You should get new knees, my husband’s got new knees and he’s fine now. This was from a lady I know only slightly so she can be forgiven for thinking I had arthritis. How long have you got? From a former colleague. It’s alright for you, you only have one illness, I have a lot, this was my whining neighbour who is actually pretty fit and on effective meds for her various ailments. My wife is wheelchair bound. My lovely, wonderful better half, but I wish he wouldn’t. I’m not, not yet anyway, even though I am very reliant on it when out of the house. They can do so much for ms nowadays. They can stop ms in it’s tracks now. All well meaning I know but the worst was soon after diagnosis eight years ago when a neighbour of my late parents declared, the good thing about ms is that you’ll never be depressed! Priceless!
It’s all in here, innit - my previous neighbour (tapping the side of her head). She looked taken aback when I yelled at her ‘I’m not mental’.
XX’s mum has had MS for 20 years, you wouldn’t know there’s anything wrong with her …
Oh, you should get extra money for that and one of those disability cars for free. (if only … and I don’t want to be bad enough to qualify actually)
There’s a woman in my village with MS and she can’t do anything for herself at all now. I’m not upsetting you am I? (It was my mum’s funeral, I was already upset! Some people don’t do sensitive clearly.)
It’s because of comments like the above, and yours Flowerpot, that I hold a Cake Break every year and leave leaflets about to try and educate people that MS comes in all shapes and forms. It’s also my way of giving something back whilst baking and eating lots of cake
Tracey xx
My worst comment was:
You are looking so well. Are you better then?
Grrrrr!
Shazzie xx
Unbelievable! Someone said to me when I first got my scooter;
I hope it wont make you lazy!
I replied with `I am hoping it will mean less pain!
Bless`em, the chuffs!
pollx
‘You are doing so well’
‘You look so well’
And when l am out on my scooter with the dogs l get - usually from the lycra clad cyclists - ‘Thats cheating’ or l could do with one of those.
l do make an effort to ‘tart myself up’ hair done,lipstick on. lt makes me feel more upbeat -and is the only way l can face ‘my public’.
I’m very fortunate to be relatively unaffected day to day at the moment, but someone who knew I’d had a pay out on my critical illness plan said, “wow, what a great situation to be in!”. Well actually, I’d give back every penny if it meant I didn’t have this hanging over me! And someone else said I must be “claiming disability” and getting loads of free stuff. Well, I’m not affected (yet) in any way close to being eligible for anything, but apparently that doesn’t matter, because I don’t work I must be claiming! (I am a stay at home mum through choice - with no benefits - and people find that very difficult to comprehend!)
Because my MS is very mild (long may that continue) and I still go dancing & to the gym, I always get - ‘well you don’t look sick!!!’
And poor Flowerpot, with people saying - ‘How long have you got’ - I would have told him - 'Longer than you with comments like that!!'
hehe
JBK xx
People say to me all the time, “stop drinking diet coke!, it will just make you worse”, mostly said by online friends.
My favourite, “Are you drunk??”, at 10 in the morning? don’t think so, I actually walk better after a few 
a doctor asked me what symptom or symptoms affected me most, i said ‘pain, definately pain was the worst thing’ she replied ‘oh no, PAIN ISN’T A SYMPTOM ASSOCIATED WITH MS’! and this was the doctor assessing whether or not my pension should be paid to me early. i was so horrified, all i could do was burst into tears. a few days later i spoke to one of her much better informed colleagues, who assured me he would make sure she knew that it is, very definately a symptom associated with bloody MS. to this day, i can feel my blood pressure rising just thinking about it.
as far as being told that i look well… it just depresses me, cos i look and feel about 70. i just had my 50th birthday, ho hum.
wendy x
Not sure Why I’m finding some of these comments funny, when i should be boiling!! People can be so ridiculous sometimes !!! HHere’s one fired at me constantly throughout my lifetime of illnesses and disabilities.
"…its not fair, you getting all this support and financial help…I wish I was disabled ! "
Yeah right … Xx
Yeah totally get it I get you look so well. You’ll have no problem finding someone, eh yeah whete at the doctors or if they miraculously just appear. It’s hard enough dealing with the kids lol never mind anyone else. Or are you better yet. Or my ex mum texting me the week after I was dx. ‘Hopefully they can manage your symptoms now’ I should have replied it’s not the flu.but just said yes well they apologied for dx stress and putting me to see a psychiatrist! I was fuming. I was tempted to ask if the nhs now supplied new muscles and. Nerves. Or the glowers I get when I park in a disabled space. and my ex this week asking is that really your hand writing. I could have punched him as I couldn’t even hold a pen 9 months ago. I could go on but I’m seething even thinking of them
Hi all,
The one that really gets to me is total strangers who ask me whats the matter with me because apparently I look too young for a walking stick (I’m 33) I didn’t realise there was an age limit, and also I was completely unaware that my health is complete strangers business!!!
