To wish there was more support for those with chronic illness who want to work

[Riiiiiiiight]

I left my job in 2001 to be a SAHM, fully intending to go back when DS was older. However in 2008 I was diagnosed with rheumatoid arthritis. By the time I was diagnosed it had pretty much destroyed the joints in my feet so standing and walking for any length of time was (and still is) agony.

Over the years it's progressed with regular flares, pain/damage in many of my joints including my hands and all the other symptoms of RA - crippling fatigue, issues with my eyes etc. I inject medication weekly, the side effects of which leave me laid out for at least the next two days when I can do pretty much nothing. The meds also compromise my immunity so I get every bug going on top of my RA.

Needless to say going back to work went out the window. I did have a part time job in a local shop for a few months about 15 years ago but they had to let me go because I was off sick so much.

I'm now in my mid 50s, haven't done a 'proper' job for a quarter of a century, no references/recent experience and anyway who will hire someone who is unable to work for at least two days a week and needs time off sick several times a month, and can't do basic stuff like stand/walk/type for long?

DH has supported us but it upsets me so much that I can't contribute and see no way of ever being able to. His wage isn't brilliant (£29k) but we get by, just. That said we've never been on holiday together and have no extras or luxuries and that's my fault. Not working is also very isolating. I have no friends and don't talk to anyone. I envy DH and his job that he loves and at the same time I feel like such a burden.

I wish there was support available for people like me who are not so disabled they can claim benefits but would like to do a few hours. I'm under no illusion that I could ever work full time or even 20 hours a week again, but I still have something to offer if given the chance. But any job would have to fit around my meds/disabilities/hospital appointments etc. I completely understand why employers wouldn't touch me (I've applied for literally hundreds of jobs but gave up last year, I never even got an interview. Sometimes I didn't even get past the application having no references/recent experience).

AIBU to think that there must be tens of thousands of people like me who have been just written off, and that if people want support to find work it should be available? Even just a few hours a week from home?

I haven’t worked for years. I would love to contribute financially to our family. I don’t know what that support would look like. Or what work I could manage.

Surely if you can't stand or walk far you would at least quaify for the mobility component of PIP?

So effectively you are looking for a sitting down job that's about 10 hours a week but very flexible, so you can work your hours when you are able to? I think these are probably like gold dust unfortunately.

Around here the jobs which might fit the bill are project based, often for local community trusts, and short term. You'd be self employed, and need to develop a fixed project such as a new cycle path - you liaise with landowners, secure funding, contractors etc. Obviously there are meetings involved at fixed times but other than that you usually work as and when you want, provided you deliver the project in the timeframe.
That's the only type of job I can think of I'm afraid.

If paid work is initially a non starter for you, what about volunteering in a role where it doesn't matter too much if you call in sick sometimes? Something like a small charity trustee? I appreciate it doesn't solve the money issue, but it does solve the lack of purpose/loneliness, and there's a chance you may develop useful skills to find a way into paid work.

I hear you.

I was unable to work for six years with ME/CFS.I have managed to get a job with a very supportive employer, even then I've had periods of time off sick and and I find it bloody hard going most of the time but I understand that supportive employers are few and far between. I've cetainly been discriminated against in previous jobs too.

I wish there was a way to support others into employment with chronic illnesses but I don't know what the answer is.

Have you thought of volunteering for a charity or local community group? There are all sorts of roles that could work for you, and at least you’d get the social benefits if not financial ones.

The OP may be in receipt of PIP, but that is not what her thread is about. It is about the lack of support for people with a range of disabilities, not having enough support finding a job, which they will be able to commit too, with unpredictable health issues. There are few employers who would want to take on a person, who may not be able to complete a full week, or be unable to work on set days, due to their health, having to have lots of hospital/ Doctor appointment, etc.

