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Share your dilemmas and get honest opinions from other Mumsnetters.

To be fed of of vile comments re disability and pip- so come on those people suggest a job for me.

294 replies

Laughydodo · 03/10/2024 23:22

Named changes for this

Fed up of the vile comments about disability including on mumsnet.
(I know it’s a minority on here). Especially against those who claim PIP.

Fed up of feeling like a second class citizen because I claim benefits.

Fed up of people saying my mental health will improve if I am at work.

Fed up of disability top trumps with people saying things like- I have this , this and this disability and I manage to work.

Fed up that some people seem be hoping that Pip is abolished and then people like us will have to find another way to support ourselves. Also so fearful of this happening.

I clung onto work for years with having epilepsy and fibromyalgia. Fighting to stay in while employers were trying everything to get rid of me. I would be let go from one job on health grounds only to start the process again and it end the same way.

I now claim pip and esa as i have up to 20 seizures a week. Half of which I lose my memory and speech (I don’t even recognise my husband at times) and are totally wiped out for half a day at least . Would love some of the smug arseholes that’s seem to think everyone can work find someone who is willing to employ me. Oh and I piss myself as well and lose control of my bowels with many of my seizures. This is without the pain of fibro coming into it all.

So come on then these people on here who think all disabled people should work- suggest all the jobs that I can do that will benefit my mental health so I won’t be a burden on the state. Would you honestly be happy to employ me?

Sorry but the self righteous comments from people who dont have a clue is really starting to boil my piss. Oh and one day it might happen to them. I was 22 when I developed epilepsy, 30 when I got fibro after having glandular fever. I would not wish this one anyone obviously but people seem to forget that disability can happen at any time.

So waiting for the jobs suggestions to begin and the list of employers that would employ me-

OP posts:
WhoStoleYourHighHorse · 03/10/2024 23:31

Gosh, you poor thing - sounds like you are having a tough time.
Do you want to work/do you feel that you are able to work or do you feel that you are being pushed into it?
If you could make a choice, is there any kind of work you feel you could do or might enjoy doing? Society only works when it works for everyone, we all achieve and contribute at different levels and we need to be understanding of everyone’s situation. Take care and walk your own path.

TheGrimSqueakersFlea · 03/10/2024 23:32

I'm convinced that pip applications are designed to break you. Some people on here think you just sign up and get free money thrown at you.

SabreIsMyFave · 03/10/2024 23:32

I'm so sorry that you are going through this. It is very tough for many people like you isn't it? This is what I posted on a similar thread earlier tonight.

I don't believe for one minute that everyone with mental health problems, and depression will be 'happier,' and 'healthier' - and will have better mental health - if they go out to work. Most workplaces are shite. Toxic and cliquey with stressful environments. And most jobs are boring and tedious, or hard work (or both!)

Being at home, doing what you want when you want to do it, waking when you want, chilling, and doing your favourite hobbies, and seeing your friends and your family when you want to - is much better for mental health and well-being for many people. (Rather than being in a boring or stressful job, working for 'the man' often for a pittance, and often with some horrible people! Like most people do.)

So if the benefits you are getting for your condition(s) - (ESA and PIP etc) are enough to live on, then please don't feel bad or 'guilty' for not going out to work. Some people are breathtakingly ignorant and rude. People on PIP and ESA are on it for a reason! And as has been said, PIP is very hard to get!

Tell as few people as possible that you are on disability allowance. Take care of yourself @Laughydodo ...

.

NezumiNezumi · 03/10/2024 23:39

Very sorry to hear of all you are going through 💐 Some people are miserable little spiters.

MSLRT · 03/10/2024 23:42

I think some people’s comments are from ignorance rather than maliciousness.

Chipsintheair · 03/10/2024 23:44

Didn't a Tory MP during "austerity" insist that anyone who couldn't get out of bed due to illness or disability, but could tweet, could get a job writing online, so would be subject to work capability assessments?

It's appalling and I'm very upset (but not at all surprised as I checked Starmer's voting record on disability benefits years ago) that Labour have reignited the scapegoating of disabled people with their rhetoric.

Laughydodo · 03/10/2024 23:51

Thanks I am not looking for work at the moment. I did manage to work till 3 years ago but each job started well with the employer saying they would be supportive and then it went downhill. Reasonable adjustments put in place then removed. Little comments all the time on how I am not trying hard enough to control my disability. Health and safety thrown at me again and again. Then processes to get rid of me would begin and I would fight them for a good year or so and then finally I would be let go.

