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

I’ve had RRMS for 30-ish years now. (I was diagnosed quite young.) My symptoms have been quite variable. They’ve ranged from loss of speech and vision to balance and sensory problems. My constant issues are with fatigue, speech and gait. I’ve been on almost every revolutionary drug going and am currently on a good one that, even with side effects, works well.

MS is a highly individual disease. Its course is different for everyone. Today’s medications, though, are a world ahead of what was available when I was first diagnosed, and so much research is being conducted into the disease.

I remember a comment I had when I began a job somewhere; the boss called me into his office and said “I just wanted to say I really admire you for making the effort - just tell us what you need. I’ll have James keep an eye on you.” I was confused for a bit, then realised he meant he thought it was extraordinary that a person with MS was actually working. It wasn’t strange to me as I’d been working for at least 20 years since my diagnosis at that point, but I hadn’t encountered that before. It was and is sometimes a struggle to work, but I still do.

But you asked what a disabled person with MS looks like to you. That's what a disabled person with MS looked like to that poster, from firsthand experience and personal loss.

I know several people with MS. Only one is what I would call disabled, and obviously so, and has required a wheelchair for the last 20 years. The others live with MS and make accomodations for it as necessary, but do not consider themselves disabled. I also deal with chronic invisible illness, by the way.

I'm not sure what you want from this thread, other than perhaps a vent, if you don't want people responding to your question.

I have MS but haven’t had a relapse since diagnosis 8 years ago and have no day-to-day symptoms, so I’m not offended if someone is surprised I have it. But I would be annoyed if they suggested I was lying!

My only knowledge and it’s extremely limited is from the West Wing and the President having relapsing remitting MS. I learned there are different kinds and some aren’t visible so this may be the issue?

Please apply again and get professional help. There should be a disability charity near you or you could try Citizens Advice or the MS Society. As you rightly point out, the wording is crucial.

You are NOT being unreasonable. My mum has MS and lost friends due to their refusal to understand, like one friend who very obviously thought she was using her MS as an excuse to cancel and would constantly reference one of her own friends with MS who was able to do x, y or z. I think MS is especially vulnerable to this type of thing as it varies so widely in how it affects people, also a lot of people seemed unable to get their head around the fact that if they were seeing my mum out and about this was during one of her limited "good" periods, they didn't see what she had to do to get there (including self catheterising daily) or the price she might pay afterwards for over doing it.

That said, I probably didn't have any clue before having personal experience of it and I'm sure there are plenty of other conditions I know embarrassingly little about. I think there's a huge difference between not having any knowledge but listening and believing people when they're telling you how it affects them, and continuing to dismiss or downplay what someone is telling you about their own illness because it doesn't line up with your perceived expectations. I've witnessed this so many times in relation to my mum, most shockingly from an A&E consultant after my mum had a nasty fall, someone you'd really think would know better.

My aunty has MS and over the years it has become more ‘visible’, which breaks my heart in two. From what I remember when I was younger, it wasn’t as physical as it is now, but I wouldn’t immediately know it was MS if I didn’t know her medical status. I asked her to educate me on it as I didn’t know enough. She’s a wonderful woman, I hate that she’s going through this. I’m sorry people are ignorant, OP, MS is a cruel disease.

I know someone with MS and she looks just like anyone else. I think she has it pretty mildly. I only know of it if she mentions problems with her hand strength. She's in her 70s.

I have MS, diagnosed last year after a relapse that will never fully resolve so walk with a stick. Most people think my MS is just a wobbly leg but it’s so much more than that! Had a great chat with my MS nurse recently and she got it when I said the mobility issues are by far the easiest to deal with, because they’re predictable whereas the bone crushing fatigue is random, debilitating and mostly invisible to others. So many people tell me ‘oh but you look well’ when they find out. I’m trying to educate people in my world about the hidden symptoms, without boring everyone! It’s still bloody awful having to cancel on people if I’m struggling, I hate to think that it looks like I’m using my MS as an excuse which I never would.

I’m so sorry, it’s a relentless and unforgiving illness that affects every sufferer in different ways. My Dad had MS and I wouldn’t wish it on anyone. I’ve known people who have a steady decline with their mobility and motor skills (like my Dad) and also people who have ‘flare-ups’ where some days are worse than others. In medical terms they still have a long way to go with regards to knowledge and treatment of this cruel illness. I wish you all the best and hope you can find some kindness and understanding. I would never question anyone’s disability as many are invisible. Please take heart, people that understand are out there, I’m just sad you haven’t found many lately.

My best friend has MS. At this stage its she can tire easily, can't walk far, sensitivity to heat and cold, can lose balance, grip etc, constant pain

But of course things can worsen.

But before my friend was diagnosed the 2 individuals I knew with MS were in wheelchairs with significant physical limitations so that would have been my understanding

As others have said there are lots of different symptoms and impacts vary so I would feel that the reactions you face reflect this, although obviously disputing you isn't on!!

The one and only person I ever knew was a wheelchair user, so when i hear MS, i think wheelchair. But thinking about it now i realise of course it must have progressed from pain walking to how I eventually met her. I have Fibromyalgia and have similar frustration even from doctors declaring it's all 'made up', which doesn't help public perception of sufferes or its an illness for 'people who don't like work!' I've even seen it on threads here, 'it doesn't exist'. Illnesses like MS and Fibro involve a collection of very specific debilitating symptoms mirrored across the group. Individuals will present with other secondary symptoms and the degree to which is affects will also defer but the main symptoms will always be present. I've lost count of the number of times I've been ill and family members have seen me next and quipped, 'You look very well' with a smirk.

