Tuesday, 31 January 2023

MS Misconceptions - Stupid Things People Say



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).

People often are sincere, but speak out of pure ignorance.


  • "MS is a little old lady's disease..." Nope.
  • "What should I call you? Disabled? Handicapped? Crippled? Gimp?" "Mal", thanks, same as my parents did.
  • "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/Diet Coke..." 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 seemed fine the other day... 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!
  • "MS is caused by eating red meat"  Wha...?!?
  • "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 (in Australia), and it's not a cure, but can diminish some pain symptoms for some people. Plus you don't get "high" from MM.
  • "Try this herb... it helped my cousin’s-uncles’-sister’s-friend who has MS." orly? Like I keep saying... every one with MS is different.
  • "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...
  • "It's all in your head!"  Funny you should say that...
  • "You seem so lazy!" It's nothing fvcking deliberate, believe me...
  • "Stop using MS as an excuse… you can’t feel that way all the time?!" Actually some days are better than others, but yes, MS is 24/7.
  • "Don't kiss/cough/bleed on me! You might give me MS!" MS is NOT contagious!
  • "Are you contagious?" I just told you... MS is not contagious... you don't "catch" MS.
  • "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...
  • "Maybe if I wore makeup too, I could cover up my fatigue."
  • "Why are you so clumsy?" Just to annoy you.
  • "A good sleep will cure your weariness/lethargy!" I wish!
  • "Oh, you're just having a 'bad day'..." Every day is different, that's what is so 'bad' about it!
  • "You need to think more positively!" I wish it were that simple somedays.
  • "My friend's, uncle's, window cleaner's, the next-door neighbour has MS and they are fine. Have you tried positive thinking??" (expletive deleted)
  • "Too bad you won't be able to have children/breastfeed, now you have MS..." Wrong.
  • "You should just exercise more..." It's different for everyone.
  • "What did you do to get MS?" Absolutely nothing.
  • Woman: Why are you limping? Me: I’ve got MS. Woman: Oh... as long as it’s nothing serious.
  • "A friend of mine has had MS for the last 10 years and you would barely notice. I'm sure you will be fine."
  • "Oh!  Sorry to hear that. My friend had MS once."
  • "How did you get that? You must’ve had Mono." Ummm... nope.
  • "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? How can they be so sure it's MS?" They discovered a fetid chicken laying scrambled eggs in my brain... that was enough evidence.
  • "I feel a bit sad sometimes too..." Depression isn't just 'feeling sad!'
  • "I know someone who has MS and she has an injection once a week and she’s fine."  [Rolls eyes] MS affects everyone differently.
  • "I know someone with MS, and they do things you don't..." MS affects everyone differently.
  • "Just push through it..." It's not so easy, when you feel like you're wading through treacle blindfolded somedays, physically and emotionally.
  • "How can you feel lonely?" MS can be a very socially-isolating disease.
  • "Why do you keep forgetting things?" I don't remember...
  • "I forget things sometimes too..." If only it were 'sometimes' for me... like, mid-sentence...?
  • "You daydream a lot in the middle of a conversation, that’s rude!" No… it’s cognitive issues.
  • "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...
  • "Why don’t you try a different medication, that doesn’t cause so many side effects?" A lot of it takes time to take effect, and it's different for different people.
  • "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..."; "A Keto diet will cure MS"; "A diet change would eradicate the smorgasbord of symptoms". No, it won't.
  • "You should be gluten/dairy-free." Thanks so much for that...
  • "OMG! This vitamin will leave you symptom-free! I read about it on the internet!" orly?
  • "I knew a friend-of-a-friends'-mothers'-vet who died from MS..." MS won't kill you.
  • “Do you have the kind of MS that you die from, or the other kind?” (See above!)
  • "At least it's not cancer". Gee, thanks...?
  • "I know someone with MS... it doesn't seem so bad for them..." No two people with MS share the same symptoms.
  • "I know someone with MS who didn’t need a wheelchair until they were 50, so you’ve got time yet."
  • "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/attention-seeking...?" 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].
  • "If the heat bothers you, don’t be in it… or move…" Oh yes, that's practically feasible...
  • "Wear fewer clothes if you are that hot..."
  • "You just need to get out more..." If only I didn't stumble-trip down the stairs, just checking my mailbox, then maybe I would.
  • "Yup all mothers are tired. You should get out more, like, if you're not feeling well... just go out and do stuff."
  • "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].
  • "Get a walking stick so people know you are disabled... because looking at you, you can't tell that you have MS".
  • "Why are you dragging one of your feet?" For the attention, obviously... don't you appreciate my Igor impressions?
  • "Can't you just walk slower/faster?" I wish it were that easy... or are you prepared to catch me if/when I fall?
  • "My legs hurt too... my legs get stiff if I've been sitting at my desk a long time." Oh dear, that must be awful for you...
  • "But... MS is such a rare disease, isn't it?" No, it's not, actually.
  • "Oh, trust me… I know exactly how you feel!" orly? That's nice.
  • "Aren’t you too healthy-looking to have MS?"
  • "Well, aren’t you taking your meds??" (Yes….) "Then, why is your MS bothering you still?"
  • "Well, if you’re in remission, why are you on meds?"
  • "Why are you always so tired? It can’t be that bad…"
  • "You slept ALL night, how can you be so tired?"
  • "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?"
  • "Maybe you just need to try a little harder."
  • (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
  • "It really can’t be that bad…"
  • "You are not praying enough" WAT?!?
  • "Oooo my husband thinks he's got that"
  • "Drink some silver solution" Ummm...No. that's actually toxic!
  • "Push through it... just walk it off"
  • If you say “MS” into the mirror three times, someone will appear and tell you their friend “has that, and she's totally fine” - @cindylocke47
  • “You know, I heard you can cure that with bee stings.” WAT...?!?
  • "MS is that ‘lazy disease’".
  • “Is that, like, back problems?” Ummm... no.
  • "Why do you come across as such a smart-arse sometimes?" Stoopid is as stoopid does... whilst most people have a good heart, they may just speak out of pure ignorance, but most people just don't care.


