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...

Close family members had it and that’s how I know about the hidden side of suffering exhaustion and depression and pain.
The symptoms of MS were so variable but they all had in common that there’s an ever increasing list of them and the they’re very debilitating. I have every sympathy for anyone dealing with this condition or any disabling condition, especially in this time of huge social stigma with successive governments blaming disabled people for needing help while saying we can’t afford to help them. Disabled people can’t win basically.

This government ableism, whipping up and othering is so awful. Disabled people have more than enough shit to deal with already

My mother always said she would have "you are looking well" on her gravestone and she did look well for the first 20 or so years with MS

I'd love to see more awareness for MS, as it certainly doesn't seem to get the attention and understanding some other chronic and invisible illnesses are beginning to see. If anyone has any recommendations of where to find good information and people's real stories and experiences, I'd love to learn more!

I have to disagree here. Quite rightly, MS is very well funded financially and there are very few people who don’t know about the illness. On the other hand there are many rare autoimmune diseases that seriously affect mobility and life expectancy that just don’t get the recognition or funding because they affect too few people.

How can you know how disabled or otherwise your "former friend" is? I assume you don't live with them.

People outside my family see me work , swim, take the dog out. People inside my family see the bed bound days and days when I can barely move my legs or talk

Geez. You think a GP of all people would be more understanding.

I'm sorry you had to deal with that.

I know one through a hobby group and when he's in remission he comes to meetings. He looks totally ordinary and you wouldn't know he has the condition. My other friend is a lot further on, and you can see she's suffering. She is in constant pain and looks ill, and walks with a stick.

I've known other people with it who you'd never have known to look at them, and others who have been in a wheelchair, or declining and mostly bedridden, needing carers etc.

So basically, I know that many people with MS don't 'look' disabled.

I don't know if it helps, but there's a few legitimate websites that give good advice on how to complete PIP forms eg how many days it affects you, terminology to use and CA are really helpful too. Also a couple of reddit threads for people with genuine PIP needs. I'm sure there's mumsnetters who can help too xx

The people I have met who have MS range from looking and seeming like a normal healthy person to obviously being severely disabled with many impairments, such as inability to walk, incontinence, tremors, slurred speech, moodiness, brain fog etc

I’ve got ME/CFS. I was actually originally misdiagnosed with MS. I look and seem like a normal healthy person. I get PIP, am now too unwell to work, I have a disabled persons free bus and train pass and a blue badge. I also have a card that proves to others that I am allowed to sit on the ‘priority’ seats (for disabled and elderly) on trains. To get the card, I had to sent the train company my PIP award letter. People sitting on those seats are supposed to give up their seat if anyone bearing that card wants their seat. Recently, I got on a packed train and I showed the card to the people sitting in those seats and they ignored me and when I asked again, one of them just said “I got here before you. I would let a disabled person sit here but you’re not disabled”. GRRRRRR!

I'm sorry you feel judged by people. It's not just MS they judge, I have fibromyalgia and people seem to think it's just in my head. How I wish they'd spend a week in my body.

My father had MS, he had problems with mobility and eventually lost the ability to swallow. My friend was also diagnosed recently and was ok for about 5 years, now has to use a mobility scooter.

People will always have their opinions, so try not to worry about what others are thinking or saying. Take care of yourself 💗

I wouldn’t think anything.

I know 4 people with Ms ranging from a foot issue and running marathons to PPMS and I between.

My DS has hereditary spastic paraplegia which shares a lot of similarities to MS and if we are out all day he uses a wheelchair but he also swims 9 times a week and goes to air soft.

It’s the crippling muscle spasms , pain and tiredness afterwards that people often don’t see. But he’s only 21. For him a day out airsoft every now and again is worth it.

My ds also has hand tremors, extreme fatigue and has no feeling in his left foot below the knee.

What I think people don’t appreciate is what people do despite their disability. They seem to think if you’re disabled you should sit and accept it and not push yourself. Except humans push themselves everyday.

one persons training for a marathon is another’s weekly walk around Tesco.

my BFF has it. to look at him, you wouldn't know a thing, i look more disabled because i use mobility aids due to spine issues and OA, but he's lost all his feeling to his elbows and knees and now has to do visual confirmation he has hold of something. He's in awful constant pain, suffers with depressive episodes, doesn't sleep.. but refuses to let it get the better of him, and he continues to live his life with very few adjustments, He's only recently conceded to having a blue badge and claiming disability.

When we're out, he worries more about how i'm coping than himself... we've had a few good natured arguments about it and i've reminded him i'm not the only one exhausted/in pain and if i'm struggling, then i KNOW he bloody well is and to sit his ass down with me.

Thanks for sharing all your opinions and stories and solidarity to those of us dealing with any condition and the challenges we face.

It seems like a bit of a mixed bag, which is what I suspected. It did feel good to air my frustrations, so thank you.

I guess it's one of those ones that unless you actually have some kind of experience with it, you won't really know what to expect.

I just wish people were more accepting and less judgemental in general. One can dream...

As I get older (& older!), I realise that people in general are nowhere near as lovely & empathetic as I've fondly believed for most of my life. So many seem to be driven by envy & spite. I've lost count of the number of 'nice' people who have eventually revealed really unpleasant views to me thinking I'll agree because they think it's normal & people with disabilities are one of the hot topics along with racism.
Here's the most awful example: ' If people are really disabled, they should be in a home - if they don't want to go go into a home, they need to pull their finger out'. That was from a woman (& her husband) that I've known for decades, not close friends but met up regularly. I avoid them like the plague now because I know that I won't be able to change their minds.
Sorry not to offer you a more positive comment 🙁

You wouldn’t know my friend has MS unless she told you, although sometimes her eyes go a bit squiffy (her description). She has the relapse/remission form. Does a lot of swimming and keeps herself in the best possible shape she can for as long as she can. I know she worries that the relapses will get more frequent though.

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.

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.

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 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.

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 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 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!

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 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.