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

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 Perhaps you could let the MS Society know that their information is out of date since they still say that people with RRMS "experience clearly defined relapses of new or increasing neurologic symptoms", so 20 years without any symptoms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?

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.

Yep, they were saying that 38 years ago.

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

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

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 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.

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.

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

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 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

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.

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.

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.

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 ?

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.

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.

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’ .

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?

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.

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.

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