To think our lives are over and we will be judged (disability)

[Plopandflop]

Names changed

I have epilepsy and narcolepsy. I managed to work till about 3 years ago but it all got so bad I had to leave re illness. I managed to do a small part time craft business but I still get ESA as it’s classed as permitted work as I am in the support group. This is all I can do without literally floping. My parents both thing I should give it up completely as I don’t really managed to do much else. I am 44

my husband is a teacher and has always brought in and ok wage and we cope

after struggling for over a year with pain, weakness and memory and having to go part time he has been diagnosed with progressive MS. It’s just a matter of time before work goes completely as he is really struggling now. He is 49

that’s it isn’t it. A life on benefits and a lifetime of being judged. Everyone I see a post on here about sickness benefits or a post on Facebook or the paper I want to throw up. I know some people will say “but we meant those who really can work but don’t but let’s face it we are all thrown in the same category as a burden to the tax payer.

we have a dd who is 12 and I worry for her so much

just feel like life is over.

Ignore those who judge as best you can, the issue is completely theirs.
My mum eventually TOLD my dad he needed to apply for a blue badge (which he got). He works but gets PIP, and was hobbling, bent over in pain sometimes during flare-ups, from the car to wherever he was going because he was so worried about using a disabled space and getting comments of how he wasn't that bad, etc.

@Plopandflop I'm really sorry you and your family are in this situation. I have MS and was on ESA for a period of time (after a massive relapse) then managed to get back to work. I'm honestly not sure how long I will be able to work and I am planning towards a change to self employed working from home but even that depends on progression.

We are very reliant on DH earning so it must feel like the rug has been pulled out from under your feet. I get very angry when I read your story and the feelings it brings up for you. I understand your feelings and I hate the fact that people judging disabled people is adding to our stress. I also hate that the NHS delays are adding to ill health for the population as a whole. I don't think the people judging understand that they are one accident or bout of illness away from joining us, nor do they see that lengthy delays for diagnosis and treatment are actually CAUSING permanent disability for thousands of people in Britain.

Please also speak to the school, most schools want to include all children in all trips and events and are able to financially support those who are in this position. It might also be worth speaking to your husbands MS nurse as they should be able to help with what’s available for you x

You are exactly the people the benefit system is there for! And I am judgemental towards people who just don’t want to work - genuine people like your family could have much more benefit money paid to you if it wasn’t for the people who take the piss! Plenty of people like to make out they aren’t there but after a lifetime of watching two relatives work for DWP and 12 years teaching in an area with very high unemployment, I can assure you they are.

I understand what you’re saying and how you feel. But you are likely to get very few supportive comments here in comparison to ableist people who don’t understand. I suggest name changing after this thread

I'm in the same boat and have been for many years, easier said than done I know but I've learned not to care.
I know people judge me if I go out, or on trips away, or dare have something nice, but those people would judge if I did absolutely nothing too.

Your DH needs to speak to his union and find out about retiring on grounds of ill health. Teachers pension used to be very good at this regardless of how long your service was.

That is naive I'm afraid. I wish it were so. When I wasn't in work I was studying for a new profession but from the outside it probably looked like a lifestyle choice. MS is a classic example of an invisible condition. On the days I'm stupid enough to say I'm feeling really unwell the first thing people say is You look really well though!

And I know they are trying to be encouraging but it's hard not to internalise it as We don't believe you, you're exaggerating etc.

Hard to do but stop earning what other people think. Your doing what work you can and you will need all your energy to support dh. There's a massive difference between choosing or preferring life in benefits to having an illness and having to use the safety net that is illness benefits

You could also look into help for dd in future as she probably would become classed as a young carer when dh become more poorly.

Ignore them op, people will always find something to judge. I work but earn minimum wage and the way people talk about "minimum wage staff" on here you'd think we were another species.

