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 know 3 people who have MS. They all have widely different symptoms. I’m sorry for the ignorance you’re experiencing

I don’t think of people with MS as disabled, as such, although it’s one of the diagnoses protected under the Equality Act. My partner has it. Occasional crushing fatigue is the main issue. And a slightly uncooperative right side sometimes in the winter. As to progressions, I try not to think about it. We’ll take that as it comes.

my friend has ms and I wouldn’t know if she hadn’t told me. She’s one of the fittest people I know, walking, climbing, running, cross fit etc. I also know she suffers from it fatigue and pains and eyesight, but I think she would rather hide that from anyone than admit it.

I think ms seems such a sliding scale, before she got diagnosed I would probably say I would imagine someone with a walking stick as a minimum. Now if someone told me they had it I would take it at face value that they had and wouldn’t question it (not that I would have questioned it before) but my perception has changed

Optic neuritis (not full blindness, but not far off).
Muscle spasms and cramps.
Urinary incontinence and also permanent UTIs from incomplete voiding.
Paralysis and weakness is lower body, unable to support weight.
Weakness and numbness in the arms.
Fatigue
Pressure sores and ulcers.
Mental confusion, memory issues.
Sensory problems.

Imagine all that and still someone telling you to stop sponging.

Was this meant as a reply to my post?

My ex colleagues husband has MS. Doesn't seem to affect him too much he manages to walk around cities on European city breaks fine, they are always off travelling somewhere and looking after their four grandkids.

The system will flag it as a reply, it was more a bookend. Just to counter the next poster that pops up to say "someone I know" (because it's never themselves personally) has MS and they do ultra marathons five times a week whilst preparing to pogo stick around the world. With the implication that anyone with MS who doesn't is only in it for the blue badge.

Of course what a lot of people don't realise is that with MS you can go to sleep fine, and wake up with a massive relapse. Can't see, can't move your legs. It happens.

I'm posting the end of the spectrum that I have seen.

See my comment above.

Even among a group of people who all have MS the variations are huge. So someone who gets rapid diagnosis has a very different trajectory from someone who doesn't. Someone on high efficacy treatment will have better outcomes on people who aren't. People have different baseline fitness at the time it starts.

And the unpredictability is the worst part. Some days I wake up feeling fine, others I wake with severe fatigue. Fatigue can hit at any point during the day or evening. People think this means I get a bit tired. No, we all get a bit tired. Fatigue is a physical symptom like poor balance or pain or visual disturbance. It's horrible.

Ah I see. It just seemed a rather brutal reply to someone who said they were trying not to think about the potential future!

I have ms and unless you have it I really don’t think you can understand how difficult relatively easy tasks can become.
it might look like we are coping ok and managing but pretty much everything is 10x harder than it used to be, even just the thinking about how to make a cup of tea I have to talk thru in my head.

@PhilippaGeorgiouI agree. Disability has become a public property with the ill informed policing and questioning disability. Because they are tax payers. But they don’t police and question tax spending as a whole. And they don’t do joined up thinking.

DWP assessments are harsh, often wrong and overturned at tribunal. But public opinion would have a large proportion of the disabled and their careers plunged into poverty as a result of losing thousands of pounds of necessary support. With no legal redress for bare minimum support . PIP assessments are based on what you can reliably do for the majority of the time. It is relevant if you do something ‘normal’ but suffer the consequences.

The present and preceding government want to cut state payments but not in work benefits or state retirement benefits as these are unpopular. What then?

Our country relies on free labour. The true cost of caring is far greater. Are they going to introduce 30 hours free respite care so carers can return to work?

I have been a full time carer for my autistic son for 15 years including many on suicide watch. I am told by professionals what a wonderful parent I am but never offered any support.

MS is different in terms of effects between individuals and is also variable in the same person. Let’s leave it to the professionals and the court to decide who receives disability benefits.

I would expect someone with MS to look pretty much like a person without MS,as I know it's not always a visible disability, and that people who have it are affected in different ways, and have good and bad days.

I was diagnosed with fibromyalgia 10 years ago, and I still can't believe the number of people who have never heard of it. Like you,I've had people thinking it's a made up condition to excuse me being 'lazy'. They have no idea how badly it affects me on some days. I have a friend who will keep nudging me hard on my arm when she's sitting next to me, and I've asked her so many times not to as it can really hurt. Her response is always 'Sorry,I forget,you don't look ill'. Exactly!

My DD was diagnosed at 17. It explained a lot of the issues she’s been experiencing since about age 13. Her main symptoms are shoulder pain and fatigue. She is always tired. However, she is very stubborn, very ambitious and gets on with it. She is at Durham and very involved with several societies. She’s a Laidlaw Scholar and is doing a paid internship this summer. She’s an editor on the university newspaper. In other words: she’s getting as much out of life as she can.
She doesn’t tell people she has MS because she says they react differently; from saying ‘but you look fine’ to regaling her with stories of relatives in wheelchairs etc. She doesn’t want to hear it. She’s perfectly ambulatory and Durham is known for its hills. She walks everywhere. She’s exhausted by the end of the day (and is often at the start too), but works through it. She doesn’t want people to look at her differently or limit her ambitions. Just today she was talking about her future, how she wants to do a masters, and maybe a PhD. Also about family and how to get the degrees out of the way before she might plan a family. She doesn’t see herself not being able to do it.