To ask what most people think a disabled person with MS looks like?

[NothingbeatsaJet2holiday]

I need a little bit of a rant and I'd like to get an overall opinion on what, if anything, the general public think that MS 'sufferers' look like.

Obviously not everyone will have heard of MS, that's not the issue. But those that have heard of it or may have some kind of personal experience with it, what image do you envision when you think of someone with the diagnosis?

It's 2025 now and with the rise of tiktok and social media, lots of rare diseases and illnesses are in the spotlight more than they have ever been.

Why in this day and age am I still having people tell me on a regular basis that I don't "look" sick or like I have MS, or accuse me of lying to get one over on them. It's either that or they spout off their expertise on the disease as their cousins, uncles, dog has it and they are wheelchair bound and unable to brush their own teeth. So of course they know more than me.

Why can't some people accept that having any kind of disability is a sliding scale and no two people will experience the same symptoms or issues.

Oh, and don't get me started on the disabled loo or parking spot 'police' that think it's their duty to call you out for not looking deserving enough.

I really thought we would have grown as a society by now and would be more educated due to the endless resources at our fingertips, but no, it seems to be the opposite and I'm just so fed up of having to justify or defend my invisible illnesses.

I AM NOT LYING, YOU JUST CAN'T SEE IT.

If only these people could walk a mile in my shoes...

On one hand, people should mind their own business unless they're genuinely looking to learn about something.

On the other hand, it's probably not reasonable to expect everyone to have a full understanding of a broad spectrum of disabilities that don't directly affect them.

I happen to have a couple of friends with MS so I really feel empathetic towards you. people don’t understand that in the early stages it can be controlled quite well, but then you will have flareups and literally will be bedridden. I watched a beautiful friend go from walking with a cane very occasionally to having a wheelchair. My dad also has Parkinson’s and has similar issues. Some days he will be up and about and looking totally normal; another day he will need a wheelchair or be shaking so bad he cannot not even walk. He also ‘freezes’ which means he has taken some terrible falls. People need to shut the hell up and realise that disabilities don’t necessarily mean being bound to a wheelchair 24-7

The one and only person I ever knew was a wheelchair user, so when i hear MS, i think wheelchair. But thinking about it now i realise of course it must have progressed from pain walking to how I eventually met her. I have Fibromyalgia and have similar frustration even from doctors declaring it's all 'made up', which doesn't help public perception of sufferes or its an illness for 'people who don't like work!' I've even seen it on threads here, 'it doesn't exist'. Illnesses like MS and Fibro involve a collection of very specific debilitating symptoms mirrored across the group. Individuals will present with other secondary symptoms and the degree to which is affects will also defer but the main symptoms will always be present. I've lost count of the number of times I've been ill and family members have seen me next and quipped, 'You look very well' with a smirk.

I am very sorry to hear about your mum But that doesn't mean everyone who is alive has to paint on a smile and never complain

My best friend has MS. At this stage its she can tire easily, can't walk far, sensitivity to heat and cold, can lose balance, grip etc, constant pain

But of course things can worsen.

But before my friend was diagnosed the 2 individuals I knew with MS were in wheelchairs with significant physical limitations so that would have been my understanding

As others have said there are lots of different symptoms and impacts vary so I would feel that the reactions you face reflect this, although obviously disputing you isn't on!!

I’m so sorry, it’s a relentless and unforgiving illness that affects every sufferer in different ways. My Dad had MS and I wouldn’t wish it on anyone. I’ve known people who have a steady decline with their mobility and motor skills (like my Dad) and also people who have ‘flare-ups’ where some days are worse than others. In medical terms they still have a long way to go with regards to knowledge and treatment of this cruel illness. I wish you all the best and hope you can find some kindness and understanding. I would never question anyone’s disability as many are invisible. Please take heart, people that understand are out there, I’m just sad you haven’t found many lately.

I have MS, diagnosed last year after a relapse that will never fully resolve so walk with a stick. Most people think my MS is just a wobbly leg but it’s so much more than that! Had a great chat with my MS nurse recently and she got it when I said the mobility issues are by far the easiest to deal with, because they’re predictable whereas the bone crushing fatigue is random, debilitating and mostly invisible to others. So many people tell me ‘oh but you look well’ when they find out. I’m trying to educate people in my world about the hidden symptoms, without boring everyone! It’s still bloody awful having to cancel on people if I’m struggling, I hate to think that it looks like I’m using my MS as an excuse which I never would.

