Last reply 1 year ago
Worst comments from non MSers?

Ok, so we can sympathise and forgive other less-informed people when we talk about our MS condition and symptoms. Sometimes, however, insensitive comments can hurt. I’ve listed below a few I have experienced. What has been your experiences and how have you dealt with it?

You look great, you don’t look ill … (rather than asking me how I feel)
At least you don’t have cancer!!!
Do you still have it?
On explaining some symptoms… me too!

Knotty xx

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Anonymous
1 year ago

‘Why not?’ said in a challenging way, when someone asked me to do her a favour (fully knowing my dx) and I tried but my hands wouldn’t cooperate, so I handed it back to her saying ‘sorry, I can’t do this after all’. How did I deal with it? Ran to the toilet and cried!


potter
1 year ago

Nothing is going to happen to you, you won’t have any problems with your MS. Why on earth would someone say that, you wouldn’t have been diagnosed if you didn’t have problems already. Do they imagine a doctor said to you during a check up “by the way you have MS”. Potter


ss17
1 year ago

‘You can be treated for it though can’t you’
And then when I explain that there isn’t a cure…’but you take medication and surely they’d have a cure for it’
Yeah sure there is I’m just making it up cos i like injecting myself.

Oh and similarly to the cancer one when people grade and compare it to other conditions, for example ‘look at so-so whose blind he does so well dealing with that, you’re lucky compared to him’…so many times I’ve wanted to just scream yes I know that but my MS can affect my vision as well as most other parts of me at any time, so I have to live every day with that constant worry of when a relapse might happen and what it could be like whilst managing day to day symptoms – that’s really lucky isn’t it! So far I haven’t done that though as my way of coping is to just try to avoid the conversation.


tcarr4151976
1 year ago

I especially like the one’s from family member who decree “you just have to TRY HARDER” of course this is smack the middle of a Virginia Summer. 90 degrees with a heat index of 110. I feel like SCREAMING at them, It is taking all the effort that I have to stand up.


cietux
1 year ago

When i was first diagnosed, my hospital roommate was convinced that it was all from learning mathematics. All these calculations damage the brain he said. 🙂


tcarr4151976
1 year ago

Another one I get is “I know Just How you feel, I get tired too” I often say “No you don’t.” I internally laugh at what I refer to as civilians (Non MSers) in that they won’t ever get it. My Father who I consider the smartest man I ever knew in real life (He got his DVM in 6 years,) he kind of gets it. He does homework and goes to the events that the pharmacy companies have for non patients.


tcarr4151976
1 year ago

Wow who KNEW it was MATH? Ha ha.


cocofloyd1
1 year ago

All of the above but I think the one that hit me hardest was “oh a girl at metafit has that and she’s fine goes to all the classes” I think it hurt the most as I felt like a failure/making up symptoms as before I was really fit walking up to 10 miles a day and when comment was made I literally couldn’t walk down my hall! I just think people just don’t understand if they’ve never experienced it.


cietux
1 year ago

“I know Just How you feel, I get tired too”…
I also get that a lot. There is being tired and there is being MS tired.
It’s different, but i guess its not easy to explain.


thatlukebloke
1 year ago

One of my best friends bought me a “Get well soon” card, but was stopped from giving it to me by another friend just in time!

One of THE BEST reactions I’ve had was actually from a member of public who stopped me in the middle of a local shopping centre to ask me what was wrong with my leg (I was suffering quite badly with Foot drop at the time)
Me: “It’s MS”
Lady: “Oh, it is rather, isn’t it!?”
Me again (trying really hard to stifle a huge laugh, realising that she thought I’d said “It’s a mess”): “Yes, all brought on by multiple sclerosis!”


juliam58
1 year ago

I was told to try ” healing” before conventional medication. I shut them up very quickly and it hasn’t been mentioned since thank goodness!