I agree with you. I have contacted every single employment/DWP minister since I had to give up my career due to a sudden physical disability from an accident.
I am left leaning, the only one who contacted me oddly enough was Esther McVey. We have a mutual friend, and to be fair to her she listened to concerns and suggestions.
There is something called the Permitted Work Scheme but it’s not fit for purpose.
I was able to work from home - literally from my bed - writing. All sorts of stuff, and then website copy.
For the last few years I was doing it people stopped paying me. And the smaller clients who always paid me now use AI. Why pay someone a small fee when you can get it for free?
Those last few years I realised that people saw the disability as a vulnerability that could be exploited. It is not like I can go around collecting debts. My other half has been really, really shocked eg seeing a website online where I’ve done all the work and not been paid for.
It happens a lot to able bodied people I know, not being paid.
The last one was before Christmas I was supposed to get paid by the 20th and got blocked.
The only way any system can work is by consulting the people it is designed to support. It cannot serve everyone but it might help a fair few.

The problem is that you are not well enough to work and your illness is one that is near impossible for most businesses to work around. I have a small business and even though, in theory, I could create a part- time wfh role for book keeping and admin with flexibility, I still wouldn’t employ someone like you (sorry) because even that role would have deadlines that would not be flexible if you had a flare/medical appointment. For example, I could say this work all needs to be done at any time over the next two weeks but must be completely finished and submitted by the 31st otherwise we will be fined/in breach of our professional obligations.

I've name changed for this.
You have my complete sympathy.
The job market is tough and even tougher with circumstances like you've described.
I understand why businesses don't want to hire disabled people (and in the main they don't) but it creates situations like yours.
I completely understand the two issues as well: financial and lonliness.
I'm not going to suggest volunteering as I think that you should be given the opportunity for paid work, irrespective of your disability. It should not be an alternative to paid work for people with disabilities.
Please don't let your disability define you. You are stronger than people will ever realise.

You have an incredibly debilitating illness

I really hope you’re getting PIP/support with rent/DLA, all the benefits you are entitled to.

Yes I think the job center has a role to support you to do a job a couple of days a week - literally the two best days physically for you. I wish our job centres acted like recruitment agencies in some way, they used to send people to jobs when I was young and get them interviewed, talk to the person recruiting on what they were looking for.

There is some support through charities. Your clinical care team for RA should be able to signpost you. Unfortunately I don't really know what other support you imagine there could be. Physical condition aside, you have no work experience essentially from this century. How could you possibly compete at interview with other candidates who have recent work experience, possibly degrees etc?

You say you have something to offer. What would this be? Could you turn this into something to offer on a voluntary basis, or is there potential for self-employment?

If your weekly injection is affecting you so badly, is there a different treatment option?

It's a tough call. Even my own very flexible employer would struggle with your situation because you're really unable to commit to delivering or turning up. (That's not meant harshly, it's simply a statement of fact.)

Investigate voluntary work - see if there is a role that can be performed either on a drop-in basis or work you can do from home that has flexible deadlines. You'd be contributing to a struggling and vitally important sector.

Whatever you do, you need to get yourself out into the world. Find an art class or a club or a social group and build a network of people who might turn into friends. I feel that would make your life feel a lot more fulfilling.

I applied shortly after I was diagnosed and was told I didn't qualify. I think because at the time I wasn't on this medication which is debilitating in itself, and I wasn't as 'ill' as I am now. Things have got worse since then, but the process was so humiliating and awful I'm not sure I could go through it again.

It's not just the money anyway (and PIP would only be about £30 a week). It's the feeling useful and not as if I was on the scrapheap.

Exactly this. I'm not sure there's work that exists that would be suitable for people in our position. It's not just about accommodations/accessibility. When your illness takes chunks out of your week and it's unpredictable, there's not much you can do.

In a perfect world, I'd love something that was, say, 15 hours a week, fully flexible, from home. I'm asking for something that doesn't exist I know.

I'm sorry you're going through this too, it's shit isn't it 💐

I'm sorry to hear this. I only mentioned PIP ( as I see the thread police chastised me for mentioning it ! ) as you mentioned feeling bad that you couldn't contribute to household finances. I know PIP is for the additional costs of a disability but many just pool it into houshold costs. It may be worth applying for help especially if things have got worse. It would be more if you qualified for the daily living part too. I do appreciate that many find it very stressful applying though. Good luck with working something out

Yep, that's the exact job! And yes, total pie in the sky. Short term would be fine, because I could take whatever came up as and when.