3 years ago I was phoned by my then boss and he yelled at me down the phone while i was in hospital after I had a seizure and fallen down the stairs at work and an ambulance had to be called. He was yelling about having to contest the trustees and how I was no longer safe to have in the building. My husband took the phone told him to piss off and I decided I could not do this any more.

Since then the seizures have got worse as they think they are linked to hormones and I am in pre menapause. My fibro has got worse.

the thread with the women saying that going to work with a disability improves mental health and the women who seems to imply that disability was just something you had to get on with. Luckily didn’t catch the comment that was removed, I am guessing it was vile.

I guess I just want these kind of people who see the difficult a lot of us face and see why some of us can’t work. But I guess they have already been brainwashed to think we are all wasters and scroungers. I also thought it would be interesting if some of them could suggest a job that would actually take me on.

OP posts:
Beastiesandthebeauty · 03/10/2024 23:53

I'm absolutely delighted you get PIP ! It's almost like it's gives you your own personal budget because your disability effects your day to day life to an extent that meets a very hard criteria 💞💞

Keroppi · 04/10/2024 00:01

I'm so sorry about your health. It's great you have a supportive dh and are able to get pip. It's crazy how much you have to fight for these things and then fight against stigma and ignorance. Flowers
Tongue in cheek but thinking of some of my friends who claim pip for disabilities etc, they do some small creative freelance jobs or are content creators. Etsy, graphic design, coding, cake baking, copywriting type of stuff. I hope you have some nice outlets/hobbies not necessarily to monetise but for your wellbeing.

Laughydodo · 04/10/2024 00:11

I make jewellery when my fibro allows. I would love to be able to start selling it but I worry to much about my ESA being taken away. I would love to be able to test the water with selling it and I do know you can do permitted work but I know someone who did something similar and ESA basically said she had proved she could work. She was only selling about £20 quids worth of stuff a week and was only spending a few hours a week making it when she was able too. Her PIP also decreased when reassessed. She was really up shit creek for a while with money.

I think a lot of disabled people don’t try and go back to work for fear of it not working out and then having to go through the whole process again.

OP posts:
LoremIpsumCici · 04/10/2024 00:11

I know you meant to be supportive @SabreIsMyFave
but this:

”Being at home, doing what you want when you want to do it, waking when you want, chilling, and doing your favourite hobbies, and seeing your friends and your family when you want to”

is not the reality what life at home is like for far too many who are too disabled to work.

The reality is more
Grieving for what you’d want to do, but cannot due to disability (work, hobbies, basic day to day activities, seeing friends/family), anxiety over your poor health and meagre living allowance, struggling to keep pushing for healthcare and getting to/from appointments, frustration at being so dependent on others when you crave or miss independence, isolation from society & social events, the stigma of being unemployed and not seeking work, the pain and fatigue of the disabling conditions, realising your life expectancy is much shorter than average.

Allthehorsesintheworld · 04/10/2024 00:22

I only have fibromyalgia and CFS and I’m so glad I developed them after I took very early retirement. ( lucky break) I’ve no idea how anyone works with fibro never mind epilepsy as well.
And living with fibro isn’t “chilling at home doing favourite hobbies” ( oh how I wish it was) It’s very often curled up in a ball crying with pain or forcing yourself to walk with gritted teeth because you hope you might push through the pain and loosen up.
I can’t claim any benefits but I hope everyone who’s entitled to them gets every penny they’re entitled to.

Idcmt · 04/10/2024 00:29

I'm sorry about your ill health. And sorry that on top of that you feel stigmatised. Clearly you are entitled to your award. Flowers And anyway, PIP has nothing to do with capacity to work. It's designed to help with the extra living costs of being disabled.

I've volunteered for years representing people at PIP and ESA appeals. I agree - it's not easy to get an award and I have never represented anyone who I felt has got more than they are entitled to. It's actually incredibly sad to see people fighting so hard and struggling, using food banks etc. while appeals are delayed, assessors are negligent. Totally inhumane. And I worry about the thousands of people who just are denied and don't know how to appeal.

If I'm honest though, there is a grain truth to the mental health aspect. Not in the sense of 'just buck up and get on with it working will make you feel better'. But in that the failure of mental health provision in this country has led to a lot of people not functioning and not being able to work. And I can see that it's frustrating that the welfare system focuses on financial support for those people rather than more meaningful help.

