Saturday, 10 February 2018

MS Misconceptions

These are things that other MS-ers on Twitter have heard from friends/family/strangers, when it comes to MS awareness. (No, I'm not making these up... a lot of people simply don't understand what MS is, and/or how it affects everyone differently).

  • "MS is a little old lady's disease..." Nope.
  • "I read somewhere that there is a cure for MS!" No, no there isn't... yet... but there is plenty of ongoing research.
  • "You get MS from drinking diet soft drinks/Diet Mountain Dew..." This is a mind-warpingly stupid comment someone received - seriously!
  • "You get MS from using a mobile phone..." Nope, just your stupidity.
  • "If you have MS, why aren't you in a wheelchair? It can't be that bad?" MS affects everyone differently.
  • "You don't look sick...  you seem fine... are you just faking it for attention?" Can I punch you... lovingly?
  • "Awww, don't worry, your MS will get better..." No it won't, actually.
  • "How do you want me to treat you?" As you would want to be treated.
  • "Just take a pill, it will fix your headache/take away your pain..." If only it were that easy!
  • "Why are you poisoning your body [with medication] when you can go natural?" Why do you still eat processed food?
  • "Being high is a cure for MS." Medical marijuana is still illegal here, and it's not a cure, but can diminish some symptoms. Plus you don't get "high" from MM.
  • "Why do you have a disabled parking sticker/permit? You don't look disabled?!" Zark off.
  • "It must be great not having to go to work/being on the pension..." Thanks for making me feel like a worthless unproductive member of society...
  • "You seem so lazy!" It's nothing *&^%ing deliberate, believe me...
  • "Don't kiss/cough/bleed on me! You might give me MS!" MS is NOT contagious!
  • "How did you catch MS?" By talking with a twat like you...
  • "Oh, I get tired too..." Oh yes, that must be awful for you... moving on...
  • "Why are you so clumsy?" Just to annoy you.
  • "A good sleep will cure your weariness/lethargy!" I wish!
  • "Too bad you won't be able to have children/breastfeed, now you have MS..." Wrong.
  • "What did you do to get MS?" Absolutely nothing.
  • "What about your kids?! Isn't MS a genetic thing?!" No. No, it isn't.
  • "How could they [doctors etc] possibly find out you had MS?" They discovered a chicken laying eggs in my brain...
  • "I feel a bit sad sometimes too..." Depression isn't just 'feeling sad!'
  • "I know someone with MS, and they do things you don't..." MS affects everyone differently.
  • "How can you feel lonely?" MS can be a very socially-isolating disease.
  • "I forget things sometimes too..." If only it were 'sometimes' for me... like, mid sentence...?
  • "Why are you taking such-and-such medicine? You should take this natural/herbal..." I'll stick with my officially-prescribed meds from my trained, specially-skilled and medically-experienced doctors, thanks...
  • "It must be great experiencing drunk-like dizziness for free!" Zark off...
  • "Shouldn't people with MS avoid going to the gym?" Why? You can't catch MS!
  • "Haven't you tried such-and-such new treatment/magic cure yet?" No, because there's a lot of unverifiable outrageous crap out there, when it comes to people claiming to have "cured" MS, is why.
  • "Such-and-such a diet will help/stop/cure MS..." No, it won't.
  • "I knew a friend-of-a-friends'-mothers'-vet who died from MS..." MS won't kill you.
  • "I know someone with MS... it doesn't seem so bad for them..." No two people with MS share the same symptoms.
  • "That ringing in your ears is obviously caused by listening to loud music wearing headphones." No... no, it isn't, actually.
  • "Are you nervous? Why is your hand shaking like that?" I'm terrified I might clobber your ignorance out of you...
  • "When you talk about your MS, aren't you're just complaining/whinging...?" Perhaps I'm just raising MS awareness for the less-informed?
  • "Let me pray for you..." Gee, thanks, but words spoken into the air really won't practically help... could you come over and mow my grass or hang out my washing instead?
  • "Oh, you are just drunk..." Oh, I wish!
  • "Why couldn't you just get to the toilet in time?" No comment needed, surely.
  • "Vaccines cause MS!" No. No they don't.
  • "I hate hot/humid days/sudden temperature changes, too!" Oh, that's just awful [rolls eyes and sighs].
  • "Is your walking stick/frame just an attention-seeking device?" [rolls eyes] Oh yes... yes, it is... looks like you caught me out on that one... [sigh].
  • "But... MS is such a rare disease, isn't it?" No, it's not, actually.
  • "Why do you come across as such a smart arse sometimes?" Stoopid is as stoopid does... most poeple just don't care.

A list of things that should
NOT be said
to someone with multiple sclerosis (Source)
  • 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."

Article: 10 MS Myths

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