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

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.

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 🙁

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.

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.

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.

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 💗

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 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

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.

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

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.

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

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

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.

I hear you
I have Myasthenia and don't "look ill" (at least not to the untrained eye - my neurologist and close family can see the clues of ptosis/weak smile etc)

But I made a bit of piece with it earlier this summer as my mum had broken her arm and I realised as soon as she had all the plaster /sling off I often forgot she had a weak arm still.

I wear a sunflower bracelet as a gentle reminder to people and if I am somewhere busy but don't take my wheelchair then I often take a stick as a visual clue to people

@PhilippaGeorgiou interesting points thank you. Be nice to drive a brand new car and have all the holidays people assume we are having...

I don't entirely agree. I think a huge factor is the demonising of disability and people with disabilities by successive governments (including the current one). Even people with visible disability are getting the "must be faking it" treatment.

According to the new mantra we are unaffordable, living lives of luxury with multiple foreign holidays a year, exaggerating our conditions to rake in taxpayers money, and don't forget a brand new (probably a BMW or Porsche) car every three years...The purported level fraudulent claims which is constantly being claimed is in direct opposition to the fact that the DWP say that fraud is so negligible as to be 0%; and ignores the fact that many people with disabilities work etc., etc. The result of this has been to make our disability public property, giving everyone else the right to police and question our disability. Society is changing (and not just around this issue) into one that is, frankly, on the one hand jealous of the purported "benefits" disability might bring which they can't have, and on the other see people with disabilities as leaches playing the system for all they can get.

A friend has it. I was shocked because of how active he is. Also have another friend with it who is a full time wheelchair user

The thing is, everyone has limited energy and decides how to spend it. Most of us have enough for work and family. Some have enough for work, family and hobbies/exercise.

People judge when you appear to have enough energy for mountain climbing and being good company, but not for the daily commute.

And honestly it’s a hard balance at times- energy spent on looking after yourself, exercise classes, walks in the country- is repaid with better health, better disease management and better mental health. But people who are in the trenches with various personal situations and struggling to cook a decent meal don’t always manage to do that self care themselves and begrudge others managing it.

I’m struggling at the moment. Chronic illness, elderly mother and MiL, husband also needs support. Work feels like a massive intrusion on limited time for self care. I have totally let exercise slip even though summer is my best exercise time.

Sorry, that’s a digression to my own problems.

I’d polish up a sentence about ‘working hard on staying in remission’, or ‘I’ll pay for it later, but it’s worth it to have some fun/see you/keep my body moving.’. People don’t automatically understand what it feels like to be you. You have to explain.

DS1 brought a tear to my eye last week. I was admiring the wool range in a shop and saying ‘mustn’t buy any more’, and he asked if I was out of spoons for crochet these days. It was lovely to be ‘seen’.

My SIL with MS started out with a slight limp in one of her legs that within 10 years time became wheelchair bound and unable to move legs at all.
My husband’s cousin with MS struggles with walking uphill and exhaustion.
What really, really annoys me is that my MIL is one of those people who have nagged her way to a disabled pass and she calls out other people with passes who “look like they can walk absolutely fine and stop parking in my spot”. I no longer go out with her, I am so mortified.

I have 2 friends with it. One you wouldn’t know. The second usually you wouldn’t know but when she gets tired she will
drag her feet. I do know of friends of friends who are in a wheelchair so depends on the speed of progression and whether the medication helps.

MS has a spectrum as others have said. I have found that some people believe MS to only present as the rapid degenerative type and can’t accept that it can present in other ways. Like someone else has said, mental wellbeing also plays a part.
We also aren’t to know why some folk have disabled transport passes if they don’t have an apparent disability. They can be issued with a diagnosis letter, whether or not the person actually has need for the free transport at that stage of life. They might not have mobility issues now but can still get the pass. A marathon though, wow!

This is me too! I work so hard at keeping active, healthy food etc that it’s hard for people to understand. It’s even hard for me sometimes. I said to my husband the other day, I just feel so tired all the time I wish there was something wrong with me to be able to fix.

fatigue and brain fog are really getting me down these days