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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

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

166 replies

NothingbeatsaJet2holiday · 21/08/2025 21:41

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...

OP posts:
shellyleppard · 21/08/2025 21:44

Op I think because its not always a obvious visible illness people don't realise how ill you actually are. If that makes sense x

pizzaHeart · 21/08/2025 21:46

My opinion : for quite a while they look absolutely the same as everyone else and the difference won’t be noticeable visibly only in conversations when they mention extra breaks at work or going to bed earlier or visits to their consultant.

BUMCHEESE · 21/08/2025 21:53

I know / knew a few people with MS, going from appearing absolutely fine (when up and about), to using a cane, to being extremely disabled. It's a real spectrum. Mental health seems to be a huge factor in how "well" they are too.

Annoyeddd · 21/08/2025 21:53

The three friends I have had over the years with MS - one became immobile very quickly and died within a couple of years, another has had it twenty odd years with the main problems not being able to walk uphill easily and any cold lasts much longer than average the third is somewhere in the middle.
I think it there are four types of MS.

Original poster
NothingbeatsaJet2holiday · 21/08/2025 21:54

shellyleppard · 21/08/2025 21:44

Op I think because its not always a obvious visible illness people don't realise how ill you actually are. If that makes sense x

It does yes, thank you.

I was curious if there was some kind of general view that others held for those with MS, to say these things.

My recent annoyance if that apparently I'm fabricating my symptoms to allow extra wfh. I could understand if this was causing them a higher workload but it's not.

Or that I'm being lazy getting a taxi on the school run as DH is working away and I don't have the energy to walk or drive. This is coming from people that know of my diagnosis.

I wish they would just mind their own business and keep their unwanted opinions to themselves. They eventually grind you down when you're hearing these uneducated comments on a regular basis.

OP posts:
Arlanymor · 21/08/2025 21:54

I have two friends with MS - one has a very significant issue with walking, foot drop, unsteady gait and balance issues. The other has minor coordination and sensory issues. It's different for everyone and sadly some people just don't understand this - but they are also the people who tend to not be able to wrap their head around less visible disabilities. I have a friend with very serious epilepsy too and he's forever spending his life explaining to people why he wears a sunflower lanyard...

shellyleppard · 21/08/2025 21:56

Op my best friend was diagnosed 30 years ago. On the outside she looks okay but you can see the signs. Its a horrible disease and I'm sending you the biggest of hugs x

XenoBitch · 21/08/2025 21:57

I had a friend who has MS. She had been having weird symptoms for a long time (the first was feeling a cold breeze on her forehead all of the time, when there was no breeze), and when she was finally diagnosed it was a few years before she "looked" disabled. She now uses a walking stick and has a lot of fatigue. Still manages to work for now though.
An old boyfriend's mum had it, and was a full time wheelchair user. She had to have carers in, and some days she was paralysed and bed bound.
Another is a lady I know now who has just had to leave her WFH job because her brain fog and eyesight got worse. She uses a scooter to get about, and a zimmer frame at home.

But yeah, YANBU. MS is a spectrum in a way and no two people present the same. Rant away!

Shinyandnew1 · 21/08/2025 21:58

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.

I have known four people with MS. One was very quickly in a wheelchair and has since died, one was able to walk using sticks for a long time, one has had numb feet but no other symptoms for 15 years and has been on various different types of medication. One has only just been diagnosed and struggles a bit with balance.

crackofdoom · 21/08/2025 22:04

My lovely neighbour looks very fit and healthy. She hasn't had a serious relapse for years, due mostly to luck I guess, but she also looks after herself very very well, and is proactive with seeking out every course of (proper, medical) treatment going. I think she has quite a few minor symptoms that she makes light of to acquaintances though.

Coconutter24 · 21/08/2025 22:08

I had a friend with MS, she looked absolutely fine and was always (or seemed to be) full of energy. Loud bubbly friendly person. Very rarely she would bring a stick to work if her legs weren’t feeling great but you really wouldn’t know to look at her.

Linguist1979 · 21/08/2025 22:11

I have it and run, cycle and go to the gym every day. I climb mountains and am on top form to the outside world. No one sees the afternoon naps, the stiffness in my legs, the restless legs at night, the sheer exhaustion, the shaking hands, which turn to stone if I grip something, constant tripping and falling ….. and the rest!