al2010
1 year ago

I’ve been told that I should start going to a chiropractor, they can’t fix all my symptoms with regular adjustments.
Also been asked several times if I’m sure I was properly diagnosed, surly I have something else. As if I liked having all the testing, needle poking, digging around to find my runaway veins and all my doctors are stupid having no clue what they are talking about.
It really gets to the point where I don’t want to talk about it, it takes to much energy to explain it all, especially when what I say is immediately dismissed because the other person “knows more than the doctors”


barryb
1 year ago

@potter haha that was basically what the neurologist said to me when he diagnosed me, “oh, did no one tell you? you have MS”


caromawer
1 year ago

People come out with such a lot of bull* !
Everyone I say anything to knows tell me they (intimately) know someone with MS
There’s Option 1: incontinent, bed bound, dementia … How, I try (not very hard) not to say, is that useful / cheerful etc for me
Or Option 2: their friend has had it for ages, no problems at all. Ever.
If there was an emoji for these people looking at me thinking ‘you’re such a skiver’! – this would be the time to use it.
Then there are the many people who seem to think that after I got my diagnosis, I also got a bar on looking at the internet or speaking to anyone who is medically trained: ‘Have you looked it up?” they say.
And then tell me about various ‘nature’ ‘cures’ – my fave of those involved soaking almonds from some exotic place in some exotic fluid
But my super-favourite involves me telling someone about all the ‘me too’ people. I told them that even if I said I had run off with a Maasai tribesman, then … and i got no further, because the person I was talking to interrupted me: “But my aunt rely did run off with a Maasai tribesman!”


potter
1 year ago

Barry your neuro is even funnier than mine, Caromawer that is a riot, I wish I had that story to tell. I can dispel the math myth causing MS. I am terrible at math, I only made it through College Algebra because I memorized it. I am good at art maybe that’s the cause? Potter


mrnosey
1 year ago

My most jaw-dropping moment so far was from a friend of the family who is very active in the Catholic Church. She told me (to my face) that it was ‘no surprise’ I had MS because my father had been a Freemason, and I should see a priest to get it ‘prayed off me’.

I said I’d think about it.


maloumalou
1 year ago

Years go when I was first diagnosed my partner struggled with denial made worse by misinformation/hearsay etc. After a day out and about my legs were stiffening up and I was getting extremely tired. When we got home my partner pointed at my Converse in the hallway and shouted in frustration “IT’S THE SHOES…IT’S THE Bl***Y SHOES”. He then picked them up and threw them in the bin! I can shake my head and laugh now but…

Partner knows better now. And I did fish those innocent shoes out the bin.


vstsr
1 year ago

I can totally relate to all those comments, I’ve had the well you’re not relapsing now and at least you’re on treatment (Yes coz that’s a cure lol) and everyone always knows someone who had MS like it was a cold then went away.
The other day the most hurtful comment I got was if you’re like that don’t you fancy quitting your job and going on disability. (That one had me running to the toilets and crying)


mem2696
1 year ago

The one I hate the most from others ‘I had a family member that had MS and died’ really? Glad you knew family member so well

I call this the ‘what planet are you on’ response.
Almost everyone who discovers you have MS instantly responds with ‘oh I get terrible backache or hayfever etc.’ apparently it’s called a deflection response but it’s clumsy and offensive in equal measure.

It gets worse when people who seek you out to tell you all about their latest illness.
… and people wonder why we often hide our MS!

christine


jofamof5
1 year ago

I was having a conversation with 2 of my sister in laws, one is a RN and is very helpful and she’s my best friend. The other one drives me crazy. She says to me you know it is not a death sentence people live a long time with MS. You just need to get up and move do not just sit around with self pity. Seriously? The only thing that came out of my mouth is I have MS. I can hardly move I walk with a cane I’m in a middle of a flare up right now. I try to walk around the house as much as I can and then sit I’m not giving up. I’m not lazy I work full time and I have a family. She called me the next day and was sobbing uncontrollably I could not understand her and says a bunch of inspirational quotes and asked if she could do anything for me. I said Yes quit being an ass and hung up.


purl2
1 year ago

I guess we’ve all been on the receiving end of various ‘advice’ – I have Primary
Progressive and use a walker for every step I take, so I can’t hide anything.

One day I was in my health food store shopping for my veggies and fruit when the guy behind
me on the long checkout line asked about the walker – and like a fool I told him I was dealing with Multiple Sclerosis… he then told me – quite emphatically – that I should be eating RAW meat. Yup, RAW. I’m sure I looked aghast when I told him I didn’t think I could consume uncooked chicken, but he insisted I check it
out. I didn’t.

