AIBU to worry about how I'll manage financially when I'm older?

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And to be absolutely terrified?

I'm 56. Haven't worked since DS was born in 2000. Originally the plan was to go back part time when he went to school then more hours as he got older. Unfortunately I was diagnosed with rheumatoid arthritis 25 years ago which put the kybosh on that plan. DH has been the breadwinner and is on an okay wage (about £30k) but not enough to pay into a workplace pension or anything. We don't have any savings to speak of (about £2k for emergencies).

I have tried to find very flexible, part time work for years but it's absolutely impossible with no references etc and knowing I'll need time off sick several times a month when my symptoms are at their worst and/or the side effects from the drugs I take are particularly bad. I did have a job briefly (a few weeks) in a shop in 2011 but they let me go when I couldn't stand behind the counter and was off sick for a week, which I completely understand even though it was heartbreaking. I have applied for PIP but was turned down. I did not reapply because it was so dehumanising and stressful and we could manage on DH's salary just about.

What will happen when I/we reach pension age? DH is five years younger than me if that makes any difference. I'm so terrified of getting older that sometimes I think it would be better if I didn't. No money and health that is already declining makes for just such a bleak prospect. I think of the retirement my parents had - little UK breaks, days out, the occasional treat for DS, not well off by any means but comfortable and happy - and think what the future holds for me in comparison and it's so frightening. I've never been on holiday in my life and we have never been able to afford driving lessons let alone a car!

AIBU to be terrified of the future?

I can’t believe you are not entitled to more support. You need to check this, with PIP, I understand you need to paint a picture of your worst day, so don’t play it down and try again. With regards to finding work, i would start volunteering which will help with references. Reading between the lines I think you would benefit from a wider community but I appreciate that’s not what you asked.

She isn’t eligible for that. She’s in her 50s.

Op UC is not decided on whether a person works full time or not it’s decided on the income they bring in. It’s means tested and if your husband earns 30k then you’re going to be eligible but will need to apply for it as a couple. With your health issues and being unable to work you may also be eligible for LCWRA. Have a go at filling in one of the UC calculators. Also please reapply for PIP but with proper help to fill it out. Yes it is dehumanising but in a few months time you could be much better off. Don’t be too proud, it could help you a lot.
EDITED TO ADD
There are lots of really great FB groups that are a huge help with UC and PIP questions and experience, join them. (Links below)

https://www.facebook.com/share/g/18qCFeMa25/?mibextid=wwXIfr

https://www.facebook.com/share/g/1DUv6fFCRk/?mibextid=wwXIfr

Can you do some self employed work on your good days?

Join Fightback4justice on facebook They also have a website . They offer so much Welfare advice support . Also they assist with appeals for PIP and offer assistance with filling in forms . My niece is on a similar situation with debilitating RA and 2 children , one with multiple disabilities. It is so hard for her . I hope you get the support you need xx
www.fightback4justice.co.uk/?fbclid=IwdGRjcATIpQtjbGNrBMik_mV4dG4DYWVtAjExAHNydGMGYXBwX2lkDDM1MDY4NTUzMTcyOAABHvk34yM9nY6vxKIZ4SzsvTYOlwlWwlQWXX4OI91lTDvm6H_RZi8YEOGc-QZX_aem_AxcNIWo2egHpi5sc3NBOMA

I think you need to reapply for benefits and continue to look for work that suits you, flexible, home based perhaps? Then DH opts back into pension asap, benefitting from tax relief and employer contributions.
My main point though is that you are used to living on a low income so if you can get 2 x full new SP, you won't be too uncomfortable. If you can top up with savings from the next 10 years, you should be ok.

I would look at paying voluntary NI contributions - it's a much lower rate than people in work pay and it might help you get a full state pension.

We've gone into shared ownership apartments. One side is rented. They are warm and the utility bills are low. If they are/become available in the future, I'd seriously think about moving. The HA will help with the transfer. So in terms if housing costs, that would be a help.
I'd reapply for PIP, as said. Take away rent and other things tbh you aren't necessarily going to be on much less than you are now. Your DS is going to be a full adult. Then there's attendance allowance.