I know someone with MS and she looks just like anyone else. I think she has it pretty mildly. I only know of it if she mentions problems with her hand strength. She's in her 70s.

My aunty has MS and over the years it has become more ‘visible’, which breaks my heart in two. From what I remember when I was younger, it wasn’t as physical as it is now, but I wouldn’t immediately know it was MS if I didn’t know her medical status. I asked her to educate me on it as I didn’t know enough. She’s a wonderful woman, I hate that she’s going through this. I’m sorry people are ignorant, OP, MS is a cruel disease.

You are NOT being unreasonable. My mum has MS and lost friends due to their refusal to understand, like one friend who very obviously thought she was using her MS as an excuse to cancel and would constantly reference one of her own friends with MS who was able to do x, y or z. I think MS is especially vulnerable to this type of thing as it varies so widely in how it affects people, also a lot of people seemed unable to get their head around the fact that if they were seeing my mum out and about this was during one of her limited "good" periods, they didn't see what she had to do to get there (including self catheterising daily) or the price she might pay afterwards for over doing it.

That said, I probably didn't have any clue before having personal experience of it and I'm sure there are plenty of other conditions I know embarrassingly little about. I think there's a huge difference between not having any knowledge but listening and believing people when they're telling you how it affects them, and continuing to dismiss or downplay what someone is telling you about their own illness because it doesn't line up with your perceived expectations. I've witnessed this so many times in relation to my mum, most shockingly from an A&E consultant after my mum had a nasty fall, someone you'd really think would know better.

Please apply again and get professional help. There should be a disability charity near you or you could try Citizens Advice or the MS Society. As you rightly point out, the wording is crucial.

My only knowledge and it’s extremely limited is from the West Wing and the President having relapsing remitting MS. I learned there are different kinds and some aren’t visible so this may be the issue?

I have MS but haven’t had a relapse since diagnosis 8 years ago and have no day-to-day symptoms, so I’m not offended if someone is surprised I have it. But I would be annoyed if they suggested I was lying!

I'm very sorry for your loss. What a tragic end to a young life.

Telling me to thank my lucky stars is such a horrible thing to say to someone. It's not a game of top trumps. Why on earth would I be thankful to live life with a debilitating disease that I have no control over?

My feelings are valid and I'm allowed to feel however I please.

But you asked what a disabled person with MS looks like to you. That's what a disabled person with MS looked like to that poster, from firsthand experience and personal loss.

I know several people with MS. Only one is what I would call disabled, and obviously so, and has required a wheelchair for the last 20 years. The others live with MS and make accomodations for it as necessary, but do not consider themselves disabled. I also deal with chronic invisible illness, by the way.

I'm not sure what you want from this thread, other than perhaps a vent, if you don't want people responding to your question.

I’ve had RRMS for 30-ish years now. (I was diagnosed quite young.) My symptoms have been quite variable. They’ve ranged from loss of speech and vision to balance and sensory problems. My constant issues are with fatigue, speech and gait. I’ve been on almost every revolutionary drug going and am currently on a good one that, even with side effects, works well.

MS is a highly individual disease. Its course is different for everyone. Today’s medications, though, are a world ahead of what was available when I was first diagnosed, and so much research is being conducted into the disease.

I remember a comment I had when I began a job somewhere; the boss called me into his office and said “I just wanted to say I really admire you for making the effort - just tell us what you need. I’ll have James keep an eye on you.” I was confused for a bit, then realised he meant he thought it was extraordinary that a person with MS was actually working. It wasn’t strange to me as I’d been working for at least 20 years since my diagnosis at that point, but I hadn’t encountered that before. It was and is sometimes a struggle to work, but I still do.

You can think what you want a thread is for people to give their opinions, if you didnt want this why post?

My colleague has MS. Is a wheelchair used and needs carers to come in and help. My mother in law also has MS and has a bad leg but you wouldn’t know from looking at her. So it’s very much a sliding scale.

My exh has MS, in the beginning on a good day he looked completely normal, could drive, was independent, in the middle of a relapse he was lucky to be able to walk with crutches, had to use a wheelchair for any distance, his eyesight shut down, he had problems with his speech & very poor coordination. 21 years later he is a full time wheelchair user, has to be hoisted in & out of bed, has carers 4 times a day to do everything from washing & dressing to making his meals & giving him medication.

He was diagnosed a month before ds was born, he went blind driving to work, had 6 relapses in the first year, in effect I had 2 babies, one 6lb 4oz & a 21 stone baby.