I happen to have a couple of friends with MS so I really feel empathetic towards you. people don’t understand that in the early stages it can be controlled quite well, but then you will have flareups and literally will be bedridden. I watched a beautiful friend go from walking with a cane very occasionally to having a wheelchair. My dad also has Parkinson’s and has similar issues. Some days he will be up and about and looking totally normal; another day he will need a wheelchair or be shaking so bad he cannot not even walk. He also ‘freezes’ which means he has taken some terrible falls. People need to shut the hell up and realise that disabilities don’t necessarily mean being bound to a wheelchair 24-7

On one hand, people should mind their own business unless they're genuinely looking to learn about something.

On the other hand, it's probably not reasonable to expect everyone to have a full understanding of a broad spectrum of disabilities that don't directly affect them.

My mum died at 37 from ms. She could barely walk, her speech was very slow and eventually she passed away. Maybe you should just thank your lucky stars you’re alive and stop giving a flying fig what others think.

Unfortunately OP I think there are so many able bodied users and grifters around claiming disability that we’ve all grown suspicious. It’s very unfair on people like you who have a genuine disability.

To answer your question, although people have heard of MS I don’t think much is known about the symptoms and effects of the disease because they tend not to be obvious.

My neighbour has MS - she jogs to her Pilates class. My friend has MS and she is off out everywhere.

My impression has been coloured by their apparent energy but they both say exhaustion sets in but to the outside world they look incredibly fit and healthy.

I know a bit about that as I have CP and take a lot of baclofen - so used to the brain drain as I call it.

With CP I am always asked if I have been drinking ( can't walk in a straight line ) and all the other platitudes ( don't you do well etc) - so I am not sure if it is best to have MS where the illness and fatigue isn't always obvious or to have what feels like a neon sign flashing above me saying disabled . The only positive is that although I get glares when putting the blue badge up I get nods of approval when the crutches come out.

Your post has made me less jealous of my neighbour!

I know 3 people with ms. All had it for around 15 years.
2 are very disabled and both need help with walking aids / wheelchairs. One of these has extremely poor vision. Neither can work at all.
The other is able to continue working albeit part time, and you wouldn’t know she has it to look at her.

My FIL has MS and can barely walk. We have to do a lot for him and realistically he needs a carer. He does have a scooter and a walker for the house. Can you see he’s disabled? Yes. He’s 70. Uses every disabled friendly thing possible.

My friend is a mom of 4 young children. She has MA. She is a SAHM because of her children. Her husband is self employed. Could you tell she’s got MS. No. She is in her 30s. Would she use the disabled toilet? No. Could she? Yes.

I had a work colleague who has MS. She walked with crutches and has special arrangements at work. She was about 45. Used revert disability friendly thing possible.

I have a degenerative spine disorder. I work FT. Can you tell I’m disabled (on a good day) no. On a bad day? Yes. I’m 38. Uses every disabled disabled things when I need it.

my point is that there is different variations of disabilities and different degrees of it. So long as you are doing your best every day that’s all that matters. People need to mind their own business and that’s all you need to say to them, however if you’re using the disabled toilet for example on a good day and not need do, although your perfectly entitled to, then to me that’s not great.

I would never presume to challenge anyone for using a disabled facility. Of course some dickheads will take advantage of the presumption that not all disabilities are visible, just as a woman squealed abuse at me for taking a parent-and-child parking space she wanted when I had a child in my car and she didn't, but this is always going to happen and people like this don't need an excuse.

I had restricted mobility for some years following a spinal fracture, owing to residual metalwork in my back which meant that my midsection didn't move for over three years. I particularly couldn't stand for any duration. I know how miserable and restrictive this can be and how much it impacts upon your quality of life. To look at me, other than a rigid, upright walk, an inability to lumber-twist, and a rather strange way of sitting down, unless you were a physiotherapist you'd unlikely notice anything amiss.

All this is nothing compared with a condition like MS. If at all possible, live your life and ignore rude, judgemental people. There are plenty of them about, unfortunately.

I have a friend with MS, I had no idea for the first two years I knew her. She was having some issues due to it and that's how i found out. I would never have doubted for a second she had it even without obvious symptoms.

ME I have known 3 people with - 2 I didn't doubt for a second. The third only seemed to be affected when it suited her and I didn't believe at all, she was a complete attention seeking hyperchondriac who was pleased to have landed on a diagnosis that there was no definitive test for. She liked to collect diagnoses like other people collect stamps.

I think that goes alongside any invisible illness. Most people think I'm exaggerating the pain I'm in.. which I've been in since I was 17.

I've also had older people tell me I'm too young to have Arthritis and be so disabled by it.. or that assume I'm using my wheelchair because I'm overweight.

Anywhere from wheelchair and mostly staying in bed.... all the way through to wild swimming, daily running, wild partying...

I know several people with MS (because us disableds all flock together innit) and they're all different.

I know that the wild swimming daily running lunatic just doesn't post the days she spends in bed, crawling to the kitchen for a drink - she does what she does because for HER MS, pushing herself is her way of fighting it and maintaining mobility.

I know that the mostly in bed or in a wheelchair friend can also stand and cook their dinner most nights, as long as they haven't had to do anything out of the ordinary, because theirs responds best to very very careful pacing and management.

No one who didn't know these people VERY well would know these things though.