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.

If you don't think the disability benefits system is stringent, that is because you haven't been through it.

My DH had a reasonably "easy" time in that he was awarded highest rate PIP without having to go to appeal etc. But the process was exhausting and dehumanising, even thinking about it makes me a bit emotional.

And we will have to go through it again in around 7 years. I just hope I am still here (I'll be pushing 70). The thought of leaving my DH alone to go through that sometimes keeps me awake at night.

You have no idea.

When he ends up off sick if he's not coping, get referred to occupational health, hopefully they will recommend he can't be employed and he will get ill health retirement (please don't tell me he's not in TPS). Hard times, good luck.

Thank you for sharing this OP. I honestly feel that this will be closer the situation for most disability benefit claimants than the sensational reporting of those who are lazy and raking it in.

To be honest people will judge you whatever... Working mum, non working mum, disabled. Your husband is a teacher as I was for a long time and there a plenty on here that will be convinced he does sweet FA and leaves at 3.

I know it's easier said that done but just focus on you and your family and what you can do from here on xx

Just want to add that I've never been on benefits (for which I consider myself lucky, not superior), so I promise you, there are people out there who have never been in your position who still won't judge you.

I hope you and your husband can save all your energy for doing lovely things with your daughter rather than forcing yourselves to work a few hours a week for no gain.

But why? No one on that thread is talking about people with disabilities. They are talking about the genuinely challenging situation of rapidly rising benefits bill and people who don’t work and never work and expect the tax payer to fund this.
Just like most people who are concerned about immigration are generally not concerned by people fleeing for the lives but those who are economic migrants paying to get here illegally.

I’m genuinely puzzled as to why people can’t understand that some people absolutely fiddle the system and others do not and most people who complain / raise an issue are not racist/ ableist etc. You can’t just ignore a problem because only some people are fiddling the system.

Very few people would have a problem with benefits supporting a family that have a history of working and then a horrendous set of challenging medical issues that affect both adults such as yours.

if I was you I’d see if your husband can get a permanent job in schools though. He does not to have to declare his medical issues until after any job offer. Then the school will have to make reasonable adjustments and when/if he can no longer work, he can retired early which would be on a full pension. No one would argue MS is not a condition covered by ill health retirement and you’d get the pension paid up.

Best of luck to your family.

God, some posters really don't read the room.

@Plopandflop sending you solidarity. Some posters have given you really good advice. I hope and expect things will turn out better than you think. My DH and I have a decent life despite the many challenges.

God, some posters really don't read the room.

they really don’t but at least their username is apt.

A life on benefits and a lifetime of being judged.

Anyone who judges you isn't worth your time. Fuck 'em.

@Skipthisbit But why? No one on that thread is talking about people with disabilities. They are talking about the genuinely challenging situation of rapidly rising benefits bill and people who don’t work and never work and expect the tax payer to fund this.

How on earth do you make that out? The thread - and the programme itself - are talking about sickness and disability benefits, not about benefits in totality. And it's funny how many of those self-same people whine about the unemployed, the sick, the elderly and the disabled getting benefits, then appear on threads where they bemoan having to pay VAT on their private school fees, how to get around losing child benefit because they earn too much, or why they don't get enough free hours at nursery.

if I was you I’d see if your husband can get a permanent job in schools though. He does not to have to declare his medical issues until after any job offer. Then the school will have to make reasonable adjustments and when/if he can no longer work, he can retired early which would be on a full pension. No one would argue MS is not a condition covered by ill health retirement and you’d get the pension paid up.

So in a nutshell you are advocating that the OP's husband lies in order to qualify for employment benefits to which he probably won't be entitled if he lies anyway??? You are correct that he doesn't have to declare any medical issues until after a job offer (or at all) but he has already had his health impact on his working life (so they will find out with references), but if he fails to do so it may be a disciplinary offence for which he might be dismissed. Reasonable adjustments are, by their very nature, only made if they are "reasonable" - no employer MUST make them, and there is no guarantee an employer can make them. And there is also absolutely no guarantee that he would be able to obtain an ill health retirement on a pre-existing condition - in fact that is generally a specific exclusion.

Remind me never to take advice from you on morality or employment law.

@Ivymedication Props to you but now I really, really want a gourmet baked potato…. Peppered mackerel and black truffle mayo?

@Plopandflop I kept changing my mind whether you were UR or not. Reality vs supportive.

reality is that some, very loud people who think their opinion is required, will judge you and make sure everyone knows about it. But it is really only some. Most people either have the empathy naturally or get enough life experience under their belt to understand that life isn’t black and white and sometimes luck (and it is luck) isn’t on your side.

how recent is your DH’s diagnosis? Find out if there is a consultant on your neurology team with a special interest in MS, there are a lot of new treatments and trials out there but you need someone who’s passionate about it to put you forward. I was diagnosed last year but with relapsing/remitting - I know that changes things in terms of what can be offered but there are some truly amazing treatments out there. I was offered a space on a stem cell trial but turned it down because I was just diagnosed and hadn’t tried anything else. For such a big commitment (it’s proper transplant conditions) I didn’t feel ready for it. Immunotherapy so far is working well for me and has the potential to take me into the next decade without further deterioration for the sake of eight days treatment.

