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...

It looks like my sisters friend who is very sociable but needs lots of rest afterwards and has difficulty swallowing. It also looks like one of my managers who has a young child but works in a demanding job and has adaptions and rests to help her continue working.

sorry you’re experiencing those attitudes, you’re right we should have moved on, but there are still ignorant twats around sadly.

Thanks @PhilippaGeorgiou I actually agree with you.

When I replied to that poser, I possibly didn't explain what I meant very well.

What I meant was that I feel like that poster was pretending to know 4 people with MS that didn't class themselves as disabled purely to fit their narrative. Not that the people she was referring to didn't actually class themselves disabled or not. I hope this makes sense?

In a way, I don't actually really think of myself as disabled, even though I have a disability. This is because the disease hasn't caused me as many issues as it has caused others. It is a vast scale and everyone will have their own experiences.

I understand what you're saying and I agree completely. I do sometimes struggle to verbalise what I mean, so apologies if what I wrote came across the wrong way.

My friend was diagnosed in 1987, aged 17. The walking went aged 21, the vision and continence aged 35, the standing aged 40 and the use of the legs aged 45. In that time she (and I agree) feels that it's become worse for the disabled in 2025 than it was in 1987. Probably more so for her because it's got that much worse for women too.

Sorry I don't have a fluffy bouncy story that's BBC approved about how wonderful and liberating it is to have a disability as if it's a lifestyle choice.

I've got MS, but because I limp, use a stick to walk, or a wheelchair or mobility scooter for anything other than a very short distance and can only use one hand, nobody questions it.

I know a lot of people who have MS with varying symptoms.

I have been diagnosed this year. About time start meds.

For me, there's nobody I would look at and think they have MS. My symptoms are varied and sometimes very frustrating and annoying.

This thread has scared the hell out of me tbh. I really shouldn't read them.

I am happy that I am not surrounded by people who say stupid shit. People have mostly been interested in how it's affects me, as you say, because I don't look disabled, but nobody has said those words to me.

I hope you're okay OP

Well I live with an MS sufferer and I can tell you they look and operate like a non-disabled person. Full time high pressured work for the last thirty years. No blue badge. No benefits id any kind. Never moans or talks about it.

I presume the actual diagnosis is Radiologically Isolated Syndrome then, rather than MS? As far as I am aware it is impossible to have a diagnosis of MS with no symptoms at all for that period of time.

www.mssociety.org.uk/about-ms/types-ms/radiologically-isolated-syndrome-ris-and-ms

I think the issue is that MS can present very differently in different people. Some people find that a difficult concept unfortunately 😕

I know 2 people with MS.

One (my aunt) is now 74 and was diagnosed in her mid thirties. If you looked at her, you wouldn't know she had MS. She walks fine - slower now and uses a stick, but more down to age and a knee replacement than anything. No issues doing anything for herself etc.
However, she has lots of difficult symptoms that are not visible e.g. aches, permanent catheter, fatigue etc.

The other person is someone I worked with who I still see. He is now 60 and was diagnosed in his late twenties. If you saw him, you can absolutely tell his disability. He struggles to walk - can do very short distances with 2 sticks or something to hold and uses a wheelchair most of the time.

There will be lots of people somewhere in between or better/worse.

MS is a bastard disease. There is no correlation between disease and disability. You can be riddled with plaques and have no symptoms. You can have a couple and be wheelchair bound.

Add to that it's ability to come and go (certainly in the early stages) such that by the time you get to a consultant it's "cleared up" and the fact that (as far as i know) the gold standard of diagnosis is a still a lumbar puncture (to look for signs of demyelination) and you have an elusive diagnosis.

My friends diagnosis at age 17 was pretty much a unicorn. And it only happened because her consultant had literally just finished med school where the last thing they did was MS. They had to really fight to get a test and when it was done they insisted on doing it again as it was so "out there".

Of course now with improved techniques (MRI mainly) you can get to a diagnosis quicker and hope the Disease Modifying Drugs can stave off the worst. The fight for Interferon (Avonex) was another energy sapping battle.

Well you are wrong.

Diagnosis was made twenty years ago. RRMS under care from a consultant. Recent brain scan with few changes. Well managed with medication. Sorry this doesn’t fit in with your narrative.

