Let's share the reality of having a disability/long term health condition in the UK in 2024 - I'll start

[Startingagainandagain]

I have quite a few threads where people like me who live with a disability/health condition are bashed for apparently having an easy life and are a constant target for government.

So I thought it might be interesting to share the reality of what life can be for many of us.

This is my week so far:

• having to ask for help from a food bank for the 1st time ever as January has been particularly tricky
• receiving a text from PIP assessors today saying that I need to attend yet another assessment miles away (when I have difficulties using public transport) to get my PIP renewed after 3 years. Last time I had to go to the tribunal stage to win my award and it took months
• having no money whatsoever to spend until next pay day in 9 days
• worrying about my job: I work part-time but my health took a turn for the worse a few months ago and I had to take some sick days. I was referred to occupational health and I am now worrying about the report that has now been sent to my employer and what happens next. My employer has been unsupportive so far. I have had happen in the past when employers tried to push me out the minute they saw I was struggling with my health
• I am on waiting lists for a diagnosis about another condition and that will take months if not years.

I live on my own, I work part-time and PIP is the only benefit I receive. I was so down when I was sick a few months that I even consider ending things but the mental health crisis and my GP got me out of this black hole.

So anyone else wants to share what life can be like when living with long term health conditions so we can try to challenge the toxic narrative that seems to be going around these days?

I know my situation is even not the worse as I am lucky to have a good GP and I am able to still work so I cannot imagine how worse it is at the moment for so many people....

Thanks for being so brave and sharing this. I really hope you get all the help you are entitled to.

I have cancer. Chemo didn’t work and surgery is not an option. I have been waiting since November to start immunotherapy but the Scottish Government hasn’t improved it yet. I have lymphoedema in my legs and can barely walk. I hoped to spend my ADP on heating but it’s now going on private lymphatic drainage massages.

I also think it's important to normalise disability and long term conditions. I think the 'public' perspective is actually a lot like you have described: that people are struggling, are on benefits of one kind or another, are not able to work. But there are also lots of 'invisible' disabilities and illnesses amongst people who for all appearances sake look like they are doing just fine in life.

I have a long term condition (technically would be classed as a disability). It affects me most days, in a sense of, I don't feel well most days. But I work in a prestigious professional role. I have a financially comfortable life. I have hobbies. I travel. I am parent just like everyone else at the school gates. I did a 9 day walking holiday last year and (by the grace of god) managed it without a single flare up until the very end - was genuinely worried I'd be shitting myself on the side of the road most days. I look relatively fit and healthy (and I guess I am relatively fit and healthy, other than having a dodgy digestive system and other related issues). People often assume that if you look well and you're doing all the right things in life and are 'successful' that you can't possibly be ill. I had to take a period of time off from work early last year and I still get a lot of eye rolls from my line manager about it because I think they don't really believe I could be unwell enough to need time off, because I seem 'healthy'. I don't fit the stereotype of someone with a disability/long term condition.

Generally, other than feeling a bit rubbish most days and needing to pace myself, the only thing I can say I've encountered that was an issue has been medication stockouts. I take about 10 tablets a day to manage my condition and a couple months ago, the medicine I take was completely out of stock everywhere in the UK for a month or two. There's only one medicine in existence to treat my condition, so it's that or nothing. So I had to go without and wait, which was a pain, but thankfully I only needed to wait a few weeks.

So that's not to say that your experience isn't a valid one, it absolutely is, but there are also lots of people also out there who are living what look like perfectly standard, usual lives while managing disabilities and illnesses who don't necessarily 'fit the bill' of what I think the public (and the gov't) classify as 'disabled' or 'ill'. And while it's no doubt 'easier' as in less of a struggle and less of a PITA to not have to jump through hoops, it's also a lived experience that many people don't talk about. For many, you're either visibly unwell/disabled or you're fine, but it's not that black and white.

People not giving a shit about whether my critically vulnerable household member dies.

When everyone thought they might die of covid, look how differently everyone behaved. Now its only about 1.5 million (by medical condition, not age), we can't even rely on hospitals to be safe

(And no, before the tedious poster crops u, it was not just the same before covid and no I don't want another lockdown

I just want clean air in health settings, and a bit of acknowledgement of how the majority choices come at a price of making life really, really suck

My reality is that my life has changed forever, I've worked since school and sixth form.
My life was turned upside down since trying to commit suicide twice in 3 years.
I have been left with life long and limiting disabilities from secondary issues from ITU/ILLNESSES.
I have neuropathy all over, I have spinal cord injuries from my positioning in ITU. I now have severe heart damage due to sepsis ( atrial fibrillation, heart attack) I had prinzmetal angina before.
I have stage 3 kidney disease due to be in complete renal failure requiring diyalsis.
Lost use/muscle from my left leg due to gangrene ( in ITU).
On top of all this I still have long standing mental health conditions.
Do people really think disabled people enjoy being on benefits rather than working? We long for a "normal" life.
I'm on pip (enhanced for both), EESA, and UC top up ( husband works full time).
Oh I also have a motability car - but I suppose I'm sponging off the tax payer and I shouldn't have any quality of life at all and should sit in all day.
I'm sick of the stigma and judgment of entitlement, just because many people are not disabled.

Thank you everyone for sharing your stories, I really appreciate it.