XenoBitch · 21/08/2025 22:13

I think there was some case in the press about a lady with MS who was seen running marathons, but claiming PIP. She got done for fraud.

chroniciconic · 21/08/2025 22:13

I have to admit I know very little about MS; I know it some people have constant degenerative symptoms and others have flare-ups followed by better periods, and I know it's a chronic and lifelong condition. That said, I don't think I have a particular mental image of someone with MS. Pretty much anyone could tell me they have MS and I wouldn't see any cause to doubt them, no matter whether they're a wheelchair-user, visibly unwell, or seemingly very fit and healthy.

As somebody with an invisible illness myself, I try my best to understand and check my assumptions about others who may be in the same boat. Just because somebody can do something today, I know that doesn't mean they will always be able to spare the energy or avoid the symptoms. Equally, I would never question anyone on what facilities and accommodations they may or may not need, I've been on the receiving end of such doubts and I would hate to be that skeptical, invalidating figure in someone else's life.

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!

Original poster
NothingbeatsaJet2holiday · 21/08/2025 22:15

Coconutter24 · 21/08/2025 22:08

I had a friend with MS, she looked absolutely fine and was always (or seemed to be) full of energy. Loud bubbly friendly person. Very rarely she would bring a stick to work if her legs weren’t feeling great but you really wouldn’t know to look at her.

I think this is the side of me that most people see so it's probably why they seem to openly share their unwanted opinions when I do show my 'sick' side.

I guess if they seen the other side of the coin when I've used up all my bubbly energy trying to power through the day at work. Then i'm home and pass out sitting upright while eating my tea from sheer exhaustion, they might have a different view on the matter.

I don't really like showing that side though and I will hide it as long as I possibly can.

OP posts:
Original poster
NothingbeatsaJet2holiday · 21/08/2025 22:18

Wow that's horrible and I'm glad she got done.

That's not to say that someone can't run marathons with MS but she obviously lied about how much it affected her.

And here's me unable to claim pip after 4 knock back because I don't know how to word my application to fit the narrative.

OP posts:
Whatshesaid96 · 21/08/2025 22:19

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.

StillFeelingTired · 21/08/2025 22:19

chroniciconic · 21/08/2025 22:13

I have to admit I know very little about MS; I know it some people have constant degenerative symptoms and others have flare-ups followed by better periods, and I know it's a chronic and lifelong condition. That said, I don't think I have a particular mental image of someone with MS. Pretty much anyone could tell me they have MS and I wouldn't see any cause to doubt them, no matter whether they're a wheelchair-user, visibly unwell, or seemingly very fit and healthy.

As somebody with an invisible illness myself, I try my best to understand and check my assumptions about others who may be in the same boat. Just because somebody can do something today, I know that doesn't mean they will always be able to spare the energy or avoid the symptoms. Equally, I would never question anyone on what facilities and accommodations they may or may not need, I've been on the receiving end of such doubts and I would hate to be that skeptical, invalidating figure in someone else's life.

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!

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.

mamagogo1 · 21/08/2025 22:19

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

Original poster
NothingbeatsaJet2holiday · 21/08/2025 22:20

@chroniciconic
Thank you for your kind words.

The MS society and MS UK have lots of information and guidance that you could check out.

OP posts:
Hibernatingtilspring · 21/08/2025 22:22

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!)

Toddlerteaplease · 21/08/2025 22:27

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.

Original poster
NothingbeatsaJet2holiday · 21/08/2025 22:28

mamagogo1 · 21/08/2025 22:19

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

The thing is, with all the new treatments available in recent times, it's not always progressive as it once was.

My neurologist told me that if it's caught early enough, when there's little damage, and the right treatment is started immediately, then there is a possibility that you could live a full "normal" life, with minimal issues.

It all depends on the type of MS you have though and how well you respond to the treatment.

So far for me the only "damage" i have is some optic nerve thinning and my treatment has so far stopped any further damage or attacks from happening.

The fatigue is bone crushing though.

Long may this research and innovation continue.

OP posts:
GreatTheCat · 21/08/2025 22:30

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.

CrochetQueeen · 21/08/2025 22:30

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