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 think of someone in a wheelchair. I'd never doubt someone telling me they had MS if they weren't in a wheelchair and I would never challenge someone using the disabled toilet or parking spaces because I know not all disabilities are visable, but honestly a wheelchair user is what I picture when I think of MS. I've never met anyone with MS, I've just seen portrayls of it on TV.

My ex-neighbour's daughter was healthy at 25, and slowly declined until she passed away in her mid-50s, by which time she had had a full-time carer for a number of years and was bed-bound.

I have known MS sufferers who could walk with a stick and drive an un-adapted car, and a lady with a wheelchair and assistance dog. This lady had a very adapted car with a ramp which she could drive.

I know several people with MS and they all present very differently so I wouldn’t make any assumptions.

I have MS. I work full-time although I work from home two days a week. I use a mobility scooter because my brain has no idea where my right foot is. Before I had the scooter I used to fall a lot. Being accused of being drunk in Morrisons has stayed with me ever since. I haven't had a serious relapse in years. The last one badly affected my eyes. The worst symptom for me is the fatigue - I'm always exhausted.

I am over 30 years in. My DSIS got it many years after me. I am not currently using a wheelchair but she us.

MS is complicated, it's just not a disability we are actually ILL. Even if we can walk we feel pretty shit mist of the time. Also tge nerve pain us off the scale

@NothingbeatsaJet2holiday I needed a sick note once from GP for an MS relapse, he went on about his friend with MS who had just hand built a boat, all by himself with MS, so I could go back to my office job. Fucker.

There is no single way a person with MS might look like. It could be anything from entirely normal looking through to incapacitated in a wheelchair. And I have seen one person with it go through those full range of looks, and not necessarily in that order.

Have you looked at the Wahl protocol? As a way of managing your MS?

Thank you for the thread and the tips on MS Society and MS UK! I'll be checking them both out to learn more 😊

I work with a guy with MS. He's around 3 y into his diagnosis. He looks great. He goes to the gym when he can and has a lovely tan from his recent holiday. I'm sure he has a million struggles but he looks the same as he ever did

I also have MS. I'm a wheelchair user because my gait is crap (I walk like I'm drunk and have been asked more than once if I was), walking is monumentally difficult when you have to think hard about lifting your legs every time, exhausting and besides the amount of falls I was having because my feet are numb was getting a bit daft. Faceplanting my living room is one thing, faceplanting the pavement outside is a whole different realm of shittiness. Do I regret my wheelchair? Absolutely not. Best thing I ever did.

This is my opinion, mine alone and isnt reflecting on anyone else btw. However I choose not to tell many people about the MS. Most people who ask get told its my private medical information I dont share. I'm my experience I find there's a whole narrative around it that MS is such a tragedy and must be 'battled' come what may. This might sound horrible but I dont really need or want anyone else's sympathy or pity. Neither do I want advice on battling something I dont want to. Yes, I have MS, yes with every relapse things get that little bit worse but that's not something I can change. Instead I put my (limited) energies into changing the things I can.

For example I was out at a restaurant earlier with DH and my children. Holding cutlery in both hands to eat wasn't happening so I ate with a spoon. Likewise holding my drink wasn't happening because it was too heavy to hold. Metal straw to the rescue. Some people would say that eating a main course with a spoon is sooooooo embarrassing and infantilising. For me it meant I could get every last bit of my mac and cheese out of the dish (the crispy bits are always the best!) and it didn't end up in my lap/on the table instead. Win win all around.

I have RA and am mainly ok now it's kinda of controlled, but relate to much of this, especially the fatigue.

I had an aunt as a child who had MS, years and years before the sort of treatments we have today. I never saw her out of a wheelchair and she died in her 50’s. I have two friends with MS. Both parents, careers and living as normal a life as they can with much better treatments but I’m fully aware that they both have horrendous flares and can quickly become very poorly. I’d say in both of those cases you wouldn’t know unless you were told. It’s such a spectrum. I’m sorry you’ve had a tough time OP

I would think you were like a former friend who was diagnosed almost 30 years ago but seems completely well and non-disabled and it was probably one of the many misdiagnoses of this condition. Or one of the other people I have known who were wheelchair-bound and later died. Or somewhere in between.

I think some may also get mixed up with ME which is a more controversial diagnosis and sufferers get accused of faking their illness.

Another MS'er here, will be my 10 year anniversary of diagnosis next year :(. I have to admit I knew very little at the time, and was terrified of being in a wheelchair, now I know a lot about MS, that is no longer my biggest fear.

When diagnosed, there were no visible signs, my mobility has significantly declined over the years and am now very slow walking and need to use my mobility scooter anywhere that isnt next to the car. I take a DMT which seems to have prevented any more relapses but the damage to my spinal cord has clearly increased. My consultant doesnt seem surprised.

But people who come to my office just see me sat at my desk and I look and talk as there is nothing wrong.