I have my meeting with HR later on this week to discuss how they can 'support me' after the report form occupational health.

One thing that is really draining me right now is having to constantly justify myself and explain how my health affect my daily life.

It is really intrusive sometimes and I just wish people and the system in general was more understanding. The last thing I want to do is discuss over and over again my mental health issues and physical limitation and the recent episode of suicidal ideation. It is just feels like every day I am being slowly stripped of my dignity.

I am more than my long term health conditions but I just need a little bit of extra support so I can continue to contribute and lead a decent life.

It baffles me why disabled people have become such a 'target' these days.

2 years and waiting to see a consultant

I really feel form you OP and this government really are targeting the wrong people. My husband is going to have to get a part time job (hoping my employer will take him on this Summer cause i doubt anyone else will). He lost his pip during the pandemic and we can't afford to live on my wage forever. I just hope he can cope with it.

He had was supposed to have an appointment that we were hoping would diagnose one of his issues but it's been cancelled due to strikes. He had already been waiting ages for an appointment.

@Startingagainandagain disabled people have become a target because of a very deliberate demonisation of them by government and right wing press. You don't have to look very far to see people angry at the benefits and "free cars" that they have been led to believe disabled people receive. My husband has a mobility scooter, and it's amazing the number of people who think he was given it by the NHS, when it actually cost a couple of thousand pounds of his money.
I have been retired on ill health grounds because of my disability. It's been hard to come to terms with the fact I won't work again.
I can highly recommend this book, hugely eye opening:

https://www.amazon.co.uk/gp/aw/d/B07RVJX2Y5/ref=tmmkinnswatch0?ie=UTF8&dibbtag=se&dib=eyJ2IjoiMSJ9.VHNZYSk3dY1DQpcUHJxwyhgZ-pn0ebCRZbWM9GBPvXd0xC2wGPnBg2bTkE0xN0Ff0IlxH_bfyGPA08Jeor08Ph6h1Ben9tSQCnLSstJkJxPo2qySbTq39tli2Fy2D54vMqEQnyErxTMvuQXkok5eSshtGx5-vUr8Ut5OQd-helb5Kj9mAwWgu9Rd-de96LcAuX-5hZkrIokkRUKh3wxogg.a0IT2SmfF1ToQRrdcYHA6xwnIguzwLVqAPBKrIGNGVw&qid=1705492287&sr=8-1

Fibromyalgia and Chronic Fatigue have shrunk my life. Limited how far I can drive, how far I can travel on any transport and limited how long I can stay on my feet. Every walk ( even as far as the village shop) I have to remember I’ve got to do it home again. Many a (slow) dog walk I’ve considered lying down at the side of the footpath, just in the hope I’d feel better when I stood up again.
GPs are useless with chronic pain. One would only do phone appointments even pre Covid. Twice been hospitalised by GPs giving incorrect medication instructions.
Pain today is horrendous, up there at a 9, but have to keep forcing myself to stretch, walk around the house, anything to stop seizing up.
I know compared to many it’s a minor condition, it’s only pain and the crippling fatigue which I don’t even have words to describe, but it’s fucking wearing and I hate it.

This is such a great thread, thank you.

I feel like I fall through the cracks. My upbringing is such that I’ve always felt I just have to ‘get on with things’ and therefore I hide a lot about my disability, which is an invisible one (at least a lot of the time). People usually consider me very intelligent and therefore ‘can’t possibly be disabled’, which is mind blowing. And on the occasion where I do need to raise it, either personally or in a professional capacity, people think I am lying.

I have had it my whole life and I am just used to adjusting everything myself to give myself the best chance. I have to be very careful with sleep and stress, hydration and food. Amongst other things. When I’m symptomatic, it’s exhausting, but I have learned to try not to complain and just get on with it.

Understanding would go such a long way. There are things I can’t do, and there are things I certainly shouldn’t do, and people are so quick to judge. There are side effects from medications. There is living with the knowledge of a lower life expectancy. Considerations around pregnancy, hormonal changes, menopause.

I find stigma to be huge. And having a life-long condition can be very isolating.

I’m immunosuppressed due to taking biologics for an autoimmune disease. Disease is invisible so I get told I don’t look sick as if that takes away the illness.

I currently have Covid and it took a day of arguing with 111, my GP, and the hospital in order to get antivirals and that was only because DH intervened on my behalf as I was too sick to phone and argue.

Ive had to turn down work promotions as I can’t handle longer hours.

I lost my lower leg in my early twenties after an accident. I developed osteoarthritis in my twenties in my knees,spine,hips. I got postural tachycardia in my 30s and then finally got a diagnosis of Hypermobile ehlers Danlos syndrome.
In August 2020 I pushed myself off the side of a pool from a seated position into the water. I tore my bicep in several places and caused my shoulder to sublaxate. This year my shoulder has dropped several cms and I am due to have a tenotomy (sp), arthroscopy and try to repair the tears that haven’t heeled. My surgery in December was cancelled due to drs strikes. All of this from doing something so basic that people do without even thinking about.
My body is not reliable. Thats the worst thing about being chronically ill. I don’t know how I will be from one day to the next. I don’t know if opening a door at a funny angle will cause a joint to dislocate. I don’t know if I will be in for a night of shooting nerve pain from my stump. I can’t make plans. It’s utterly utterly exhausting and so very demoralising.