One friend (who I have come to realise is not a true friend since Dx) said can you get me cannabis from your Dr now? Idiot.
Oh well you have to laugh…and grit your teeth through the pitying looks!!
Take care
BeckyX
The best one yet has been my sister in law telling me “that will put the jiving out of you” this was said whilst i was dragging myself into church, christian or what. This came from the fact that because i have been doing so well myself and hubby took some dance lessons needlesss to say they had to stop when a had a really bad relapse that I am still recovering from. I came home and cried but what hurt the most was the fact that she told me she was a lot worse because she had to have hysterectomy and I should count myself lucky its only MS.
Can also relate to the critical illness comment I was told I was getting money for nothing.
But we all carry on regardless
Missy
The best one yet has been my sister in law telling me “that will put the jiving out of you” this was said whilst i was dragging myself into church, christian or what. This came from the fact that because i have been doing so well myself and hubby took some dance lessons needlesss to say they had to stop when a had a really bad relapse that I am still recovering from. I came home and cried but what hurt the most was the fact that she told me she was a lot worse because she had to have hysterectomy and I should count myself lucky its only MS.
Can also relate to the critical illness comment I was told I was getting money for nothing.
But we all carry on regardless
Missy
I’ve had:
“Ah well, you’ve got to go of something, I suppose!” (from a neighbour)
“You mustn’t worry - I’m sure it’s nothing!” (from my then best friend,after I already had confirmed brain and spinal lesions and was just waiting for a formal Dx). Did she think brain lesions are a normal thing everybody gets?
And, not to me, but to my mother - from my brother’s gf, of all people:
“MS? I could get diagnosed with that if I kept moaning.”
I wouldn’t mind, but I’d never moaned. On the contrary, I’d placidly accepted it for years - trusting doctors when they told me they could find nothing wrong. Even when my feet went completely numb, I was all for going home and forgetting about it. Doctors had to persuade ME it was serious - not the other way around.
Tina
x
Oh, and I almost forgot,
From a colleague:
“Well, you’ll have to mend your ways NOW, won’t you?”
Mend my ways in what respect? Because I’m a bad person? Because I brought this on myself?
Don’t think so…
I am currently going through testing for suspected MS (have been for the last year), but I have already had some crazy comments… It could be carpel tunnel (when I have had tingling in my arms and legs) It can’t be MS because you would be in hospital by now Why don’t you try stretching (a comment from a colleague when I have barely been able to walk) It would stop if I went to the gym and ate healthily (I DID go to the gym and had to stop because of this!!!) It’s such a pain going through testing without a diagnosis, everyone likes to make up their own mind on what’s wrong with me… Ooohhh I hope it’s not a brain tumor!!! WTF… Thanks I guess!!! Best one so far… You have to stop drinking diet coke, it’s probably the aspartamine!!! I drink about 2 to 3 cans per week!!! Lol, suppose you have to laugh at their ignorance 
anybody else find that some people seem to think that needing a walking stick to get around means that we also need people to speak either loudly or slowly, i mean, i ask you!
wendy x
“why should you get holiday entitlement, you’ve had ages off sick” said to me, and to a colleague with a tumour in her spine. Yes, because when we were off sick we galivanted all over the world, doing cartwheels. This person even says disabled people shouldnt work because they dont have to do as much as “normal” people, yet the same disabled people if on benefits should go get a job… I find working with them harder than a “normal” person would as I have to put so much effort into not punching her.
My mum thinks it’s just because the fatigue is because I’m lazy or just bored. If I worked harder I’d get better. A miracle cure for us all ( I think not!) At work my boss asked if it had gone and the amount of people who thought that when I had my diagnosis of probable ms that that’s what I’d made up for myself . as for fatigue thing I got my own back on my mum who bless her, is in her 70s was saying " I don’t know what’s wrong ? I’m so tired" You should have seen my dad laugh when I said to her that perhaps she was just bored, she should do more! She does think that the ms will kerb my wild ways. This is cos I used to go walking! Oh the other one I get is at least it’s not cancer. Nope I wouldn’t want cancer either , but with cancer some types can be treated.