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Things not to say to us

1. I hope you get better. 2. Jesus will heal you if you just keep praying. 3. My neighbor Amy has multiple sclerosis, do you know her? 4. Yeah, but you’re not actually properly disabled, are you? 5. H-E-L-L-O! HOWWWW ARE YOUUU? 6. Were you born that way? 7. You don’t look sick to me. 8. How do you go to the bathroom? 9. Omg yeah, I feel you. I get so annoyed when the elevator’s broken. 10. Yeah it’s totally accessible, there’s just like, three stairs. 11. So, what’s the deal, with uh, that, uh, walker thing? 12. My friend is disabled so I totally understand. 13. If I was disabled I don’t think I could carry on living. 14. At least you don’t have cancer. 15. I wish I got a special parking space, you’re so lucky to get all those free things. 16. You’re too pretty to be disabled. 17. You are an inspiration. 18. Oh, you’re here. You must feel better. 19. Ugh, I wish I didn’t have to stand. 20. You shouldn’t drink diet coke. 21. OMG, this vitamin will leave you symptom free. 22. What did you do to get MS? 23. I heard a vaccine caused it. 24. Why are you dragging one of your feet? 25. Stop using MS as an excuse. You can’t feel that way ALL the time. 26. Oh, trust me, I know EXACTLY how you feel! 27. You need to get out of the house more. 28. Maybe if you exercise more. 29. Maybe you just need to try a little harder. 30. It must be lovely being at home all day living on benefits while the rest of us have to work.



@watsoncraig Thanks for the reminder 🤣



“At least you...” the number of times I’ve heard that, well meaning I’m sure but so frustrating and not helpful at all!!



Brilliant 😂 I love it when I’m told about someone who has been cured of MS...😉



Agreed on most counts, but, am I the only one who is pleased to be told I don't look sick? I don't really want to look sick! And always quite interested to hear about people who have got better ?



This made me laugh, thanks for posting it. I am on ocrevus too, and it is helping according to the MRI I am not getting any more lesions as my doctor told me. I use a walker which I am grateful for as my lack of balance is very clear.



That was great. So true, so typical



31. If you just ate this way and lost some weight. 32. I know someone who knew someone with MS and they were fine! You wouldn't even know.



I had one say “I once had it” when told I them I had MS..



‘You are tired’ I was told during a grievance process. Yeah, that’s right, I need an early night and I’ll be fine



My Doctor said, but your looking really good, after my diagnoses, and the first person to have ever said it to me ???????? I couldn't help giving him the look been diagnoses about 2 week now, i'm not new to this inconvenece, my mother had it, she made it to 55 i'm 53, I came into this world kicking and screaming I intend to go out the same way. One thing she did teach me (that stuck) is pause for effect dont worry about stuff you have no control over. but she didnt say stuff, she was more direct you might say thats my pearl of wisdom for the day, everyone have the best night they can. peace love and happyness to all you hold dear in your heart.



How about "I used to have that too" ;-0 or my cousin did but he ate "x" and it went away ;-0 You are on a roll today ;-0



I must admit i make a joke out of it, telling people having a disability has some benefits.. I.e getting my mobility car.. which i applied for the first time in sept, and i'm still waiting to hear on a delivery date :-z



Haha good for a laugh but so true, people don't even realize what they are saying. I really think saying nothing at all is the way to go, yup



Was it because of that back injury you had years ago?




I’ve had someone tell me “I know someone with MS that’s got it a lot worse than you, so you’re doing fine”




My friend had MS & took these tablets & is now cured




Have you been drinking?




What's wrong with your legs



31. I had a friend that had MS but she died.




How does your leg feel today




Theirs no cure , so ur gonna die with it




That comes and goes doesn't it?




I think uve gotten mental



I knew someone with ms and she crashed her car. Not the thing to say to someone who has recently been diagnosed. Also "we all get brain fog." Still doesn't really sum up the tiring physical and mental aspects of ms.



