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Most ridiculous thing anyone has ever said to you about MS

I guess we’ve all had things that have annoyed us over the years that people have said to us, but I was wondering what was the most ridiculous thing?

I was once in a meet and greet drinks at work and a member of the charity team at my company came over to me (seeing I was in wheelchair) and in a blunt tone asked “What’s wrong with you then?”, so I told her I suffered from MS, her reply was “No you don’t only women can get that!”. Needless to say (I’m sounding like Alan Partridge there) I then put her straight that women are more likely to get it but men suffer from it too (and pointed out Richard Pryor and Montel Williams as two famous male sufferers).

I found it kind of ludicrous that someone without a medical background thought she was enough of an expert to say I didn’t know what I was talking about. Although I probably should have found it offensive (after all she was basically saying I didn’t have a clue or was lying) I did find it ridiculous to the point of it being funny at the time.

Anyone got any similar stories where someone has said something completely outrageous about their condition or the disease?

I don’t think I’ve ever had anything quite as bad as that, but I have had: “Oh, that’s that yuppie thing, isn’t it?” (presumably confusing it with ME), and (to my mother, not me - from my brother’s GF, of all people): “Oh, I could get diagnosed with that if I kept moaning!”

Mum was unimpressed, to say the least, and had the presence of mind to ask: “Why? Have you got lesions on your brain, then?” Honestly, as if you could get a Dx by moaning a lot! (And actually, I’d never moaned, but rather the other extreme of ignoring it altogether, until I literally couldn’t feel my feet, at which time I reluctantly accepted I had to do something!)

Then I’ve had: “Oh dear, how long have you got?”, and of course, the quack cures well-meaning people suggest - the top one there is being stung by thousands of bees (suggested by someone who’s no longer a friend).

Oh, and finally: “Well, you’ll have to mend your ways now, won’t you?” What? It’s not as if I was living some kind of debauched lifestyle in the first place, and it’s NOT a lifestyle disease - I didn’t do anything wrong! So what are the evil ways I’m supposed to mend? Damn cheek!

Tina

x

you’ve got to hate the flaming comments some people make. i think my worst is when a doctor (a medical one!) said, in a really mocking tone, ‘oh, no, pain isn’t a symptom associated with ms’ aaaaargh. good on your mum tina.

xx

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Well, my mum is quite a timid person, but even she won’t stand for her daughter, diagnosed with a serious incurable illness, to be dismissed as one of life’s whingers!

I’m guessing your doctor was quite “old school”, as it used to be believed - and taught - that pain wasn’t associated with MS! But I thought they were supposed to undergo continuing professional development to keep up-to-date with that sort of thing - not keep spouting stuff they learnt at medical school that has since turned out to be nonsense!

x

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this was about 10 years ago, i’d estimate her to have been in her 30’s then, so she really should have known better, i think.

x

Ooh, I forgot one:

“Are you sure it isn’t all in your head?”

(Well yes, it is actually - just not in the way that you mean) This was from a driver who was actually dropping me off at the MS clinic, at the time! Does he think I could actually get a diagnosis and be referred to an MS clinic if it was “all in my head”?

T.

x

Soon after my diagnosis a neighbour of my parents said, “The GOOD thing about having MS is that you’ll never be depressed”

That one is truly baffling, FP! Did they mean because you’ll be ga-ga and unaware of your circumstances? Bloody cheek!

T.

x

sometimes when confronted by these idiots i just smile and say “well i suppose i’m one of the lucky ones”

that’s if i don’t turn round and never speak to them again.

it’s that or letting rip with obscene language which i’m quite good at.

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hiya

‘dont get too close cos ms is contagious!’

oh-but that was said by me-not to me!

i have had ms several years and am fairly disabled now requiring carers.

however i always have been very open and honest with family/friends/strangers about my ms cos the only person i would be kidding/lying to is myself.

so my above comment may seem rather strange-cos its obviously a blatant lie BUT it stops folks in their train of thought and always leads on to a lightheartened convo about ms and how it affects some folk or me (cos we all are all different) and the detail i offer depends on who is asking. i see every conversation that i have with anybody is an opportunity to highten awareness-not just of ms but of how we are all so different. even in the early days i have never had anyone ‘be horrible’ cos i took on the role of educator one person at a time and didnt (and still dont) expect anyone to understand) simply cos they cant they are not me! i think expecting folk to be more understanding of what we are going thru is unrealistic and impossible!

comments by others are only funny/hurtful/offensive if u allow them to be!

its taken me over 10 years to fully understand that ms can take so much but it wont take my spirit! its tried several times but my mind is strong despite my carcass failing me.

have a happy day! ellie

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ha ha!!

reddevilade, that proves how stupid they are!

As a fairly newly dxd MSer these really made me smile. The two which stand out in my mind were the person who confused MS with ME (‘you must feel very tired with that’) and the other one (who I do know and so I was explaining to her that I have MS) who thought I said ‘I’m a mess’. True maybe, although you wouldn’t know it from looking at me (MS or mess!) but I resolved to actually use the words multiple sclerosis in full from now on.

Louise

i never used to swear a lot before ms, that isn’t true since about 2004, which coincided with my dx. hmmm

xx

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Apparently it was because when her husband did a stint as Mayor he “met lots of people with MS and they were always bright and cheerful!”

must’ve met 'em on a good day/putting on a smile for appearances or possibly on the happy pills!!

xx

i’ve got a bit of an overbite and it’s bloody hard to say ‘multiple sclerosis’ in full, but saying MS is bad enough and mostly seems to end up sounding like M 'eth. so i have a condition that i find difficult to ‘get round my teeth’. never mind.

x

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Louise - I used to say I have MS, but then started saying it in full and found I got quite a different reaction. Usually more responsible, but some folk now take me a bit too seriously and think I’m all but terminal, even when I’m looking fine, which is most of the time.

You just can’t win.

So should we carry leaflets?

Would they read them?

Would I remember where I’d put the things?

Like I said - you just can’t win, so it’s often best to just say nothing.

I did once accidentally say I had M&S, which got me a very funny look.

Ben

In the middle of getting dx I seen lots of doctors and one in particular wrote to my doctor saying I had convinced myself I couldn’t see my colours properly!!! (I had ON my first symptom) Then I found out he wasn’t a proper Dr yet and his work had to go through a real Dr who ordered a brain scan and found my lesions and gave me my dx!!

Is it true that jokes and things likely to cause merriment have been banned on the MS Society Folorn,sorry Forum?

Wb

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when i first heard that the powers that be had banned jokes, from another poster, i thought that they were making a joke, god my heart sank when i heard it was true. not a happy pixie don’t go wobly

Apart from the ME thing! I was asked “Why are you still laughing” my reply “coz I still have my sense of humour and no one can take that from me”

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