 πŸ’₯ Can you catch multiple sclerosis from someone that sneezes in your direction? πŸ’₯
by Penelope Conway
(Source: Last accessed 14 Feb 2020).

I sat across from a lady at Olive Garden that thought multiple sclerosis was a contagious disease and she needed to get away from me so she wouldn’t catch it. Far, far away. She even complained to a worker saying that they need to make me leave. How do you respond to people like that? At first I was stunned at the sheer lunacy of the thought that someone believed they could contract a chronic illness that destroys the nerves in a person’s body.

If I was thinking a little clearer at the moment I would have let out a loud cough, blew my nose into a napkin, turned around and grinned a bright shiny smile in her direction while letting her know that she needs to go home right away, take a hot shower, eat a bowl of chicken soup, take a handful of vitamin C, and cover her chest in Vicks vapour rub for the rest of the week.

I don’t know where people get those fear-filled ideas from. It would make a great comedy routine, that’s for sure. My friends got a kick out of it so at least I brought smiles to the table without even trying.

When I got home I was shaking my head in amazement that people like that actually exist. Some will never hear that their thinking is flawed. They are just adamant that they are the person filled with truth and know everything about everything. How sad.

Just as I’m not contagious, I can’t cure myself either. Yes, some foods help me to maintain a healthy body and foods that tend to trigger my symptoms. There aren’t many that adversely affect me but those that do, I try to avoid. No diet will cure you. All those with MS that change their diet to help, they are not cured. Even the die-hard dieter will tell you that their MS will still creep up and tries to ruin their day. Their diet isn’t curing them. They are just keeping a manageable life with an incurable disease.

Remember that this is your life. You are the one in charge of yourself. Enjoy life while you can and don’t let anyone take the reins. No cure doesn’t mean no hope.




πŸ˜ΈπŸ€­πŸ˜ΊπŸ˜€πŸ˜ƒπŸ˜„πŸ˜πŸ˜†πŸ˜‚πŸ˜œ



A list of things that should
NOT be said
to someone with multiple sclerosis

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 feeling, 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” into 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 every day with the symptoms that were caused by previous attacks."




Bookmark this page: MS Misconceptions


Peas be with ewe 
Mal


7 comments:

  1. Wow the same thing for fibro it is dreadful to hear people being so dumb on the subject of M.S truly*(((

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  2. I'd like to think that I wouldn't speak wrongly about any disease, but it is useful to to read many of these fairly basic things.

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    Replies
    1. Too right! It's a catch-22... people may be sincere but speak out of pure uninformed ignorance.

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  3. Brilliant blog. Thank you! I wish everyone could read it and learn from it!!

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  4. Remarkable. I love your entries. I would love for you to join our SWiMS group. We all have MS and our focus is on R&D and Scientific aspect. www.Societywithms.org 🧑

    ReplyDelete