What do disabled or chronically ill people do if they have no family support?

[Wouldloveaglassofred]

This is really on my mind today, I have a lot of chronic health problems but fortunately a very supportive partner. I struggled so much on my own before we met with the more upsetting hospital appointments and scary episodes losing consciousness in shared houses etc, and my health has deteriorated more since those times. I thank my lucky stars to have someone who loves me, a cuddle doesn't fix everything sure but it goes a long way to making the bad days better.

If you have no partner and no other family who can or will help support you, what happens? There are so many people who don't qualify for disability benefits despite having very serious health problems. What are they supposed to do if they can't cope?

I also wonder this op. It must be awful. I've been ill for many years and now terminally ill, thankfully I have great family support, no help whatsoever from health professionals though but that's a whole other story, but it does make me feel sad for others who have no one

My child is. I cry constantly, I think the nurses think it's over my child, which it is most of the time. But sometimes I feel so dam alone, then selfish for feeling that way.
Hospital always assume you have a support network. Only once did a nurse ask how my other child was coping and me. I could have hugged him.

I have no support i only have a sister.
Do have 2 grown children but they have their own lifes to get on with.

I just do the best i can health professionals have helped a small bit for me.
But i do get a bit pufffff
if im asked do you work i say no not right now i get a reply with why not get a job.
you dont look disabled you dont look unwell.

I'm sorry you're going through this, people can be so ignorant

They struggle on as best as they can. People have no other choice.

I went through cancer, chemotherapy and major surgery. This lasted about six months. I had no human contact through whatsoever. No hand hold. No hugs.

I hugged and kissed my kids like mad. But no, my own mum had not long died of cancer and I just wanted to be in her arms.

It must be very hard. I am disabled but have a DH to help. If he wasnt here, my life would be incredibly hard despite getting PIP and having a blue badge. I have already missed things that were important to me as DH couldnt come and I can no longer manage my mobility scooter without him.

At the moment I can manage work as I can rely on him to take the strain in the evening and weekend when I just have no energy left, but I can see the future without him means I cant work and will effectively be housebound.

My mum is old and needs carers herself. My siblings arent interested in me and DS is now at uni and hopefully living life (his first question when I was diagnosed was he going to have to be my carer and not have a life. I promised him I would do everything I could to ensure that wouldnt be his future. And still endeavour to continue this plan.)

We outsource the gardening already paid from my PIP. Cleaning is the next to be outsourced when DH cant but I need to significantly reduce my clutter (which I have been doing when my health allows).

Adult social care team, carers, PAs, we have a local befriending service for someone to chat to. They ring or visit you at set times through the week, all volunteer based. Lovely service.

Fortunately I have a partner... but if anything were to happen, I am painfully aware I'd just have to put up with him cheating, lying, etc... I trust him, it's been 18 years and he hasn't... but knowing if he did, I'd be screwed is pretty scary stuff.

Without his care, I'd be in bed most of my time and at the mercy of carers coming in whenever care companies feel like it. I'd have no pets, I wouldn't work, I'd have no life really at all.

I was a single disabled and still - being- abused - by - violent - ex, parent.

On my own. With no support.

My conditions are progressive. And I've had most of them my entire life. I'm used to pain and push myself through things other people scream from.

My house is a perpetual tip, I don't do the things I did, and I'm lonely, but I've managed the best I can.

I have no idea. This will be me next year once we've sold the house. Not sure if I will or won't be better off without him.

It keeps me and DH awake at night, worrying what will happen to our disabled son when we aren't around anymore. Hopefully it won't be for a very long time, but it's terrifying.

I genuinely don't know, I have elderly relatives in the UK, younger ones on another continent and am not ready for a boyfriend. So I suppose I'd have to rely on carers.

You'd get this response 🤬 if you posted this in any of the groups I'm in, or maybe this 🤣 because we do enjoy some dark humour.

