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...

I used to work with someone with MS. For the most part "she looked fine" to everyone but her MS meant she tired easily, she would lose sensation in her arms, her eyesight would worsen and at times she would struggle to walk far. People really misunderstood her condition sadly.

If it's relapsing MS I would expect the person to be anywhere from looking totally well or walking with a bit of a shuffle or walking with sticks or using a wheelchair or in a wheelchair being pushed by someone else.

If they are getting on grand with walking I would expect them to leave the disabled bays for someone else and then use them when they are struggling a bit.

I have ongoing fatigue with my RRMS that persists regardless of whether I’m in active relapse or not. This can mean I’m fine when I start a shopping trip, but I’m struggling by the end. That’s why I use disabled parking bays. (Also, when I do relapse, I’m in a wheelchair so I’m not questioned then.)

RRMS can become secondary progressive (no one knows why). From then on each relapse isn't remitted and there is a downward spiral of functionality.

Disease modifying drugs may stave this off. It's an open question.

You do not need to justify the use of a disabled bay if you have a blue badge. I can imagine it’s really stressful though as I’ve seen enough videos of people with hidden disabilities being harassed and harangued by others.

I hear you, I wish I hadn’t read this thread either!! I have MS, nearly 10 years since diagnosis and I’m basically fine, as long as I don’t overdo it but I have two young children and a very busy stressful job so sometimes I do get fatigued. Mine is well managed by DMTs and I try not to think about it to be honest, I don’t think there’s much point crying about what may or may not happen when I’m ok now. I wish you luck (if that’s the right word) with your diagnosis.

Thank you ❤️ genuinely

The problem is most people don't know what somebody with ms looks like. Why would they, unless they already knew somebody.

Also, the symptoms are very wide ranging.And there are too many variables

My cousin occasionally uses a stick. Other than that, i'm not sure you'd know she had it. Using a stick could be anything.

Oh was diagnosed in 2014 had to take medical retirement 5 years ago. Came out with me for a 30min dog walk yesterday (would have taken me 10 aline)and been in bed since. He gets higher rate mobility and care we found a lot of help online to fill the forms in

The problem is most people don't know what somebody with ms looks like. Why would they, unless they already knew somebody.

The worse the MS gets, the fewer people you will know. It's bad to get it later in life as all the people you though were friends fall away over the months and years (it will start with them forgetting about accessibility). However if you are unlucky enough to have it early, then you can have a lonely time - the internet and social media does help in a way. But you can end up in a crowd of similar.

I read a short story years ago of someone who had MS and devoted their life to a cure. Which they found. After it was confirmed as working they were expected to take it, but the refused saying the MS had given them the gift to see people as they really are. (My friend found it ....)

I have had two people in my life with MS and they both had progressive MS, so just steadily got worse and worse rather than ever having a good day. One died a few years ago after living with MS for about 15 years. The other has had it 15ish years now and is finally having to accept she's a full-time wheelchair user.

However, about 20 years ago I met a 19 year old girl in a nightclub bathroom who had MS. She came across as being perfectly fine at the time, lively and bouncy and just enjoying life. The week before she'd only just recovered from an extended period of being bed-bound.

I'm sorry for everything you're going through, I know how incredibly difficult it all is. Sending you strength

An uncle of mine had it, it mostly affected his speech, which was permanently slurred - he had actually been a bit of a drinker before getting ill, and many just presumed he was drunk. He found this very frustrating.

The worse the MS gets, the fewer people you will know. It's bad to get it later in life as all the people you though were friends fall away over the months and years (it will start with them forgetting about accessibility)

So sorry to hear that 😞

Don't feel sorry. At least they know that while they may not be able to visit many places, at least all the non binary folk who couldn't get out before now can. So it's not all doom and gloom.

I do occasionally spike the disparity between the amount spend on trans rights one way or another and the amount not spent on the less able, but many years history of posting on MN (most as other people) has demonstrated where peoples priorities lie. And this is pushchair pushers asking the bus driver to move "that person" in a wheelchair so they can get on.

I'm sorry you've experienced the dropping off of people. However this isn't a universal experience, so you shouldn't state it as such.

Also there is no cure for MS.

Do you know what kind of day this woman you saw walking around the supermarket was having?

I've not experienced it. I am reflecting the experiences of someone I know.

And I believe I said a while back there is no cure for MS. Over the years I have known my friend, I have done a shit load of digging, writing (in the early days) and searching. One of the first internet searches I did was in 1995 on the side effects of clonazepam (aka rivotril). No Google back then. It was Altavista.

I've got ME not MS, but i do find it ridiculous that when talking about my ME to a medical professional, they always tell me how well I look. But for appointments for other things, if they don't know, I'll get told I look tired and unwell.

It's all so ridiculous. Being disabled is the worst.

Disability bashing if I ever saw it.

You know nothing of this woman or how it affects her. Have you even read this post?

Most people have shared experiences of how one minute they can be absolutely fine and the next minute they are falling asleep while eating their tea.

Try not to judge something when you have absolutely no idea what you're talking about.

An open mind and a little understanding goes a long way.

Solidarity to the MS people here. My MS was diagnosed very late which sadly means it went untreated for over a decade. My prognosis is much worse than it would otherwise be. Within the next few years I will likely lose my job. I find that working is speeding up my disease progression because I come home and go to bed. I don't advertise my illness and I think many people in work probably wonder why I get accommodations. I have to fight for them again at intervals even though they are formalised through occupational health. Sometimes the external barriers are as hard as the actual disease.

I would be embarrassed to write such a post highlighting such ignorance as you have. Your neighbour is entitled to not make his life a bit easier if he chooses to do so, but to compare him to this Woman, who you know nothing about, is low.

My friend told me very early on that they had knew more about MS than their consultants.

While I'm happy for the person you live with, if you know anything about MS you will know how incredibly variable the progression is. And there is a genetic component to progression speeds, some of which are being studied at the minute. So the person you live with is at the lucky end of the unlucky group with MS!

I have RRMS that is probably soon going to be diagnosed as having progressed to SPMS. For the first 10 years nobody would’ve been able to tell unless they knew me very well or were watching very carefully.

For the last seven years, I’ve been using a wheelchair when I’m out of the house so it’s much more obvious. I still work full-time in a big job which I love and I’m incredibly lucky to hardly ever experience MS fatigue (so far).

However, what people won’t see is that I have almost no sensation on my left side and sometimes need help to dress, can’t wash my own hair or lower body and I’m very limited in what cooking and household tasks I can perform.

I’ve learned to be incredibly organised and both my house and my office at work are very carefully planned to make things easy for me. You wouldn’t think it was done to accommodate a disability unless you knew.

How I feel about the reaction of others can change dramatically, partly depending on whether it is ignorance or maliciousness and partly on how well I am feeling myself. I’m now in my mid 50s and generally progressing to the don’t give a stuff about people I don’t know which has helped!