A close family member has MS and doesn’t ‘look disabled’ so I have sympathy OP but I agree with PP’s that unless someone has close experience with it then they won’t know much about it and why should they? There is such a massive spectrum of disability and on this forum constantly you will see people asking why people don’t understand about their disability, there is so much awareness etc etc but the reality is people don’t care and will just make throw away comments that, while highly offensive to you, they don’t think twice about.

One of my children has multiple life threatening food allergies and I *constantly’ hear about how they are made up/didn’t exist years ago/don’t exist in X country and how my child shouldn’t be allowed to eat in restaurants/go on aeroplanes or basically exist and it used to piss me off no end but now I get it, these people have just never experienced it themselves and have no clue and again why should they?

Yes to your last paragraph re food allergies. My ds1 has an anaphylactic peanut allergy and generally people get that it is serious…. People are more likely to believe in a peanut allergy than another less well known food allergy. But even so I had an aunt claim that the issue was me trying to make him special and she’d feed him a snickers on the sly to ‘show me’ .

There seems to be a few recent posters that haven't read the full thread.

To clear things up. I was asking what the general public thought a disabled person with MS looked like and to have a little rant about my own experiences. It says this in my OP.

Almost everyone has shared their opinions on how the think people like me should look, not how they should feel and be thankful that they don't have it as bad as others. Like I said, it's not a game of top trumps and as I had previously mentioned, It's a mixed bag from those with experience of the disease and those without. Just like I thought it would be.

"I'm not sure what you want from this thread, other than perhaps a vent, if you don't want people responding to your question."

It says in my OP that I wanted to rant and that I wanted a general idea of what people thought people with MS looks like. I wasn't asking weather or not you thought they were disabled.

"The others live with MS and make accomodations for it as necessary, but do not consider themselves disabled"
This comment makes me think that you are lying about knowing people with MS. The fact that they make accommodations for themselves means that the disease is affecting their life so these accommodations are needed. If they didn't consider themselves disabled, they wouldn't need accommodations.

I have a close relative with MS. He is a good looking, fit, healthy looking young man.
He puts a lot of effort into looking after himself with regards to diet, fitness and reducing stress. He follows a drug regime.

When he relapses, he looks ill.

This comment makes me think that you are lying about knowing people with MS. The fact that they make accommodations for themselves means that the disease is affecting their life so these accommodations are needed. If they didn't consider themselves disabled, they wouldn't need accommodations.

Whilst I agree with the rest of your comments OP - you were clear in why you were posting. Whilst what people think is not controlled by you, I very much agree that the comment about being grateful you are only disabled and not dead was in the worst of taste - that poster is clearly still in a lot of pain about something that hurt them a lot, but inflicting pain on someone else because they aren't dead is awful. Nobody should be grateful for having a disability rather than being dead, and it probably says a lot about some of the posters here that they think it - if the comment had been "at least it's only canacer and you aren't dead yet" nobody would have stuck up fo someone making such a comment. It's indicative of how little people really comprehand about disability that they think it's an ok comment to make.

But I don't agree with this one because I too come across people who do not consider themselves disabled. Obviously, many disabilities are on a spectrum, and some need little or no adjustments. That doesn't mean they aren't disabilities, just that they are on a "milder" part of the spectrum, and those people may see their conditions are more an inconvenience than a disability. Others can be in denial about the extent of their disability - kind of been there myself in the past when everyone was telling me to apply for PIP and I didn't because "I wasn't bad enough" (oh I was way past "bad enough"). And some people choose not to use the term at all because of the stigma attached to it, even though they may struggle.

In some senses if you are able to "pass" as not disabled, I can understand why some people might do it. At one level everyone makes "adjustments" in life. As a rather tall woman I often found that I had to adjust things to make them work for me. I recall having an entire kitchen redesigned because work surfaces were so low that they gave me backache. Perversely I have had to get my kitchen redesigned to have lower surfaces now because I can't stand for very long!

But my point is that some people do shrug off the label, and if they are able to do so, that's a legitimate choice. Lucky them. If I ignored the label it would have no impact at all on how people see me because I am very visably disabled. It is what is though.

My friend with MS is wheelchair (and so) house bound. Is partially sighted and needs pretty much 24/7 care (which isn't available so her husband can't work). A remaining life of waiting for the fall that will probably be the end awaits. The only glimmer of relief is having to fend off all the people who think it's a sham for the blue badge and the hundreds of thousands in benefits she doesn't get.

If she dares to try and get a bus, it's a lottery if there's a space.

She's now unable to use any public toilet, so that frees up the disabled ones for all the non binary types.

Does that help ?