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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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

199 replies

Plopandflop · 12/01/2025 14:51

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.

OP posts:
curious79 · 12/01/2025 18:13

This is horrendous - I feel for you both.
its definitely worth your husband looking at a book called the Wahl protocol. Diet is very critical to MS management. It may also help your conditions. Best wishes

Nctwotooto · 12/01/2025 18:13

I've just hidden 3 benefit bashing threads in active :(

Plopandflop · 12/01/2025 19:18

Thanks every one I just need to get it in my head that people who matter won’t judge.

I do also worry about cuts to pip and other benefits.
Who asked about crafts I make wire wrapped and resin jewellery when I can.

OP posts:
Plopandflop · 12/01/2025 19:26

I stopped reading when it got to posters rubbing their hands with glee that PIP might be cut. It makes me want to go and throw myself off the nearest bridge. If it was not for my daughter and husband I feel I actually would.

OP posts:
lakesandplains · 12/01/2025 19:28

I'd say people are kinder in real life generally - online social media type stuff seems to attract a select group of extremists on every platform sadly. Don't think that those threads represent most people, they don't. Same with the newspapers and the comments - best to spend your time on real life relationships.

MyDogNeedsGlasses · 12/01/2025 19:36

Your DH has done 3 years so can get an ill health retirement pension - push for tier 1 - which will have a very significant enhancement. You'll be able to pay the mortgage off (or buy something) and have a good amount still coming in.

9tee · 12/01/2025 19:40

You must ignore what anyone thinks/judges. Just cut them off.

Get the absolute maximum you are entitled to, including an ill health teacher pension and any associated payout.

Choccyscofffy · 12/01/2025 19:42

I would focus on the positives, that you are getting the help you need.

There are others not getting help so look on the bright side.

FriendsDrinkBook · 12/01/2025 19:50

We're in a similar position op. No judgement here.

Two disabilities in my family , diagnosed 2 years apart, meant that we now rely on benefits to live. Dh and I always worked , we were doing well , then 5 years ago it all changed. It's bloody hard , and we're still coming to terms with how quickly we have become reliant on benefits. We've had the ability and pride , of earning our own money taken away from us due to illness. It sucks.

I hope that these pip and dla bashers don't have to experience this as nobody wants to live this way. It's not a choice.

adviceneeded1990 · 12/01/2025 20:19

Just a thought and you’ve probably done this already but check the T&Cs of your life insurance - ours pays our mortgage off in event of anything terminal or severely life limiting arising. I don’t know enough about MS to know if it would come under that category as I know one type is more severe than the other but maybe worth a look.

Pookypook · 12/01/2025 20:25

For every ignorant twat judging you there will be decent people (like many on this thread) who wouldn’t dream of it. The only judgement I’ve made based on your posts is that you and your DH sound like really good, hard-working parents.

EmmaMaria · 12/01/2025 20:31

Skipthisbit · 12/01/2025 17:57

Where did I say he should lie? What a load of ableist claptrap you have spouted. The OP states that he found the job of a teacher challenging and was then diagnosed with MS. If he’d have got that diagnosis sooner, the school would have had to make reasonable adjustments and as he’s clearly good enough to do supply teaching “when well enough” - he’s good enough to be a class teacher. It is entirely possible that with reasonable adjustments, he would be able to stay teaching for a lot longer than if he had no support in supply. He has every right to a job, judged on merit, with MS and his references should not mention a medical condition. He started the teaching profession before his diagnosis and although he will have lost continuous service by going on supply, he’d still be eligible for ill health retirement once it became necessary.

Frankly how fucking dare you suggest I’m immoral! People with medical conditions have every bloody right to apply for jobs and not get shunted out to temporary roles just because they had symptoms before they knew what the true issue is. We are crying out for teachers and OP’s husband could work for a long time with proper adjustments and it would give his family some further security as his pension would be enhanced through ill health retirement. (Something I’ve negotiated multiple times in my role)

Edited

Frankly how fucking dare you suggest I’m immoral!

I was not the one who suggested that he hide a diagnosis in a profession where detailed references are a legal requirement, or where honesty is necessary; then went on to make claims that are patently untrue about both the law and ill health retirement schemes. You made it 120% clear that you were advising that he go back to a direct school environment in order to benefit from ill health retirement whilst hiding his diagnosis.

Beyond that I have no interest in you at all. So won't be responding to any further protestations from you since what you said was in your words and black and white.

Jabtastic · 12/01/2025 20:39

I think people are sadly overestimating how much pension people are entitled to after a short teaching career.

sommerjade · 12/01/2025 21:36

@Plopandflop I just don't read the benefit bashing threads
I get pip for the issues that Schizoaffective disorder & epilepsy cause me, and I work part time, but I realised today when I met up with them that because I put in such a good front even my best mates don't realise that my life is a daily struggle.
I'm applying for a new job and it has to be part time but my good friend wondered why I was turning down the chance to work even more hours?
I just couldn't bring myself to tell her the truth, that I get so paranoid if I'm in a situation with people I don't 100
% trust that I start hearing voices & having visual hallucinations. Sometimes I admit to certain things but I don't give her the full picture as she has a child and I'm scared she won't want her to see me.
And I've been friends for 30 years!!
That it sometimes takes me hours to bring myself to have a shower if at all.
That I go days without a cooked meal.
That planning a long journey anywhere really is overwhelming due to my mental health issues, and scary as I could have a seizure.
I need my relative to handle my finances as I get manic and overspend and get in debt.
Etc etc.

sommerjade · 12/01/2025 21:38

By the way yes I work part time as a healthcare support worker carer in a hospital but I know I'm too slow at my job, although I'm very conscientious, as I'm on a shit ton of sedating medications unfortunately.