My experience is that (and I appreciate this is purely anecdotal and I might not get a representative sample) quite a lot of people I represent are appealing solely on the grounds of poor mental health. By the time most of these reach me it feels far too late for these people to truly live a full and happy life, let alone contribute to a workplace - without generalising too much they are essentially agoraphobic and have been out of work for years and years and allowed to completely withdraw from society. They clearly are entitled to an award. And that's fine - taking it away is just going to cause financial hardship.

But I just feel so angry when I think about how they've been allowed to get into such a state and I do feel they've been failed - just giving them cash and accepting they will never work isn't the answer. For so many of them I want to go back in time and see what was going on the very first year they were like this and whether proper early intervention could have changed the direction of their lives. I wish that a PIP finding on the basis of mental health triggered some sort of enhanced mental health provision. Or maybe I don't wish that I just wish the NHS worked and people weren't allowed to disappear.

Earlier this year I represented someone who suffered from severe anxiety and depression and got a v substantial backdated award. Not my place but privately I hoped she might use it to get some proper mental health support. But then I could see that she was way beyond the point of being able to navigate the mental health system and find someone. So yes I might have helped her get a bit more money so she could (just about) survive - but a very lonely and isolated life.

This is a ramble really and off point. Sorry for what you are going through and ignore people who make you feel shitty about it.

ArseInTheCoOpWindow · 04/10/2024 00:32

I’ve got severe LC and can hardly get out of bed. I’ve got full pip, l can’t do anything at all or leave the house independently or at all apart from medical appointments.
I put on one of those threads that l spent all my pip on make up, cigarettes and posh clothes. It was pissing me off so much.
They believed me. GrinEven though I’m bed ridden. Shows the intelligence of someone who sneers at PIP!

Boobygravy · 04/10/2024 00:35

My bil had a seizure whilst working behind a bar.
The staff just carried on and stepped over him.
Then he was sacked.

MattBerningerstrophywife · 04/10/2024 00:37

TheGrimSqueakersFlea · 03/10/2024 23:32

I'm convinced that pip applications are designed to break you. Some people on here think you just sign up and get free money thrown at you.

That pisses me off when I see newspaper headlines saying ridiculous stuff like “get benefits from the government for having headaches”

LoremIpsumCici · 04/10/2024 00:41

MattBerningerstrophywife · 04/10/2024 00:37

That pisses me off when I see newspaper headlines saying ridiculous stuff like “get benefits from the government for having headaches”

Me too. And they publish one weekly. Always the same sort of headline “You can claim up to £800/mo for these common health conditions…”

Grrr. It’s ableist propaganda imho.

LoremIpsumCici · 04/10/2024 00:41

Boobygravy · 04/10/2024 00:35

My bil had a seizure whilst working behind a bar.
The staff just carried on and stepped over him.
Then he was sacked.

oh that makes me so angry! He could have died.

Boobygravy · 04/10/2024 00:51

LoremIpsumCici · 04/10/2024 00:41

oh that makes me so angry! He could have died.

It was quite a few years back, I don’t know if it would happen now.
Unfortunately this attitude meant my bil never had a job for long because of his seizures.

XChrome · 04/10/2024 01:11

Laughydodo · 03/10/2024 23:51

Thanks I am not looking for work at the moment. I did manage to work till 3 years ago but each job started well with the employer saying they would be supportive and then it went downhill. Reasonable adjustments put in place then removed. Little comments all the time on how I am not trying hard enough to control my disability. Health and safety thrown at me again and again. Then processes to get rid of me would begin and I would fight them for a good year or so and then finally I would be let go.

3 years ago I was phoned by my then boss and he yelled at me down the phone while i was in hospital after I had a seizure and fallen down the stairs at work and an ambulance had to be called. He was yelling about having to contest the trustees and how I was no longer safe to have in the building. My husband took the phone told him to piss off and I decided I could not do this any more.

Since then the seizures have got worse as they think they are linked to hormones and I am in pre menapause. My fibro has got worse.

the thread with the women saying that going to work with a disability improves mental health and the women who seems to imply that disability was just something you had to get on with. Luckily didn’t catch the comment that was removed, I am guessing it was vile.

I guess I just want these kind of people who see the difficult a lot of us face and see why some of us can’t work. But I guess they have already been brainwashed to think we are all wasters and scroungers. I also thought it would be interesting if some of them could suggest a job that would actually take me on.