Sadly thats not the case, I'm term time and really need those holidays to recover from working. I struggle getting up and staying up, so getting a cup of tea or making food is very tiring, my DH needs to go away for work and they have to be carefully planned around my tiredness. I had an occupational therapist through work at the end of last term to discuss making my life a bit easier and she commented how lucky I was that my DH does so much for me which I know. I am reducing my hours and have asked to WFH on the quieter days which will hopefully help.

I used to think of a person in a wheelchair because my only frame of reference was an older lady who went to my church when I was growing up and she used one.

Bu now I have two good friends in their 40s with MS and, unless you knew, you'd never guess. One works full time and the other one works 4 days a week (has a day off as it's a fairly active, 'on your feet' job and she needs more rest). Both are fabulous performers and take part in a hobby group with frequent rehearsals and performances. One has some vision problems and the other one sometimes has power naps in rehearsals and looks tired. Those are the only signs in otherwise full, active lives. So now I would never make any judgments or assumptions.

I'd really like to read the views of the tossers people who voted YABU.

This is me too! I work so hard at keeping active, healthy food etc that it’s hard for people to understand. It’s even hard for me sometimes. I said to my husband the other day, I just feel so tired all the time I wish there was something wrong with me to be able to fix.

fatigue and brain fog are really getting me down these days

MS has a spectrum as others have said. I have found that some people believe MS to only present as the rapid degenerative type and can’t accept that it can present in other ways. Like someone else has said, mental wellbeing also plays a part.
We also aren’t to know why some folk have disabled transport passes if they don’t have an apparent disability. They can be issued with a diagnosis letter, whether or not the person actually has need for the free transport at that stage of life. They might not have mobility issues now but can still get the pass. A marathon though, wow!

I have 2 friends with it. One you wouldn’t know. The second usually you wouldn’t know but when she gets tired she will
drag her feet. I do know of friends of friends who are in a wheelchair so depends on the speed of progression and whether the medication helps.

My SIL with MS started out with a slight limp in one of her legs that within 10 years time became wheelchair bound and unable to move legs at all.
My husband’s cousin with MS struggles with walking uphill and exhaustion.
What really, really annoys me is that my MIL is one of those people who have nagged her way to a disabled pass and she calls out other people with passes who “look like they can walk absolutely fine and stop parking in my spot”. I no longer go out with her, I am so mortified.

The thing is, everyone has limited energy and decides how to spend it. Most of us have enough for work and family. Some have enough for work, family and hobbies/exercise.

People judge when you appear to have enough energy for mountain climbing and being good company, but not for the daily commute.

And honestly it’s a hard balance at times- energy spent on looking after yourself, exercise classes, walks in the country- is repaid with better health, better disease management and better mental health. But people who are in the trenches with various personal situations and struggling to cook a decent meal don’t always manage to do that self care themselves and begrudge others managing it.

I’m struggling at the moment. Chronic illness, elderly mother and MiL, husband also needs support. Work feels like a massive intrusion on limited time for self care. I have totally let exercise slip even though summer is my best exercise time.

Sorry, that’s a digression to my own problems.

I’d polish up a sentence about ‘working hard on staying in remission’, or ‘I’ll pay for it later, but it’s worth it to have some fun/see you/keep my body moving.’. People don’t automatically understand what it feels like to be you. You have to explain.

DS1 brought a tear to my eye last week. I was admiring the wool range in a shop and saying ‘mustn’t buy any more’, and he asked if I was out of spoons for crochet these days. It was lovely to be ‘seen’.

A friend has it. I was shocked because of how active he is. Also have another friend with it who is a full time wheelchair user

I don't entirely agree. I think a huge factor is the demonising of disability and people with disabilities by successive governments (including the current one). Even people with visible disability are getting the "must be faking it" treatment.

According to the new mantra we are unaffordable, living lives of luxury with multiple foreign holidays a year, exaggerating our conditions to rake in taxpayers money, and don't forget a brand new (probably a BMW or Porsche) car every three years...The purported level fraudulent claims which is constantly being claimed is in direct opposition to the fact that the DWP say that fraud is so negligible as to be 0%; and ignores the fact that many people with disabilities work etc., etc. The result of this has been to make our disability public property, giving everyone else the right to police and question our disability. Society is changing (and not just around this issue) into one that is, frankly, on the one hand jealous of the purported "benefits" disability might bring which they can't have, and on the other see people with disabilities as leaches playing the system for all they can get.

@PhilippaGeorgiou interesting points thank you. Be nice to drive a brand new car and have all the holidays people assume we are having...

I hear you
I have Myasthenia and don't "look ill" (at least not to the untrained eye - my neurologist and close family can see the clues of ptosis/weak smile etc)

But I made a bit of piece with it earlier this summer as my mum had broken her arm and I realised as soon as she had all the plaster /sling off I often forgot she had a weak arm still.

I wear a sunflower bracelet as a gentle reminder to people and if I am somewhere busy but don't take my wheelchair then I often take a stick as a visual clue to people