CoastalCalm · 12/01/2025 21:39

Plopandflop · 12/01/2025 15:24

My husband only qualified 3 years ago so not much pension. He worked a football coach in schools before do there is a bit there but not much. Him training as a teacher was meant to give us a better quality for life and be able to afford holiday and other stuff.

Not sure if it’s the same in teaching but in Civil Service if he retires on tier 2 ill health they base pension on him contributing to 67 so it could be a sizeable figure - he needs to engage with the union now and also occupational health

TommyTupence · 12/01/2025 21:39

Sadly anyone claiming benefits (apart from pensioners) is demonised in the media and politically. It’s disgraceful

JenniferBooth · 12/01/2025 21:41

TommyTupence · 12/01/2025 21:39

Sadly anyone claiming benefits (apart from pensioners) is demonised in the media and politically. It’s disgraceful

Pensioners are slagged off routinely on here though

Nsky62 · 12/01/2025 21:54

Littleelffriend · 12/01/2025 15:42

I’m not on benefits and I wouldn’t judge you in this situation. This is a situation where benefits should be given. Maybe you aren’t giving people enough credit? Yes, some will judge but plenty won’t

Exactly, I have mid stage Parkinson’s, I can present well,, often go downhill quickly tho.
Those that know me well, know I can’t work, and other stuff won’t happen, I’m 62, live alone too

DellaPorter · 12/01/2025 21:56

If your husband is able to get his teacher's pension paid early and un reduced on ill health grounds. You hopefully will be better off than you fear .

WeylandYutani · 12/01/2025 21:58

There have been a few benefit bashing threads today. It is depressing. So people really think that badly of us?
I am not able to work, and it makes me sick there there are people out there rubbing their hands in glee that I will get my money cut and be forced to look for work. I have not worked for well over a decade. Even my work coach said I was unemployable.
Cutting my money will not give them a rebate on their tax. They are just being nasty (and I apologise in advance) cunts.

SillyQuail · 12/01/2025 22:04

My mum never worked due to disability and my dad had to retire at 50 on ill health grounds. Your daughter will be fine as long as you provide an environment where she can communicate openly with you about how she feels, and you and your DH support one another as a couple and get any external support you need. She will learn about compassion, empathy, and the real meaning of love from how you take care of one another - you're setting a great example by all being there for one another, regardless of how you support yourselves financially.

WeylandYutani · 12/01/2025 22:07

adviceneeded1990 · 12/01/2025 15:46

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.

No, that is not how it works. Someone claiming fraudulently is not taking money away from other people.
When someone is taken off of benefits, or chooses to come off of them, there is not more money for everyone else.

MistressoftheDarkSide · 12/01/2025 22:12

Standing in solidarity with the OP - and sending a virtual hug.

One or more in a series of unfortunate events can destroy lives at a stroke, and after a while it becomes harder and harder to rebuild. Sometimes, no matter how hard one tries to be positive, "practise gratitude" and all the other frankly tone deaf platitudes the "well meaning" spout, systemic and economic factors lead to door after door being slammed shut.

Employers dictate who they want to employ, and more and more people don't fit the criteria. Long gone are the days where one could rock up and charm your way into even a minimum wage job where you're willing to learn and progress, because before you get near a human an algorithm weeds you out. And that's if you are capable of work, never mind if you need support or reasonable adjustments.

I well remember a thread where Stephen Hawking was held up as the poster child to encourage even the most challenged to get a job, any job.

It's not about people devaluing themselves in their personal circumstances, it is very much more about value being solely calculated in monetary terms - that's the world we live in - maximum profit for minimum outlay in terms of creating inclusive environments.

The OP, and others in their position have a value, regardless of their perceived economic worth. They are not "other", they are you and me with a very difficult hand to play.

The world is regressing at an alarming rate in terms of humanity and compassion. So much frothing about the cost of looking after the vulnerable but not so much about subsidised bars and restaurants in the House of Commons, or eye watering bonuses paid to CEOs who are paid ostensibly to just make money for the already wealthy, or the huge corporations who own properties that they'll leave empty due to tax breaks, but it doesn't matter because it's just assets at the end of the day.

But no, it's so much easier to kick people when they're down.

Sending you all the best OP. You deserve so much more x

Purpleturtle46 · 12/01/2025 22:18

I feel sorry for people who genuinely can't work and are facing judgement due to the huge amounts of people who can work and don't. You are using disability benefits as they were intended, as a safety net, not a lifestyle.

People who care about you will know you and hopefully not judge. Best of luck.

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