I haven’t even attempted PIP. I think it would be a borderline decision anyway but it’s not a static condition and I don’t have it in me to fight that hard. I’m lucky that I’d already found a wfh, part time position before my diagnosis but I doubt I could manage many other jobs anymore. Even without the mobility and vision issues I’m incredibly sensitive to temperature. My optimum functioning temperatures are about 11-20°C - outside of those and I seize up like an old car! My brain just doesn’t brain anymore!

So sorry to hear about your circumstances, OP. I know your DH hasn't been a teacher that long, but is there any sort of ill health benefit (like income protection) he is eligible for, either through work, or perhaps a private policy? Or is there some sort of ill health early retirement option?

Avoid benefits threads on here. There are always a vocal lot who can't possibly imagine anyone is deserving enough for the scraps on offer.

Also have epilepsy. I saw on the other thread you said you don’t get a free bus pass. But you do if your epilepsy is to the point where you have to surrender your driving license. I had to surrender mine for several years and had a free bus pass and also have a disabled person’s rail card. Very easy to apply. You can have the disabled person rail card even if you are able to drive. I am now well-managed enough that I can drive again.

Focus on what you can do, not what you can’t. It’ll help your mental health. I have a cousin with stage 3 cancer and she is working from home a few hours a day. Her employer has been very accommodating. Could your husband do tutoring from home remotely? I have a friend who does that and by all accounts it’s not bad money. Could you work from home? Posting on MN is not much different than responding to customer emails, except you can get paid for it. Think of what you can do, not what you can’t.

I am in a very similar situation and I just don’t tell anyone that I claim PIP (highest rates indefinitely / ongoing which is near enough impossible to get to give you some idea of things) and I don’t tell anyone our brand new car is a motability car. No one needs to know. If anyone asks I what I do I just say I used to work in marketing and now I’m retired…! (I’m 44). People are so bloody nosey. You just learn to ignore the arseholes online, they haven’t got a clue.

@CornettoNinja ha! My operating temperature range is 15 to 26 degrees, lower and I walk like a robot and higher and my brain turns to jam!

Unfortunately some people are very bad at realising that this can happen to anyone, yes, even them. Try to hold on to your self worth over the snortings of that kind of shitty person.

But also I'd say the majority of people will understand and not judge.

I think it is lesson that anybody can be struck with debilitating illness at anytime! Please don’t feel your life is over and no not everyone judges.

That’s terrible OP I’m so sorry. After ready some of the absolutely ridiculous posts on here tonight about looking poor, getting the wrong £1000 handbag, not being able to afford kids school fees and of course the benefits thread you’d think everyone was rich and couldnt get on the cable machine. No some people have real problems. Sorry I’m not usually so strident but really upset by how privileged some of the posts are tonight.

I too have epilepsy and 18 months ago I handed in my notice as a nurse, and left the nursing register due to how the job was affecting my health. I’d been pushing myself on and on and on, knowing the damage I was doing to my health, and after one particularly scary hospital stay I realised that I had to put my health first.

I went from bringing home just under £2,000 a month to now only receiving £300 a month in benefits. That £1,700 drop in income a month has been incredibly difficult.

My husband is also a teacher and we can survive on his wage….but that’s what we do now, just survive. I’m also only 41.

I’m pretty sure I get judged for “not contributing” to the household and not working, and I’m sure there are many who think my £300 a month in benefits isn’t justified.

It’s all really crap and I sometimes feel scared by what the future may hold. I dread to think what we’d do if my husband had to stop working.

Lots of sympathy to you OP.

I hope people wouldn't judge you.

I used to work in the criminal justice system and there were a shocking number of people coming through the system - able bodied, young people - who would laugh when they were asked whether they had a job. They didn't work and they didn't know anyone in their personal lives who worked. I believe these are the people that are being referred to in posts criticising the benefits system - people who are capable of work but who choose not to do so. The "scroungers" of daytime TV. Not people who would love to be able to work but can't.

Unfortunately judgmental statements are often sweeping, try to avoid those discussions if you can. The economic disasters of the last decade have unfortunately led to a situation where a lot of people are struggling, which inevitably leads to resentment.

Yeah and they are usually the same nasty cunts that moan like fuck when something happens to an elderly person like a fall because they are left on their own.
Then they are all "where was their family"

AT WORK you stupid fuckwits where YOU wanted them to be

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)

S’up @Jabtastic

i think the temperature thing was one of the symptoms that surprised me the most but made sense looking back and putting things together.

Have you sought medical retirement?

https://www.rcn.org.uk/Get-Help/RCN-advice/ill-health-retirement-nhs-pension-scheme

I don't judge, OP. I'm very glad there's assistance for you. It would be an awful situation if you were left without. It doesn't bear thinking about.

Make sure you and your family have access to all you're entitled to. Your DD should not go without and also not have to answer to anyone about your family's personal and private circumstances.

Ignore idiots that have no clue and just want to bash people to make themselves feel superior. They're not, of course, and they know it.

Fuck anyone who judges you. You both have an illness and are exactly the type of people disability benefits are there to support. End of the day your family and friends will know and I'm sure they have sympathy and strangers and people on here's opinions absolutely do not matter.