I'm assuming you are probably on methotrexate? Changing to injections instead of tablets may help with the side effects. You really need to let your rheumatologist know how much you are suffering. There are so many new treatments nowadays that are really life changing. I work full time with RA & always have. It is definitely possible with the correct treatment & support. You should ask about biologics - these have been incredible for me. Good luck!

You definitely need to reapply for PIP. If you're getting it before pension age, it continues afterwards. You're entitled to it.
However, and this will sound off, and no doubt I'll get a roasting for it, BUT, the PIP examiners will find any way they can to not allow it. It's wrong, but there you go. RA is awful, that's for sure. You MUST tell them what you're like on your worst days. It's no good telling them that you can do this and that on a good day, because they'll immediately take that as you can do it, full stop. It's not lying. You simply cannot guarantee to do the stuff they said you could, safely, repeatedly and reliably. Please get advice - there are PIP groups on Facebook.
I know it's demeaning, almost as if you're begging, but remember, you are entitled to that help. Also, if you need extra things to help around the house such as something to help open jars, etc, or even, if things get really bad, walking aids. None of these things come cheap, and PIP can be a godsend. I wish you strength, and good luck.

Just so you know, PIP rules are that if you can’t do something reliably, safely or it takes you twice as long to do something,( eg, cooking, bathing etc) for more than 50% of the week, for pip purposes you are not able to do it and should get full points. Please read up on the pip rules. You may be surprised and find you do in fact qualify xxx

I would be scared too - you have been on the breadline for decades. I don't know how you have survived so long on one income that is barely above minimum wage, with nothing left for savings or holidays or anything that might help your son, and let that continue until the age of 56. I'm sorry OP but what a mess. You both should have tried to do better for the sake of your son.

Even the median at ops husbands age is £42k. Thats £12k more a year, even after tax & NI its £700 quid more a month, enough for £200 each in a pension (plus theyd get tax relief so its worth more) and £300 extra for a more comfortable life. Its really important that people understand if their pay is low & that they might do better to look for different work to improve it.

Why come on here to put the boot in?

‘Tried to do better’? Did you miss the whole paragraph or so where OP talked about her rheumatoid arthritis? Do you know anything about the condition or how incapacitating it can be?

Your post contains literally nothing constructive or helpful to OP. Why did you even bother posting?

Telling them what you are like on your worst days is exactly what you must do.

Be careful of advising this.
Husband could pay out to get a very modest pension and it could just be enough to make him lose a host of other benefits. So taking your advice could cost them dear

Have a look at the benefits and work website for advice about pip. You should definitely try applying again. I know it’s a humiliating process, but it will make a big difference financially so it’s worth doing. I have a different type of inflammatory arthritis to RA so I understand how tough it is.

You have to send loads of evidence and explanations of how unwell you are on your worst days. During my face to face assessment I told the assessor I was in pain and pointed to where it hurt. He was also treated to a view of my wonky toes when I said I couldn’t get my shoes on that day and was wearing slippers instead of shoes.

No, a PIP award doesn't count towards NI contributions. Only an out-of-work benefit will do that.

I live in Stoke-on-Trent and the majority of people here earn a full time wage of 30k or less and don't qualify for any top ups from the state.

OP, get some advice & support with filling out the application from Citizens Advice (or similar service).

Then you won't have to feel worried about being "fraudulent" and will be wording it the right way for best chance of getting it.

You can't work, you deserve the help.

It's fraud to only mention bad days

When you do a Pop application you are meant to answer the questions with your worst day possible in mind.

Haven't RTFT but just to say that this site suggests that claims for Rheumatoid Arthritis have a success rate of 72.19%. This is one of the higher rates so you'd be likely to get it.

Yes, this I the correct course of action. OP, you need a full benefit check and someone to help you with your PIP application (which you do need to make, even though it’s a bit dispiriting). I’m sure you’re not receiving everything you’re entitled to but you do need to be proactive about this. I also wonder if there’s some kind of online work you could be doing, perhaps selling on eBay, etc.