MS is a degenerative and progressive illness. At the start, it’s not noticeable, but it will be over time.

For casual readers, any medication is disease modifying, not a cure. There is no cure.

Work continues apace to look for the cause and we are as far as it's a blend of genetics and environment. With the hint of a trigger like a totally benign (if at all noticeable) viral infection.

Currently twice as many women as men suffer from MS (so hints at something "in the genes"). There is also a possibly puberty connection as people raised in more southern latitudes moving north before puberty become as likely to get MS as native born people, but if you make the move after puberty, the chances are far lower.

There was a fad for stem cell treatment (not legally in the UK). However whilst it looks like a "cure", it wears off very quickly as whatever is causing the process of demyelination is still there.

There’s lots to be hopeful about. Breakthroughs are happening all the time.

Yep, they were saying that 38 years ago.

AI is going to be hugely helpful with healcare. It’s the one thing that really will be beneficial with speeding research up and bringing the costs down.

Apologies - clearly the MS Society don't know what they are talking about. Not my narrative and there was no need to be so rude. I asked a civil question prefaced by "as far as I am aware" and a link to the MS Society information. Perhaps you could let the MS Society know that their information is out of date since they still say that people with RRMS "experience clearly defined relapses of new or increasing neurologic symptoms", so 20 years without any symptoms even with medication is brilliant. https://www.nationalmssociety.org/understanding-ms/what-is-ms/types-of-ms/relapse-remitting-ms

It's also great that he's had MS for 20 years with no symptoms and "No blue badge. No benefits id any kind. Never moans or talks about it.". Clearly with no symptoms he wouldn't need a blue badge or benefits. Perhaps you might have considered how that statement comes across?

Depending on how severely the MS is affecting the individual and in what phase it's in, they could look completely well or profoundly disabled.

When I was a nurse, I nursed MS patients who were so disabled they couldn't feed themselves or do anything without help.

I also nursed a woman in her forties who had had MS for 20 years and was still a serving police officer (albeit on light duties). She only needed medical attention and nursing care during relapsing phases.

I am tended to believe it when I see it. I was thinking back in the 90s that being able to crunch large data sets would get to the nub of things (people who know about John Snow would know why).

There is a very long list of things for "AI" to solve when it actually works. So even then we may have to be patient.

I don't think I'd make a very good consultant.

https://www.bbc.com/news/articles/cgr94xxye2lo

It's already happening

There was every need to be rude as you literally fed into the whole narrative of the thread which was people not believing those who have (hidden) disabilities snd having a preconception of what a chronic condition should look like. Apology accepted.

I am fully aware they time will change things and the older we get the less ability we have to keep illness at bay but I’ve chosen to be positive. I have relatives in the pharma industry that tell me all sorts of interesting things and like I said, I think AI will be hugely helpful with healthcare going forward.

Because when we are struggling and we hurt it’s hard to believe there’s any light at the end of the tunnel but I really think there is. Neurological conditions are all under an umbrella and they are making progress with Parkinson’s which in turn will help with conditions such as MS.

The nasty cynic in me wonders why they cured an STI before MS.

Of course. And amen to that. But let's be honest. Even if a cure (which means preventing and reversing disability, so already that is a high bar) were to be discovered today (it hasn't) then it would be 10-15 years before we could even dream of it being available as a recognised treatment. And that assumes the current framework for medicine continues.

The best hope for now is to re-examine existing (i.e. cheap) drugs and see if any of the side-effects from their primary design may actually help with the effects of other diseases. Like antivirals for MS fatigue.

None of this is my field of expertise. I'm a tech nerd. But I try to help friends.

And that’s the key to it. If they can find something that has already got FDA approval then things move really quickly. Thing of the weight loss drugs so many of us take now. Five years ago we wouldn’t have believed there would be a medication widely available that actually worked nor would we believe it wouldn’t have been caught up in a decades worth of testing.

Well, obviously because antibiotic-resistant MRSA and other pathogens would ultimately kill millions if the current situation of increasing antibiotic resistance goes on. No operation in hospital would be safe. We'd effectively be back to the days before we had any antibiotics.