I've applied for countless volunteer roles but they all require references which I don't have. My background is charity/non profit organisations so I'd love to volunteer but without references it's impossible, it seems.

Would they not accept character references? It seems like such a shame as it would at least get you out and around others which in itself will do amazing for your mental health and self-esteem.

But yes, I fully agree with you that more support should be given, but I doubt it ever will.

@Riiiiiiiight Could you take some courses to update your skills in the nonprofit sector, for example, digital proficiency, grant writing, etc.? I work in the non-profit sector and completely agree with @eiteanpiobardubh that you could be a great fit as most projects that I work on don't require availability during certain hours, I just need to meet longer-term deadlines, i.e. if you're unwell on Monday and Tuesday, you can catch up later in the week.

If you can demonstrate some up-to-date skills in needed areas, I think you'll have some success with volunteering and that'll get you the references that you need for paid employment.

I’ve name changed to post, I understand and can relate to everything you say, I have been out of work since 2006 when my health started affecting my ability to be a be a consistent and reliable daycare manager.

I have RA and severe bronchiectasis as well a few other conditions, but between those two conditions, I feel like I’ve had so many things robbed from me. The ability to be spontaneous. It fucking sucks OP and I’m sorry you’re having to deal with it too.

I can cope with a lot of pain, that side of things although extremely fucking hard, I find it sort less stressful to cope with, in struggling to find the right words, because when people see the swollen red joints, I’m believed. I get understanding. Its the invisible relentless stuff like the extreme fatigue or extreme brain fog, the severe pain that isn’t visible, the stuff that impacts me every single day and has done a right number on my MH, , there’s much less understanding for that side of things, I’ve lost friends because I can’t keep up with everyone, or can’t do the activities they want. It’s shit.

I struggle with feeling like a burden to my husband and family, and society and it’s hard to challenge those thoughts when there’s many many threads and articles etc full of people being vocal about pip and what a burden disabled people are.

Employees don’t want someone with unpredictable health and I can understand that, but it’s doesn’t do the self esteem much good does it.

MTX? That's hard (have they increased the folate on non MTX days? That can reduce some of the symptoms).

You could have a good case to move onto Biologics, though. Could you make an appointment and ask them outright, as the MTX isn't doing enough to reduce pain and disease activity whilst causing intolerable levels of side effects?

When I wasn't working, I studied for some qualifications, did a tiny bit of volunteering in different things and that gave me something to put on applications, along with current references.

I agree, it would be better for society all round if more chronically ill or disabled people were supported in work.

However, I work in hr for a very supportive employer (local gov) and spend my days trying to support managers in dealing with the impact of such high levels of absence from employees with chronic conditions. Impact on the colleagues and the service users. We end up with colleagues and managers then off with stress due to the workload increases, they can't afford to just get agency in.

I don't know what the solution is really. There are very few jobs and organisations that support such levels of flexibility in a job

Could you do proof reading from home , or is this not a thing anymore?

I lost all my proof clients. They just put it all through AI saves them a fortune.
Some bigger clients may still use it but they tend not to use disabled people who can only do a few flexible hours.
The last one I did I never got paid at all. I got bumped.

Why don’t you start your own business? Something small, then when you are not well you can take a break and then when you are well you can work at it?

I hear you. I have PsA and am the wrong side of 55 and was self employed to accommodate caring for my Mum the diagnosed 3 years ago after a fight as NHS wouldn’t refer me. As a result the PsA has a grip and been destroying joints and isn’t really responding to anything though I hope my second biologic may help.

Over the last few months I have been supporting a friend who is a hoarder work through things and get on top of her house and I would love to do that to help others but feel it could potentially be problematic being immunosuppressed.

I have sorted references though. Been helping someone locally who is setting up a community project and I think she will do me one. Also helped someone online who has a business and she said she will do one.

I’m absolutely pissed off with the situation now though and going to be as creative as possible with my thinking and see what I can sort.