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 agree with you OP. I have several lifelong conditions which drain my energy, cause pain and distress and generally make life very difficult.
I do work, but part time as I can't manage a full week. I've tried repeatedly to get PIP but just don't "tick the right boxes", I can walk and work so therefore I'm OK apparently.
Those of us with conditions still have bills to pay like anyone else but we're just supposed to somehow make the same money as a healthy person would while every day is a struggle. I only get by right now because my wonderful family and friends help me (which makes me worry that I'm a burden to others.)
This isn't supposed to be a "poor me" pity party, I'm willing to work and earn money, but physical limitation is a reality for a lot of people.

There is no support for those of us too sick to work full time but "not sick enough" to tick the boxes for help. None at all.

RA is awful, sorry you've dealt with that.

I completely agree. We seem to do nothing to connect people who want go work with jobs.

I read that in Germany there's a database of jobs for people with disabilities, including wfh jobs and so on and companies get tax breaks for connecting people with work.

It's a pretty simple program that would improve quality of life for so many.

What sort of support would you be looking for?

I have a similar health issue to you and have worked in wfh roles but ploughed through the pain when I was young so that by now, I'm senior enough that most of the role is thinking/ meeting based with less typing.

Some years were brutal and I had to give myself a real pep talk every morning. The biggest accommodation I got was a later start time to avoid rush hour in the tube, before wfh was a common thing. I shamelessly sat in the office with multiple hot water bottles to numb the pain.

The multiple hospital apts are a problem and make me feel like I'm letting the team down but I try to make sure I pull my weight in other ways. I also catch every bug going and get every vaccine available to limit the impact + try to work as much as I can from a lying position when I'm not feeling well to avoid taking too much time off.

I'm fortunate I had my children late so my career was established by then. It's so much harder to get this flexibility with entry level roles.

I have had periods of time when I haven’t worked. Every time the route back to work for me started with volunteering. It gave me confidence, got me into work routine and sticking to commitments and sometimes just proved my worth to someone who then took me on for pays work.

i don’t think volunteering should be underestimated. The longer you’ve been out of work the more important this is.

Have you checked for any disability benefits you are probably entitled to ?
You should be getting PIP if you need help with personal care . On the forms you put down the info for your worst days ie. The days following your injections where you need help with personal care and need food preparation done for you . As you can only mobilise a few yards you should be entitled to the mobility element as well . On top of that that you may well be entitled to to employment support allowance.
In you position I would make an appointment at the Citizens Advice Bureau and find out what you could be claiming . Good luck .

I think you should re apply. My relative with RA has the same symptoms and receives higher rate PIP.

Its incredibly challenging.

i have a disabled child and chronic health conditions, I am fortunate I had a career in a role which meant I could start my own business. It’s hard but rewarding. I’m so grateful but cant imagine how hard it is to try and retrain. The job market is so tough.

Is there anything you are interested in or good at which you could make some money doing?

I knew someone who sold necklaces on Etsy that she imported the basic components from china or similar. It basically involved mostly packing stuff up and posting it and some stuff online. I must confess I don’t know the details but she made ok side money doing it.

could you get a 3D printer and sell fidget toys that are all the rage now?

I have a chronic illness and work self employed now, so I can control my diary so I can fit sleep in. I probably wouldn’t qualify for PIP because some days I can function ok and I can do my own personal care etc
I can’t live alone though, for safety, and do need people to prepare meals for me.
Sometimes I just wish there was like a small top up for people like me with a diagnosed chronic illness who try to work full time hours but sometimes just have to work 20- 25 if things are bad. So maybe if 2 weeks out of a month I had to do less hours, I could get a small top up for those weeks.
I could show proof of my illness, medications and the hours I do work and I wouldn’t expect it every week. But sometimes when things are really bad, it would be a relief to know there is a small safety net.

I looked into PIP and I honestly don’t know how people get it unless they are basically bed bound and unable to wash or feed themselves. I was told that you won’t receive enough points unless you can’t do your own personal care or feed yourself 😕

So many of us are struggling daily.
I really think they should be trying to encourage people into work and incentive’s like this would be helpful for that.

Just popping in to say that a charity I work with regularly recruits trustees and would definitely want to hear from an applicant regardless of your support needs. Search on LinkedIn for charity trustee roles.

I know it’s not paid but would be a foot in the door.

Could you try monetise social media? Your content could be your chronic illness/ impact on work opportunities etc.. could be an audience for it you never know!

This is actually interesting in the sense it shows how desperate society is for the op to earn money.

You can do something called permitted
work (up to 16 hours per week earning under approx £200 after tax) while on esa and it may be worth looking into if that could work for
you.

Your condition won't help, but I think part of the reason you're unable to find suitable work is having been out of the workplace for so long, causing a lack of skills.
Is a zero hours WFH type of job possible for you do you think? That way you have more say over when you can work.

I have RA so I know how debilitating it can be. I'm fortunate in that I can work full time. But because have been in the job for a very long time, predating diagnosis, my employer is understanding and offers flexibility when needed. It helps that my role is not easy to replace. I highly doubt they would take on someone with a chronic condition that limited their capacity to work.

I think you need to get onto your rheumatologist to achieve better management of your condition. You will have to keep at them as the NHS is so stretched. When you are able to, try to gain some useful skills for roles you could realistically achieve working in.
It's very hard, but please not give up hope that you'll be well enough to work again.

But op doesn't qualify for ESA because she hasn't worked for years ? Esa is based on NI contibutions which she won't have.

I hear you, I stopped working when my endometriosis was taking over my life and became a sahm with the full support of Dh. I could do some volunteer work when the children were at school but they knew I couldn't always guarantee I would be able to come in to do the work. As time went on I had to reduce the number of hours I could do and then it just wasn't worth the recovery time I needed afterwards.

I have always felt like a burden and hated not being able to earn my own money and pay into the family pot. I worked from being 13 years old. I hated relying on another person for financial support. Luckily Dh is an absolute gem and understands when I am having bad days. He also attended every gynae appointment with me, looked after me after surgery and has never made me feel like a burden.

Previously Dh and I shared the nursery drop offs and pick ups and the inevitable sick days but then when I became a sahm it meant Dh could commit to building his career and fortunately got pay rises.

I completely understand where you are coming from about your work but is there any way your Dh could look into another job that pays more? The only reason I am saying this is to increase his pension pot and therefore the money to cover both of you in his retirement.

I would also look into PIP again and do some research on how to fill the forms in to be more successful.

Hopefully you will find something you can do work wise. I have resigned myself to not working again and as lovely as that sounds, it would be great if I had a choice in it. I would like to work, I miss people, office banter and gossip and feeling worthwhile.

Look out for sessional work posts in the voluntary sector
I employ 3 people on this basis and have just recruited 8 more - some people only do 3-4 hours a week others work 15-20 hours flexibly

Yup.
Plus we also need to be protected from airborne infections in the workplace.
There are some online courses you can do from home though if you would be interested in that. Contact the national careers service to see what's available in your area.
There's so e volunteering that can be done from home too. It could be calling an elderly person once a week for a chat or updating a local organisation's social media.
Do you have a local council for voluntary service? That might be a good place to start.
Also have a look at Even Break who do work coaching and advertise disability confident jobs. And the work from home hub for ideas too.
Good luck OP.

Avon reps and similar were a thing last century. Everything is online now.

How did you find this work? Was it through an organisation?