This in the exact same store where I was accosted at a different time by husband and wife vegans I’ve seen at the store often, and they’re both nice people. The wife is convinced that if I lived in her house for just a month I’d be all better – YOU NEED TO DO THE MASTER CLEANSE – and live on raw veggie juices!!!! WHAT ARE YOU WAITING FOR??

The most hurtful was from someone I’ve known for years who thinks (or has maybe now changed their mind) that it’s all in my head – and has dropped the word PLACEBO on me more than once. That positive thinking – or at least finding just the right thoughts always works and apparently I’m not doing this the right way.
(And I’m a meditator!)
As usual – my fault.


janshaw
1 year ago

On meeting an ex colleague who I had worked with for some years. I told her about my experience with my MS diagnosis which was some years earlier, and how traumatic it was and having to take medical retirement, living with the symptoms etc. Her comment was, ‘But you are ok though aren’t you’. I was gobsmacked! But the majority of people who have no experience of MS know nothing about it and don’t really want to know either. I changed the subject, because I get fed up trying to explain it!


msagain
1 year ago

While watching the Paralympics in London a friend turned round and said “See Sally if you get your legs amputated and have those blades fitted you’ll be able to walk again”. Yeah I’ll mention that to my Neurologist next time I see her. NOT!!!!!!


jimmyboyross
1 year ago

My favorite is telling someone I have MS and getting “oh I knew someone with MS, they died” ok thanks for that and “oh they are house bound now but you’ll be ok” again thanks, I think.

Stopped trying to explain what it is as whatever I say they will have the same symptoms or that I don’t look ill, have taken to making things up mainly to amuse myself “oh one symptom is your knees invert and you end up walking backwards, I’m now allergic to rope as a result”.

For some people it’s a second rate disability as its not visible plus they struggle to think what to say that’s not condencending, who cares what they say or think, the people that matter to you will understand and that’s all that matters.


jimmyboyross
1 year ago

Oh just remembered another favorite is the “oh I’m so sorry” I always reply “what!!! It was you that gave it to me?” The look of bewilderment is brilliant


velvet
1 year ago

Everyone I know seems suffer from fatigue.
They also all seem to know someone with MS. From what I can gather from all the MSers my friends/family/random people in the street know, there are two types of MS: the type where people are perfectly healthy and never have a single symptom in their life, and the type where people are terribly crippled and die young.

I think the comment that got to me the most was “It’s like you don’t have MS” from a family member.
I may look fine, but no, it’s really not like that at all.


highheeledfagin
1 year ago

Being told that I shouldn’t take the meds because that’s probably what’s making me sick. Just eat lots of organic fruit and veg to clear out the toxins naturally and boost my immune system. My response was something as uncivilised as, “fuck my immune system: it’s a proper arsehole”.


yvonnedesousa
1 year ago

First was eat bee pollen. Another particularly crazy one was a woman who told me that drinking bottled water wasn’t healthy. This greatly surprised me because I thought plain water WAS healthy. And the weird thing was she had an attitude about it. I promptly told her that I recycle assuming that was the issue. She then said she didn’t care about recycling- her problem was whether or not I tested the water’s alkaline content before I drank it! She suggested I buy litmus strips and then test the water on EVERY bottle. Wacko!!!!

Seriously though, the things that drive me most crazy are when people tell me that I should look into this random thing or I should look into that random thing. Hey, I’m kind of wiped and overwhelmed. How bout you look into it and get back to me!


theresabh
1 year ago

My family keep hounding me to give up flour, sugar and dairy because some guy on the Internet was cured completely!

