I hate that too. When I was diagnosed last year it annoyed my husband more than me. He used to warn people before they entered the house that we didn’t want to hear that…I could be cured by eating celery, horse poo or any other concoction, that they knew someones aunties friends neighbour who had MS and was ‘fine’, how well I looked, or about Jack Osbourne etc etc. All done with a smile of course!! 
This is so true , people say this all the time to me at work , I’m learning to let it go over my head. But sometimes I feel like giving a full explanation of symptoms I’m experiencing at that time - and sometimes do hoping they think twice befor they say it to me again . Hope x
The worst for me is when people say " but you look so well". Grrrrr. My reposte is usually " yes it’s amazing what a bit of slap can do as I actually feel rather cr*p". Perhaps I should stop wearing the make up, but it’s what helps keep me feeling a bit human.
Alison x
Completely agree about the makeup, Alison.
Yes, it’s important for morale, but somehow, if you still wear lipstick, people assume there can’t be much wrong. I’ve even had to explain to people before, that being ill does not mean wanting to go around in sackcloth and ashes, to emphasize how bad you must be.
Having said that, I’ve even had to justify having just one night out in months, as if someone who claims to be ill couldn’t possibly go anywhere or do anything. If I was out painting the town red every night, I can understand it casting some doubt on claims I don’t feel well. But just because I can self-manage well enough to have occasional, carefully-planned days or nights out, doesn’t mean I’m unaffected.
Even my dad, when he was dying, still had outings and holidays for as long as he was able. You don’t want to just give up and stare at the wall, do you?
Tina
x
My mother was the worst. She would spurt out all of the above. If I had leg spasm, she would have one 10 times worse. If. I had optic neuritis she would go blind for days. If my bladder was playing up… Se would,order me to the shop for towels. All in all,what I had was in my mind, what she had SHOUlD have been my only thought lol But to remember I was young ?? AND!!
It’s amazing how many people “know of” someone with ms. I guess by telling us how well they’re doing/how old they are etc they’re just trying to reassure us. I found it comforting (sort of) when I was first diagnosed but now I’m just bored by it. And then there’s the people who start talking about diet, aspartame, salt etc etc - as if I have ms because of something I have been eating all these years. The worst culprits are my mum and my mother in law. Constantly telling me how well I look and apparently my mums been telling everyone that I’m living life to the full “while I still can!”. Shouldn’t we all be doing that anyway, regardless of our health? After all, nobody knows what’s round the corner do they? GGGRRRRRRRR!!! Rant over…
my neighbour says she has MS, but when asked about detail etc she waffles, and its obious she’s lying, WHY???
I say ’ oh yes… MS is very common but everyones symptoms are different and most of them are invisible (symptoms not people!).
‘but you look so well’ I say ‘thank you’, but don’t return the complement!!
XX
Having a little chuckle at all of the above - we’ve all had those silly thoughtless comments from people. If I had a pound for every time someone said to me (even when I am sitting in my wheelchair) but you look so well I’d never know anything was wrong with you I’d be writing this from the patio of a villa in the south of france instead of from my rise and recline chair in my living room!! I totally agree with whoever said I just say I’m fine when asked because most people don’t really want to know and just glaze over or start squirming uncomfortably if you tell them some of the realities of how you really feel. My personal bugbear is people cutting things out of the paper or magazines about the next miracle cure! I always try to accept them politely but they always end up in the recycling unread these days I’m afraid.
When someone says “oh, you look so well” I say “well this is a good day, you shoud see me on a bad day” and that shuts them up fairly quickly.
I had a close friend (or so I thought) who made a big deal at a party and gave me a birthday present.
When I got home it was a DVD of “How to cope with ME”!!
some people just don’t listen…
M
My husband once told a friend that I’d stayed at home because of a problem with my nerves (I was awaiting diagnosis at the time) - his friend assumed I was agoraphobic!
I don’t usually share this in writing but I was once told an alternative meaning for fine and remembering it when I say it to someone makes me feel strangely better:
F…d up
Insecure
Neurotic and
Emotionally disturbed
However I tend to say I’m surviving - that usually makes people think.
Liz
And another answer (depends who you are talking to) is to say:
“Some days I feel like a dog - today I feel like the lamp-post.”
But thanks for redefining “fine” for us, Liz.
Geoff
hi all,
this thread has cheered me up and made me feel like im not alone in my frustrations.
Awaiting dx (so feel bit fraudulent) lesions on mri, 2 sep set symptoms, been told most likely ms ms ms and nothing else, awaiting lp, 2nd mri.
Anyway, since mid april ive been suffering bad spasticity that im only able to shuffle, foot drop, wall walk a few feet, (baclofen helping) and one girl at work knowing full well what ive been told said “maybe its restless leg syndrome, or possibly becasue youre wearing flats!” another classic "is its all in my head!! YEAH literally people thats the point, im not making this up.
I always thought if ever i was ill id be the gracious, non complaining type, but after all the Playing down of what a possible ms dx and my symptoms (many debilitating) by so called friends, im finding myself listing the problems to justify/explain my feelings! so sick of “my friend has ms,. and…” stories too. thats actuallly not helping. Some understanding and its s**t you’re going through this would be nice and supportive. Im not after sympathy or wanting peoples fuss, but if id broke my leg id doubt there’d be this get over it attitude. grrrrrr
If it turns out its all some infection or something and i get over it, I can promise to never be a non listener who assumes to know what ms-ers have to struggle with.
Thanks for this thread
Kel
x
Hi all, Nice to know its not just me that gets people saying idiotic things! Recent highlights include: Mother-in-law : " oh I’m tired today too, an early night and we’ll all be fine" Father -in-law “we’ll you’ve had a long drive, have a cup of tea and you’ll be back to normal” Work colleague “should you not start the injections again? They will stop all the symptoms” Random man in street " I’m going to report you to the police for parking in that disabled spot, you don’t look disabled at all" And my current favourite: " maybe you should just give up work. You’d be less tired and would probably get more in benefits than you do on your salary." Sigh… R
oh I forgot the worst
my so called best friend of 16 years who is a SOCIAL WORKER for stroke paitients; I think your symptoms are psycho symatic!
Are you kidding me!! Is that the advice you dole out to your stroke patients??..grrrr
To follow on from the “random man in street” quote, I was out with my husband the other week and was parked in a disabled bay in a supermarket car park with my blue badge and a guy commented with a “she doesn’t look very disabled” to which my husband said “looks can be disceiving, for example you don’t look ignorant, but you obviously are”
He got a hug for that one as he steadied me get to a supermarket trolly to lean on!
Jools
X
I agree mr H someone always says they know someone with it and they are fine,Even my auntie said it to me too when i mentioned about my hubby , it gets my back up ,all i can say is they must have beign ms as most people are not fine,Only a very very very small amount who probibly havent even got it just mis diagnosed lol, xx julie
mrs h sorry not mr lol spelling error
Thanks everyone - funniest thread I have read in years. The best comment by far was:
“A woman in the church said to me sullenly while shaking her head in sympathy, 'I had a touch of MS once, I know what it’s like”
(Pat - I spat my coffee out at that one).
Priceless
And we all know someone who has to better you when you mention anything. I had a work mate a few years ago we nick named “two sh*ts”. If you had one, then he probably would tell you he had two…
B.