I just remembered, there's also another thread going about how awful customer services is these days, I've not even clicked on it because I know it'll piss me off!

genuine people like your family could have much more benefit money paid to you if it wasn’t for the people who take the piss! Plenty of people like to make out they aren’t there but after a lifetime of watching two relatives work for DWP and 12 years teaching in an area with very high unemployment, I can assure you they are

Maybe read the room and leave that sort of rhetoric for the benefit bashing threads? The rate of fraud for disability benefits is v low. So low for PIP that it is recorded as 0%.

I won't engage further as per the advice I gave to OP.

OP I'm autistic and have various mental health issues plus burnout.

I don't actually receive benefits as I've been turned down for PIP twice but I haven't worked properly for over twenty years.

I have certain family members who judge me but now my mother is no longer here I don't ever have to see them again. My friends don't judge me and if they did, they wouldn't be friends. I used to feel judged because I spend far too much time on MN but I'm fairly immune to it these days. It seems that some masochistic people come on here to say how ashamed they are of not working and I'm not sure whether they're seeking validation or they just want to add to their shame. You don't have to tell people your business on here or in real life.

I don't feel like a second class citizen because I don't feel that our value has anything to do with work. Let's face it, most people work to earn money for themselves and wouldn't work if they didn't have to. Why then should people claim some sort of moral superiority? Maybe if life was a bit more balanced and people weren't under so much pressure they wouldn't become ill in the first place. The problem is that the people who judge are insensitive and don't have the same depth of emotion and empathy so they're not the ones who become ill. I imagine you're a far better person than they are.

I didn't mean you're masochistic btw...it's just something I've noticed over the years.

What craft do you do op?

This. He should start talking to his union (the paid officers, not his school rep) about this. A degenerative condition like MS is exactly what should get him Early Retirement Ill-health. Tell him to start talking to them now.

Get your husband into the union ASAP if he isn't already. He'll want to try to secure a medical pension for his MS, and they can assist him with that. He'd be mad to do it any other way.

For example
https://www.wesleyan.co.uk/pensions-and-retirement/teachers-pension/tps-ill-health-retirement#:~:text=If%20you're%20unable%20to%20return%20to%20work%20due%20to,and%20without%20the%20usual%20reduction.

OP, as soon as you see a thread on here about disability press ‘hide’.
they bring out the real nasty cunts, and you don’t know if they are lying or not. theres Plenty of lovely people in this world.

Ignore me if I am way off the mark but would your husband be able to manage tutoring online for a few hours a week to increase your income? Or would that not be allowed on benefits?

Anyone who judged someone either epilepsy or MS for being on benefits, really had no understanding of real medical issues and must have the IQ of a potato. They really aren't worth your time.

I have illnesses, nowhere near as serious as your or your DH, the few things I've learnt (a) to hell with other people's opinions and (2) you need to stop forcing yourself to do more than your body is able to - I understand that urge to, I did it for long enough - but there's no point pushing yourself and ended up feeling exhausted all the time - better off conserving energy so you can enjoy the times you really need to and (3) be kind to yourself and take it easy.

I’ll only respond to point out that what is identified and recorded is often a VERY different percentage from what is actually happening. In most things, not just benefits! My local authority, for example, recorded 5 violent incidents in my school last academic year. We had more in any given week, but posting those stats looks bad.

The OP and her husband should have more help than they are currently receiving and calling people who want the system to be more stringent, based in reality and perhaps more helpful to those in genuine need “benefit bashers” isn’t helpful either.

My favourite thing to do if I'm in contact with people who are sneery at the thought of socialising with such a underworld cretin as me a benefit scumbag is to pretend I have an absolutely insane job.

Like totally mental....if they don't know you well enough they can't call you out on it, but it's obviously shite. Even better when your friends are in on the game.

I met a hideous woman at a friend's NYE get together who was just blasting all night about what school I was at (I left 30 years ago) what uni I went to, who I'd trained under etc etc. And boasting about her amazing job and lifestyle (which to me sounded completely made up)

So I just told her I ran an unbelievably successful chain of gourmet baked potato shops, it was sooo well run that really I was able to back seat manage now. 2 friends jumped in and agreed.

