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

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.

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!

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.

@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 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.

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

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.

See my comment above.

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.

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.

Was this meant as a reply to my post?

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.

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

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.

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

I have RRMS that is probably soon going to be diagnosed as having progressed to SPMS. For the first 10 years nobody would’ve been able to tell unless they knew me very well or were watching very carefully.

For the last seven years, I’ve been using a wheelchair when I’m out of the house so it’s much more obvious. I still work full-time in a big job which I love and I’m incredibly lucky to hardly ever experience MS fatigue (so far).

However, what people won’t see is that I have almost no sensation on my left side and sometimes need help to dress, can’t wash my own hair or lower body and I’m very limited in what cooking and household tasks I can perform.

I’ve learned to be incredibly organised and both my house and my office at work are very carefully planned to make things easy for me. You wouldn’t think it was done to accommodate a disability unless you knew.

How I feel about the reaction of others can change dramatically, partly depending on whether it is ignorance or maliciousness and partly on how well I am feeling myself. I’m now in my mid 50s and generally progressing to the don’t give a stuff about people I don’t know which has helped!

While I'm happy for the person you live with, if you know anything about MS you will know how incredibly variable the progression is. And there is a genetic component to progression speeds, some of which are being studied at the minute. So the person you live with is at the lucky end of the unlucky group with MS!

My friend told me very early on that they had knew more about MS than their consultants.

I would be embarrassed to write such a post highlighting such ignorance as you have. Your neighbour is entitled to not make his life a bit easier if he chooses to do so, but to compare him to this Woman, who you know nothing about, is low.

Solidarity to the MS people here. My MS was diagnosed very late which sadly means it went untreated for over a decade. My prognosis is much worse than it would otherwise be. Within the next few years I will likely lose my job. I find that working is speeding up my disease progression because I come home and go to bed. I don't advertise my illness and I think many people in work probably wonder why I get accommodations. I have to fight for them again at intervals even though they are formalised through occupational health. Sometimes the external barriers are as hard as the actual disease.

I've got ME not MS, but i do find it ridiculous that when talking about my ME to a medical professional, they always tell me how well I look. But for appointments for other things, if they don't know, I'll get told I look tired and unwell.

It's all so ridiculous. Being disabled is the worst.

I've not experienced it. I am reflecting the experiences of someone I know.

And I believe I said a while back there is no cure for MS. Over the years I have known my friend, I have done a shit load of digging, writing (in the early days) and searching. One of the first internet searches I did was in 1995 on the side effects of clonazepam (aka rivotril). No Google back then. It was Altavista.

Do you know what kind of day this woman you saw walking around the supermarket was having?