All these are things my husband says to me . I don’t talk about how I am feeling anymore. It’s a waste of time.



*if you just try ans be positive, youll feel much better! * like i dont fight this every single day in life 🙄😂




And you’ve got a really responsible job too!



I had a cousin with MS, and he climbed Kilimanjaro.




It's all the sausages and chips and junk food you've been eating. You must eat healthily




You’re doing ever so well



Are you sure?




You're so brave



Your so young with young kids!! And the best one by far you don't look sick 🙃🙂



My....has MS and she's absolutely fine.




By my uncle after being diagnosed “so you’ll be dead soon”



@SusieQ Lol I just got one like that this morning. My brother has MS and he just ran 20 miles. Gee that’s great but I’m not up for doing 20!😂




Someone said to me “OMG, My neighbour had that and ended up doubly incontinent....”. How do you respond to that ?!



@utopia63. So sorry to hear your story 😞. Me too...I don’t tell my husband anything either.



Are you Drunk? Was asked very early on before I learned how to compensate for lack of balance and coordination.




31. Comment from self-centred half-sister: But what about me?



Someone once asked me whether having sex with me could transfer if to him??!!!🙄🙄




So glad you posted this. I work in a clinical role in the NHS and even they don't have a clue! "Hello how are you?" is an off the cuff greeting. They aren't really interested in how you're feeling.




You're tired? I'm tired too. Perhaps I have MS'. is what my boss told me




I’ve heard vitamins will help or take away your MS, you’re tired, I’m tired too and I understand when they really don’t understand




We’d better not rely on you then




ANGRY AUNT: Don't tell your mother, say you sprained your leg.



The one I hate is: My friend had that but he/she is better now.




So & so has MS and she just retired after working over 30 years so there's no reason why you can't work!



From medical technician doing evoked potentials not long after diagnosed ‘MS, OMG, I don’t know what I’d do if I was handed a diagnosis like that. You are doing really well’. 😢 Neuro with my first MRI ‘The white marks should not be there look 1, 2.....10, 11.....20, 21 ...’ He glanced at my face shortly after than and stopped counting. 😱



31. Do you have to work, could you not just claim benefits.



Have you still got it?




“Don’t count on keeping your job...” said my boss when I told him of my diagnosis. I worked for a program that supports people with disabilities.




@Emms. That actually made me laugh out loud!!



When telling my best friend that I was worried about ending up in a wheelchair.......her reply...'Well if you end up in a wheelchair...you end up in a wheelchair'.....



your infusion is coming up - you will be better after that.




What did you do this weekend? What have you been up to? -- blank i dont remeber - i find myself writing notes pre calls so i can answer this question - wish it was asked closed - hope you had a fun/good/productive weekend




@watsoncraig. Hi this post has been brilliant. Instead of feeling sab, I actually found some of the comments so outrageous, I smiled. Must be our Scottish Gallows Humour. Thanks Craig. I'm moving back to Edinburgh from London soon, so hopefully will engage with others in the MS Clan soon.



A friend said 'I was going to ask you to be godmother to my new baby but I can't now.' Why couldn't she?!




Hope they find a cure soon...because they don't know what to say x



Are you drunk?




I've got one that's been said to me 'Omg I've got shakey legs! Do you think I've got MS like you?' *eyeroll*




I got the "are you drunk?" just months after dx, I was amazed at how quickly that came up. (At 11AM work meeting no less.)



Oh you can walk



Comment deleted.



You say you have MS but we don't see it. Perhaps i should buy you new glasses so you see my walker.



