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

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

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.

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 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.

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

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 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

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

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?

@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.

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

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

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 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.

I'm sorry, it must be a real hard thing to live with an having to live with ignorant people must make it worse.

I've got MS (epilepsy & COL4A1 - Strokes, sharp pains in any muscle, kidney disease, eye disease etc) so I know where you are coming from!

Honestly, i just ignore it. People can be stupid.

I think people mean well when they comment that you look to well to have it. Only a few years ago you were pretty much guaranteed to end up in a wheelchair. Fortunately treatment has improved. I still work full time and only need crutches when it flares up. People get very confused/nosey when I explain why I have, or have not got my crutches. Which I must admit gets very annoying sometimes.

I wouldn't assume anything based on looks, apologies if I'm wrong but I assume it to be a progressive disease and with a lot of variation in symptoms in different people, so it may be visible/invisible?

I had a colleague who had MS, I only knew as she mentioned it when apologising for not making tea, as she explained she wasn't able to carry drinks to people. After that I did notice that she perhaps had to concentrate on certain movements or take her time with some things but it wasn't to the degree that I would have realised if she hadn't mentioned it.

With anything affecting nerves I would expect there would be affects that wouldn't be visible to another person, eg tiredness/pain. I would assume that if MS symptoms were obviously visible that it would have progressed a lot, potentially beyond the point that someone would be able to keep working. It wouldn't suprise me for someone in work not to 'look' disabled (whatever that's supposed to look like!)

It’s so variable - no correct answer. The pain thing people need to know is it’s progressive and in some people symptoms can come and go. Alas is can also reduce life expectancy, lost too friends to it

Same. I have a friend with ms. Some days she can ride her horse. Others she can’t get out of bed. I was recently diagnosed with fibromyalgia and many people think it’s a made up disease to cover me being lazy or an attention seeker. I’m on holiday with family and my own mother thinks that my exhaustion is an attention seeking ruse to get out of activities.

Honestly before people close to me were diagnosed I thought you just ended up in a wheelchair. A very ignorant response but it just wasn't on my radar. I think it's really a spectrum a family member suffers with fatigue and I think uses a frame. A close friend of ours I think mostly suffers with urinary issues but is doing well on medication so you really wouldn't know.