
I could probably add to this list daily but I didn’t want to make the longest blog post in history! So while those of you are reading this that have MS are nodding your heads while you were reading, because you’ve been told the same thing before, I hope those that have a family member, friend or just an acquaintance with someone diagnosed with multiple sclerosis, take “the list” in to consideration. It’s not that we don’t enjoy people wanting to help out with their suggestions… sometimes it’s just nice to have support from individuals, and not their suggestions.
And I’ll just add this in there, this post is not meant to offend anyone or say that diet and exercise is something we don’t want to hear about… and that’s great if you’re on a specific diet that helps manage your MS… but I’ve heard too many times to count, “This certain diet will CURE your MS…” Well, the reason I disagree with that, is because I have a certain definition of the word “cure” when it comes to MS…
Cure for MS: Something that not only stops progression from happening in the future, but also reverses the damage that has already been done to my Central Nervous System. Even though stopping future progression is something we all strive for, we still have to live everyday with the symptoms that were caused by previous attacks.
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