Im constantly been told I look to young to be Ill and using a Walker and I should give it back for someone who is ill to use i often say can you see under my shell and I’d love not to be this way but unfortunately I am. I get sick of the mucky looks off people cos I walk funny. And people telling me I look tired and I should get more sleep I wish




I’ve experienced and few of these and would love to know what response people have given. I was dx 2019 and I just don’t know how to react. I want to educate rather than standing not knowing what to say. One guy I didn’t know said (whilst looking me up and down) ‘oh really, you have MS? YOU really have MS?! Well, my Auntie had that and was in a wheelchair within 2 years so you’re not doing bad! She’s dead now like!’ And a friend of mine, only 3 weeks after being dx said whilst crying (for me 🙄) ‘god, you’re so brave! If I was told I had MS I’d kill myself! I honestly would! You’re a so so brave!!’




I had a neurologist once say to me ‘MS is a really good disease to have at the moment!! I must have looked shocked but he apologised for his choice of words and clarified that there was a lot of money being spent on research and new drugs being created every day. Other diseases were not getting as much attention. It made me count my blessings...many neuro diagnoses are progressive and others incurable but have little research $ assigned. I used to think I was a bit unlucky getting MS at 24 but when my brother died at 39 from a brain tumour I realised I was the lucky one!



You can get some really fashionable sticks now



“Oh I get xxxxx (fatigue/tingling/brain fog/stiff legs etc) too - it’s our age/menopause/normal...” Translates as “you’re not really sick, you’re just making a big deal of things and feeling sorry for yourself - man up!” Grrrr!



I found these comments very funny but also very sad at the obvious ignorance of many. I am surprised when a women comments how nice i look, compliments are usually welcome but when i respond with the question , "do you mean nice for a wheelchair user or do you mean in general, i would never comment personally to a stranger, it can be dangerous and then they see my stick..



Well so n so is still working why can’t you?!! Yes I would like to be but I’m sure falling into someone’s lap is just not appropriate. Or closing my eye to start a PICC line or IV would not be appreciated by a pt. Or family member!!



Oh I feel exactly the same - I sometimes go to bed at 5:30 when I am tired.



Oh my auntie died from MS



Worst comment was “so are you going to need a wheelchair soon?”



Why are you so tired all the time? You always fall asleep and say it’s MS fatigue. Just get up & move around, you’ll feel better.



@Rick_Bailey After thinking the shopping trolley at Sainsburys was great for support, I staggered going round the car after putting the bags in the boot the when I got home I was joined by 2 guys dressed in black carrying a breathalyser. A quick chat later and they said “Your NOT drunk, we won’t be breathalysing you, are you alright just now and can we do anything”, dusting wasn’t what they meant



I hate “Hopefully your meds will start working soon and you’ll feel better” 😞




I know someone with MS but they are a lot worse than you




Just after diagnosis- ‘will you still be able to work with children?’ 🤨And that was my own mother 😂



“Oh yes that’s what they used to call “yuppie flu” make you tired all the time “ .......🤦🏼‍♀️




I was told to pray the rosary. I was told to be a nicer person




Them: You look so well! Me: Well, last week I looked like Elle Mcpherson.




I'm hoping I'm not the first to shout this out, appreciate loads of fab replies - credit to Craig for this :-D … I have already added my things not to say to us heha --On reflection... Are we over sensitive sometimes? I wonder did we have an issue/matter/concern/opinion pre MS when someone asked us how we were doing or recommended a different way to live life? My narrative has learned not to take what others say/think personally - Others will and do continue to say and think how they'd like, whether due to malice or ignorance or etc -I tell myself, I am worth more than their time, I know my truth. I am happy to engage, educate and enlighten how my living with MS is, as difficult as that often is and I am confident to express in a positive way - ways that would suit/help/support/encourage/engage me differently that I would appreciate, be grateful and be thankful of. <3 .



Fatigue? me too after i've been to work....



I guess once you've had your treatment, you'll feel better



14. At least you don’t have cancer - my husband always says whenever we get into an MS discussion, and it makes me feel so guilty! I always find people want to find some common ground so begin to talk about people they have encountered in the past with MS - usually along the lines of "my aunts cousins sister had MS and she was in a wheelchair - will you be like that" Grrrrrr.......