I also have a glaring deformity on my face....obviously I got that whilst on a team building trip diving in Egypt with the team who are looking to open stores in Africa and the Middle East.

I'll never see her again, so it brightened up my night.

I take my fun where I can get it.

With respect, not judging isn't good enough. Those who do judge are plentiful and vocal; and it is almost always left to those struggling with disability to defend their position. How about some of those who aren't disabled doing some of the shouting too? If you sit in silence whilst people are damning those with disabilities you are part of the problem. It's enormously hard living with disability. It's an absolute nightmare if you need benefits to which you are entitled, but which the authorities seem set upon denying you whilst the general population label you a fraud if you do manage to get them! It's astonishing how many people know a friend (?) or relative defrauding the system, so everyone must be the same - it like a parody of "I'm not racist because I know someone who's black...". "I'm not an ableist bigot because my sister in law is claiming disabled benefits and I know for a fact she shouldn't". And then people tell you (probably sensibly) not to discuss things with anyone else, which makes it look like you are hiding something. Sometimes people just can't win.

Take faith that only vicious c*nts make the most noise, most people are decent and have compassion, but to listen and read social media ( of which MN is part of ) You'd think every person in this country wanted to execute everyone on benefits and drown asylum seekers in the Channel, the truth is nasty people will always speak the loudest, like all bullies.

Practical advice, for the MS reach out to the many support groups out there for your husband, just as you are seeking out epilepsy support and narcolepsy support groups, and I hope you both are seeking out mental health support, especially as you have a child. In fact your child might benefit from young carers support groups also.

Lots and lots of people still care, they really do and wont judge.

Oh op I’m sending a hug. You’re not alone feeling this way.

mumsnet really is a place of punching down at times and let’s be honest it’s the internet, the people who’d have you believe they’re earning 6 figures and have a garden with stables could be someone simply living out an alternative reality because they’re bored of the drudgery of every day typical life. Ignore it all.

Im on benefits and get carers allowance for a child who would require 2:1 care if he was in a residential care home for children. Instead I accept a measly 82 quid a week to ensure I’m home when school can’t cope instead of working a job that (would also be scorned at for being NMW, but regardless was a job) but I loved. I loved my clients, my colleagues, I loved being the staff member who was teaching apprentices how to do their job with empathy and pride. I miss being Lwrenn who had a life that wasn’t being punched in the face regularly from a distressed child acting out. But I’m apparently, according to the benefit bashing threads enjoying life as a woman of luxury, being a sahm. Spending the tax payers hard earned cash in b&m or whatever they think we do.

The problem with the benefit threads is the posters who believe they’d never need benefits. Life is so unpredictable that attitude is stupid unless you’ve a family with huge wealth. And if you’re that lucky to have that certainty then just shut up, count your blessings and fuck off.

I do what I can to give back, I donate everything from uniforms and give to food banks, I do cooking and cleaning (I do not accept any payment besides a cuppa and a chat when im done) for older neighbours. During the pandemic I bubbled with a neighbour who had fallen so I could put him to bed and feed his cats. Another neighbour has just had a pacemaker fitted and I’ve been doing his laundry. I appreciate and I am grateful I don’t have to work with my dc needing me but I am so sick of reading these threads and feeling like a burden to all the higher earners who will never know how hard it is to read constantly how little you are considered to society when I have spent a life trying to do things to help other people. It’s soul destroying.
I am very much a “do gooder” as people like me were called, from making up lunches for school holidays in youth centres to collecting blankets for kennel dogs and because I can’t work I’m just seen as someone that people would have washing cars for no wages simply because I’m not longer earning. It’s humiliating to be so poorly though of from people who may pay taxes higher than I ever have, but have zero compassion for others. But the first reply to your post nailed it, ignore.

You will be judged by dickheads. Anyone with a heart will feel extremely sorry for you and glad that you live in a country with a benefits system which will ensure you and your family are looked after.