What thread is this? I'd like to tell them some hard truths.
I totally agree with you and empathize with your situation.

XChrome · 04/10/2024 01:15

LoremIpsumCici · 04/10/2024 00:11

I know you meant to be supportive @SabreIsMyFave
but this:

”Being at home, doing what you want when you want to do it, waking when you want, chilling, and doing your favourite hobbies, and seeing your friends and your family when you want to”

is not the reality what life at home is like for far too many who are too disabled to work.

The reality is more
Grieving for what you’d want to do, but cannot due to disability (work, hobbies, basic day to day activities, seeing friends/family), anxiety over your poor health and meagre living allowance, struggling to keep pushing for healthcare and getting to/from appointments, frustration at being so dependent on others when you crave or miss independence, isolation from society & social events, the stigma of being unemployed and not seeking work, the pain and fatigue of the disabling conditions, realising your life expectancy is much shorter than average.

💯% this.

mm81736 · 04/10/2024 01:19

This reply has been deleted

Message deleted by MNHQ. Here's a link to our Talk Guidelines.

letthemalldoone · 04/10/2024 01:25

Laughydodo · 03/10/2024 23:51

Thanks I am not looking for work at the moment. I did manage to work till 3 years ago but each job started well with the employer saying they would be supportive and then it went downhill. Reasonable adjustments put in place then removed. Little comments all the time on how I am not trying hard enough to control my disability. Health and safety thrown at me again and again. Then processes to get rid of me would begin and I would fight them for a good year or so and then finally I would be let go.

3 years ago I was phoned by my then boss and he yelled at me down the phone while i was in hospital after I had a seizure and fallen down the stairs at work and an ambulance had to be called. He was yelling about having to contest the trustees and how I was no longer safe to have in the building. My husband took the phone told him to piss off and I decided I could not do this any more.

Since then the seizures have got worse as they think they are linked to hormones and I am in pre menapause. My fibro has got worse.

the thread with the women saying that going to work with a disability improves mental health and the women who seems to imply that disability was just something you had to get on with. Luckily didn’t catch the comment that was removed, I am guessing it was vile.

I guess I just want these kind of people who see the difficult a lot of us face and see why some of us can’t work. But I guess they have already been brainwashed to think we are all wasters and scroungers. I also thought it would be interesting if some of them could suggest a job that would actually take me on.

You should have taken a disability discrimination case because that is appalling!

I'm so sorry that you suffer so much on a daily basis! I have a sibling with epilepsy who is now late 50s and has never been fit to work. The seizures improved massively to none at all in their 40s ( I believe they are linked to hormones too, as the first ones were aged 7, then came back at 14), but they had regular multiple seizures until then, sometimes hundreds of petit mal ones in a day, and other times grand mal, sometimes several a day. Ran away, was totally confused, out of it for hours afterwards, wet themselves, injured themselves. Had to wear a helmet daily to protect the head.

Never been able to learn to drive either, or have a partner. We reckon there are some LDs as well but back then they were never diagnosed.

My parents were carers for my sibling but they both passed away nearly 20 years ago. Thankfully this coincided with a reduction in seizures and they can live independently/cook/shop etc.

Sibling drives me mad with their behaviour and I am often impatient but I do whatever I can to support them, unlike one other sibling who has gone NC with said sibling and with me and my family because I called her out on her behaviour. I do think sometimes, "there for the grace of God..." so I try very hard to tolerate the irritations!

I hope your health improves post menopause x

stormee · 04/10/2024 01:28

@XChrome she was trying to be nice and supportive. It's impossible to understand just how hard it is to be in the position some people are. But you know what her intent was

BooneyBeautiful · 04/10/2024 01:29

Allthehorsesintheworld · 04/10/2024 00:22

I only have fibromyalgia and CFS and I’m so glad I developed them after I took very early retirement. ( lucky break) I’ve no idea how anyone works with fibro never mind epilepsy as well.
And living with fibro isn’t “chilling at home doing favourite hobbies” ( oh how I wish it was) It’s very often curled up in a ball crying with pain or forcing yourself to walk with gritted teeth because you hope you might push through the pain and loosen up.
I can’t claim any benefits but I hope everyone who’s entitled to them gets every penny they’re entitled to.

If you are still working age you could claim PIP, or if you past retirement age you could claim Attendance Allowance. Neither of these are means-tested benefits.