For the vast majority of chronically ill people there is nothing, if you don't have any family or friends to support you there is nothing. Maybe your areas lucky, most aren't. Maybe you're simply not seeing all the people that need these services and get turned away because their isn't enough to go around. People always like to think there is support, I think because it makes them feel better, but I know a lot of chronically ill people and there is bugger all help. This fantasy that there's heaps of support for people with chronic illness means the issue can get brushed under the rug. What happens, peopel get sicker, they have breakdowns, they spend 90% or their day in a bed in a tiny room, they lose their kids because they simply can't care for them and there's no support to help them do so.

I have a chronic illness that has worsened a lot over the last few years, i I have DC with SEN, I have an abusive ex. I know quite a few single mums that fall into this category, chronically ill, left to cope with SEN/disabled kids on their own by absivie ex. I know people who have begged for help that simply doesn't exist. What's happening to me and my friends, we're getting sicker and sicker because we're forcing ourselves to do the things our kids need and we don't know how to find a way out and are bloody terrified by the future for us and them. And I'm luckier then a lot of chronically ill mums I know because I actually have a bit of savings and I'm not having to use food banks to feed my kids. But sure tell us how there's all these lovely services to help us.

I'm chronically sick with no one , I hired a cleaner and carer I can't afford . I'm hoping I get pip and then I can afford her . If not I'll live in my bedroom and get shopping delivered, no idea what I'll do when my work stop paying sick pay . Live in a tent ?

I'm one of them. My long term partner AND my best friend both scarpered just after I was diagnosed with what is a progressive, disabling condition. I have no family and no children. I'm in my 60s so parents long gone.

I have three friends, two of whom live over 100 miles away.

Soon I am going to be in very very dire straits as if my condition gets any worse I will be entirely dependent on another person, and there isn't one.

Actually some of these responses have made me think perhaps I should volunteer in my area.

It is a real worry our kids don’t have much family and I’ve two with autism. One is very high functioning and the other less so. It is a real worry but we try to live for now and teach, teach, teach life skills.

I have a life limiting illness, single parent with a disabled child. I wonder what will happen to her after.
I keep working because I can't afford not to but I'm permanently exhausted.
There is no one to share any of the load.

For care, social services if they qualify or they get by cutting everything other the absolute basics from their life or use a willing friend. To be honest even with carers unless your needs are high you get four calls a day with little choice over times. It's hard.

Finances, well, they struggle claiming anything possible including job seekers allowance. This will include pressure to work. Keep reapplying for PIP, but please get help with the form from somone with experience.

It's rough.

For those who have no one to talk to, consider the internet, even forums for people local to you or even support groups/forums for your condition or general ill health. Believe me, you are far from alone in your position.

You just try to make it through the day.
You lower your standards until they are on the floor & if you can't make those, you drop them further.

The help from all these agencies people think will support you is rare as rocking horse poo & even finding someone you can pay to help you can be hard depending on where you live & what help you want.
Even if you pay, you have to watch out because while most carers are lovely, some are not.

I have my mum & ds, but my mum is 85, so won't be around forever & ds is married & doesn't live with me. I've been living with my mum temporarily but am hoping to go back home soon, I'm really scared about how I will manage on my own, I don't want carers.

I'm sorry you find yourself in such a position, it's tough I know.

I don't think most people want carers, I didn't. However need's must. If you can do anything to improve your strength, independence & general health, do it, asap. Even little changes add up.

If you can't then it might be worth thinking about what support you need & what you can go without if you really can't face getting help in. Remember, life is long for most people.

Regarding carers, it's not easy, some shouldn't be doing the job but I've met some lovely people. Yes, it's awkward at times, & no one can do things just how you like certain things like cooking, cleaning, even personal care. You adjust & pick those battles that matter most.

But it's living & that's important. Like a lot of life changes it's a challenge, but it doesn't mean life is over.

Disabled single mum. I get on with it, because I have to.
I dreadto think what would happen if I stopped.

It’s the poverty affecting the present and future that scares me the most. I literally don’t know how it will work out. The complete and progressive narrowing of life to struggle ,then basic survival and being in bed. You can’t be ill and rest with SEN kids around so you’re unable to recover. The constant paperwork to get any financial help for you or kids is exhausting so it’s designed to keep you outside the system. There isn’t anything else to help.