Oh and I always get the “I know someone with MS…” stories too. It’s amazing really how practically no one fails to say it!


liam-c
1 year ago

“At least you don’t have the bad MS, sure I knew a lad with that and he’s fine”…seems there is a MS that’s ok, at least I know now

Liam


sonja1966
1 year ago

I was told if I eat right I woud be fine. I was told that I didn’t look sick. People say I’m not handicapped and get sworn at, flipped off and said that they would call the police for parking in the handicapped stahl when I have a handicap plaque. If I am in a wheelchair I get the stair of death. I was told I never smile when I walk around. For people that don’t know Ieducate them as to what is going on with me and my life. The thing about it is most people don’t seem to care, even medical staff. MS should be taken seriously and more people and professionals need to learn. I think that the only way people will learn is if they get the disease.


claude
1 year ago

“My favorite is telling someone I have MS and getting “oh I knew someone with MS, they died” ok thanks for that and “oh they are house bound now but you’ll be ok” again thanks, I think.” jimmyboyross

I am so pleased I am not alone! And jimmyboyross’s comment really puts my experiences into perspective! I’ve had reduce the amount of contact I have with my sister-in-law due to her persistent need to cure my MS through holistic means. I don’t mind holistic medicine (whatever works for people, I’ve tried somethings too) but for these cures to work I would have to stop my medication, cut out dairy, cut out wine, cut out wheat…. List continues but safe to say she is trying to cut out everything I enjoy! And I’ve already tried it, for me no big difference. The miracle cure is…. NETTLES! Infused, chopped, eaten, drunk… whatever, every week there was a new recipe and nettles is the answer to all my issues.
It really upset me and stressed me out so I had to stop seeing her regularly. The irony will be that in the future, after much scientific research, nettles might end up curing MS. It will be just my luck!


red-suzuki
1 year ago

This is a tough one, as most of us, as folk above have said…..we get analysed & talked about….you know the type of thing (Look theirs a drunk man, & at this time of day….)…… every time we go outside…..or I get the ‘oh your looking better, have you been doing something different’…guess i should say ‘yes, surviving’, but really can’t be arsed….Well, i guess, watching a pair of Great tits & Blue tits, Robins, Blackbirds etc…. feeding outside on feeding station, has given me a hit & a smile….& given me ‘something different to think about’…Its all I can manage right now…….just getting on & surviving….all best to those above & when Folk drop their non ethical, non-understanding broadsides….rant, ignore it or raise your eyebrows, cause you know, only a few know what we are going through….all best unraveling @knotty


cameron
1 year ago

I was told: ‘you need to stop obsessing about it’. That from someone I had trusted and been very close to for twenty years. How could he not understand what the diagnosis meant? I’m much better without the closeness that gives people the permission to speak to me like that.


funnybank
1 year ago

My comments are NOT April fool’s day jokes, these have honestly all happened to me. After I told my father I asked if there had ever been any family history, his reply ‘no, I don’t know where have you got that from, we’ve never had spastics in the family’. When I told my sister the symptoms I was dealing with she answered ‘oh I get that’, I thought to myself yeah but we all would have heard about it if you’d gone blind in one eye! Actual comments ‘oh it’s not that bad, I know someone who can get around on crutches’ ‘I had an aunt who just had gentle relapses until she died’. My first MS nurse was talking me through our first meeting and explained that most people with MS are more probably going to die of cancer. Which I suppose was her way of looking on the bright side.


mmhhpp
1 year ago

Funnybank, i have got a similar experience, my greatgrandma was blind on a chair, i ask my mum why did that happen, why was she blind! “Oh nothing all age…not ms ” really! I thought, how can they not know! And also they see people on wheelchairs and think all are the same! When someone is on a wheelchair because of an accident is really strong in the upper body while us are weak everywhere! They really upset me, so selfcentered they are, they still expect me to travel to visit them and they never will make an effort when they can. So ignorant….sorry about the rant……


mmhhpp
1 year ago

Hi, i have a good one! I live in the uk but i was on holiday in california, i went to the girls toilet by then i was walking holding on for my dear life onto the walls trying to reach a ladys toilet and walking slowly , a woman comes into the gils toilet and tells me…. “oohh I like yours shoes!….” what!!!!! M….F…. what about, do you need any help?

And also in california , i was on a wheelchair and my husband pushing the wheelchair and a guy says: “wuau, that must have been a hell of a dance! ” and also people speaking to my daughter who is pushing the chair and not even dare to look at my face. …..

