I’ve had comments from ‘ah(look of doom on their face), the fresh air’ll do you good’ And ‘well! You don’t LOOK ill’ ( from my mother in law,who incidentally has had everything ten times worse than anyone else in history lol) And, this was a belter ’ well, I had a mini stroke at work! I was back at work the day after!’ Deep breaths 
Some of these replies made me laugh. I think I might have a go at calling it now either M&S or S&M.
my favourite one was - ‘they only discovered that existed a few years ago, didn’t they!!!’
ME - MS - it was from an elderly gentleman so it was close enough for him!!!
JBK x
anything
In town, linked arms with hubby on one side and using my stick with other hand when stared at by an old woman who piped up “walking better than i can”…grrr…let it get to me causing me to say out loud “your welcome to my MS, I’ll gladly give it away”. Should have bit my tongue but…arrrgh!! The ignorance of people!!! Oooof!!!
My 10 yr old niece “why do u walk like a zombie” My introducing me as her daughter with ms A stranger coming up to me and asking “what is wrong with u?” My mum "cant watch the paralympics
My sister who is a nurse asking me several times over the years “Are you sure you have MS?”
Feeling like death and the “You look so well” comment
To many people who refer to others that they know who have MS but are so much worse than I appear to be, I now say
“You have to remember we are people and we are all different, how the disease manifests itself or progresses is different for every person”.
So often I have felt the need to justify my diagnosis by listing my symptoms but the fact that so far I don’t use a walking stick or need a wheelchair is to them a confirmation that I have been misdiagnosed. It makes me want to ask for a copy of my MRI scans to show these ignorant people the lesions on my brain!
I am fortunate not to be disabled but I am seriously debilitated, some days, good for nothing. I manage myself but would love a bit of empathy sometimes.
One of my oldest friends telling me she had a course of steroids like that when she had a sore throat and had to speak publicly! Really!?!
The dose we get of prednsolone is way higher than even the lealet in the pack says will be prescribed! I didn’t know much then as I was just being diagnosed and just changed the subject but I remember being uset by it.
Sonia x
Them that say “to look at you, you wouldn’t think there was anything wrong with you” grrrr
“Your too young to have a blue badge”…grrrr
“You look so normal” was one my future FIL wished he’d never said when I whipped round and bellowed at him. Idiot.
Not long after I was diagnosed, my superviser at work offered to get me a fold away stick like her SIL had. Hmm. Thirteen years later and have never had to use a stick.
And just in general, when people say “hi, are you alright?” and I go “yeah, good, you?” always because how much of a twat would I sound saying “no, not really, I have an incurable progressive illness - do you want to know what symptoms I’m experiencing today?”
I have to say one of the things at work that got said to me the most was “I forget you have MS” which is exactly what want especially as my MS thunder got stolen by another lady who was very, very bitter and made sure everyone knew about it. I almost felt like I couldn’t say anything as everyone was already so bored of hearing about MS!
This one has cropped up a few times recently - ‘I’ve heard that cutting out artifical sweetner can cure MS’ - or well-meaning friends sending me links to comments on Facebook about artifical sweetner with the message - ‘Are you sure you have MS’.
JBK x
I’ve had that. I just say “dodged a bullet there didn’t I?” - soon shuts 'em up!
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I thought you were playing up depression to get paid off (ex work colleague after my ‘redundancy’);
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“My colleague at work wears his Dads jacket because he (his Dad) died of MS”;
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What you need is to go for a swim in the sea;
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You’ll be ok then (thinking it’s ME).
ME isn’t MS. I know this because I was diagnosed with ME/CFS for several years, and because of that couldn’t get a referral to a neuro as every symptom ‘was ME/CFS’. When I had an ME dx I had no help and no support, but when I was diagnosed with MS I was overwhelmed by the support I was offered. Please, try to imagine how you would feel to have gone through all that you have and be treated as though it was psychosomatic…
I’ve had that too. My response is that I have never used artificial sweeteners (apat from rare occasions) so I don’t see how there can be a link in my case.
Tracey x
“Is MS the same as sleeping sickness?” “MS is the lazy man’s disease” “you’re very fat, you would need to exercise more or go for a run” “But you’ve got the good kind of MS” “there’s 3 or 4 types of MS and at least you haven’t got a bad one”
The list is endless with Joe Public…make’s you angry…The MS Society in Northern Ireland did run a bit of a campaign that stated that because you look well, dooesn’t give a true picture of MS…
One of my very good friends has been reading up on MS since my dx, and ever since, she keeps telling me how I have the ‘good kind’ (RRMS).
Delusional woman.
When I first mentioned that I was being investigated for MS, she obviously went away and did some ‘research’. The next time she saw me, she said ‘It’s caused by smoking isn’t it’ with a weirdly self-satisfied expression.
I have since quit smoking for the sake of my general health, but her words will stay with me forever. Like one of my very best friends was telling me I’d brought this on myself.
I have since distanced myself from her.
My neighbour firstly thought I was drunk when I had slurred speech as a first symptom. I thought she knew me better than that.
When I then had a confirmed diagnosis she then said ‘It’s all in here, isn’t it?’ tapping the side of her head. I shouted at her ‘I’m not mental!’ (Apologies to anyone suffering from mental health issues but I was cross and blurted it out without thinking.) She then replied ‘No, I meant it’s in your brain’. So I tried to explain it was in my CNS which was my brain and spinal cord and that by tapping the side of her head it seemed that she was trying to say I was imagining it.
Luckily I have moved so I don’t have to live with her ignorance on a daily basis any more.
Tracey x
“MS? There’s treatment for that, isn’t there?” gets me - I’ve got PPMS so there isn’t any treatment for the MS itself. It is especially irritating when said by someone I know to be one of those people who always has to be worse off than you are.
The other one that annoys me are the comments about MS being caused or triggered by glandular fever/childhood illnesses/whatever else. I’ve never had glandular fever, I haven’t had any of the “childhood illnesses” in over 25 years and there was no obvious trigger for my MS. None of the scenarios I’ve seen suggested fit my history.
I’ve had (from a former colleague): “Oh, you’ll have to mend your ways NOW, won’t you?” What??? As in: “You did this to yourself”? I wouldn’t mind, but I didn’t lead an exactly riotous lifestyle before. I wasn’t out every night, smoking and on the bottle, I wasn’t overweight, I ate a fairly balanced, mixed diet, etc. Also, not to me, but about me, to my Mum: “MS? I could get diagnosed with that if I kept whining!” That from my brother’s gf, who barely knows me - we’ve only ever met once or twice, and certainly not discussed health. I resent the implication I’m a chronic whiner - especially as quite the reverse was true. I’d ignored or played down symptoms for years, without trotting to the doctor’s every five minutes, demanding answers. My doctor was quite upset when she realised I had something serious, but had been - not complacent, exactly - but so uncomplaining! Tina x