What a laugh!


claude
1 year ago

Oh I completely forgot my favourite one from my sister-in-law that caused the moment I decided to reduce our contact: “If you go pregnant hun that would reset your immune system and cure you.” WHAT?! So I would carry a child for 9 months to feel ‘fit and healthy’, and when that child grows up and asks “How was I born mummy?” “Well my darling, I brought you into the world because I was told by your Aunty you would cure my MS.”
Sometimes I really wonder if people think before they speak! Evidently they don’t.


kattyazz
1 year ago

My (ex) reflexologist saying it’s all down to my diet. And then need to stop taking the meds and focus on organic diet. Any improvement I showed she loved to take credit for. I only kept seeing her because I felt guilty to stop seeing her. I pretended I was moving country to get rid of her and the awful, vaguely insulting and definitely upsetting ‘advice’. I’d genuinely just lie about what I had eaten that week to get her off my back. (I don’t eat badly btw). I cracked at one point regarding her dietary advice, and she always made snide remarks after that and would say ‘oops – I shouldn’t give you food advice’
Wanted to scream (but didn’t) YOU ARE NOT MY DOCTOR!! I never lose my s*** at people but it was very upsetting and stressful to hear when newly dx. I could write a lot about the things she said and did, but I’ll stop lol.


nrl321
1 year ago

My post covers attitudes to MS and disability in general!
I attended my sons swim carnival yesterday, I went to the disabled toilets in my wheelchair.
After hearing people gathering outside the door and 2 lots of bashing on the door I finished my business and pressed the button to exit. No sooner had the door started to open and a man and child started coming in the door. They stopped and the man said, in a derogatory way “Oh, there is actually ONE in here” and when I got out the door the group of other parents and kids waiting to use the toilet as a change room all laughed.


jinadom22
1 year ago

Wow reading some of the responses it really a wonder we share our diagnosis with others outide of other MSers.

The one that really gets to me is when I share my diagnosis with them rather a friend, family member, or co-worker. They always right away say oh wow I have a friend who has that and they are running everyday, they just do an all natural thing and no meat, you should try it and hey I can setup a time so you guys can meet and I can help the both you.

Like wait what, when did I say I needed help, and more to that want to meet your friend?


spreader
1 year ago

These seem to have been covered, but to enforce their regularity

1. “I get that – you’re just getting older”
2. “My xxxxxx had that. Died.” <pause, reflect> “but that was ages ago, the things they can do now…” <changes subject>


baward
1 year ago

When hearing of my MS diagnosis right at the start of Uni, my sister’s friend opined that “well, of course, you’ll have to give up Uni”. Like a lot of people, her intentions were good. But needless to say, I ignored her, continued with my studies and went on to get a 2.1 degree 🙂


baward
1 year ago

I also had a lady who from the council who used to come in and help me with the housework say “I’ll pray for you”. Again, well-intentioned but as I am a non-religious heathen, I was mildly offended.


amberinab
1 year ago

When I was first diagnosed, a friend of mine told me I didn’t have MS, I actually “just” had lime disease. She still sends me links to lime disease sites regularly! Thanks, I guess my doctor and my neurologist are both wrong, but your online article has got it spot on!

The other one that I get that really bothers me is that because I am in University, I have some accommodations that are available to me as a disabled student, but since my MS symptoms do not actually cause me to be physically disabled, I do not use them. I have been told by well meaning classmates on multiple occasions that I should use “this” or do “that” and use my MS to get advantages in school. WHY on earth would I want to do that?? WHY would I use a service that I don’t need to get an advantage that I also don’t need?? I will use the services if I need them, but in the mean time, I will do the work and get my degree just like everyone else in my program!!

I also get “you seem fine”, “but you are so healthy”, “they will find a cure before you get really sick, so don’t worry”, “I know someone who had it, their life was shit and they died”, or the opposite, “I know someone who has it and they are fine, MS doesn’t stop them from doing anything EVER”… the list goes on. lol.

This being said, I usually just say “oh?” “Thank you” or “No thank you”. People mean well, they just don’t know….


amberinab
1 year ago

i wish there was a way to “like” comments on here!! lol


cameron
1 year ago

‘Why don’t you get a stick? There are some very fashionable ones out there, you know’.

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