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?

Why?

Citizens Advice have benefits calculators that will identify which benefits you may qualify for. For example, as your income is fairly low, you may qualify for Universal Credit. That could then open the door for other forms of support.

I have 2 chronic illness (1 the same as yours) plus other things, I manage to work 20 hours a week sometimes more and bring in about 50k a year.
Just before my illnesses took my mobility I retrained ( 15 years ago) and I was also very lucky that a company I used to work for went fully remote so I reapplied and got the job, my line manager is understanding (ish) and I manage 85% of the time.
Not saying I'm not in pain 24/7 or knackered (chronic fatigue) but I'm now tired for a reason.
What about retraining OP?

@Ezzee

Wow! 20 hours a week and 50k a year?

What on earth do you do?

Haven't read full thread, but have you explored 'Access to work' scheme.

I'm in a similar (but I think less severe) position so just sharing my story in case it helps at all. I developed inflammatory arthritis during my 2nd pregnancy and for a while struggled to walk until meds kicked in. I presume the injection is methotrexate? I found same, really struggled with infections and being wiped out for a day or 2 after. So I moved to sulfasalazine which is so much better in terms of infections and not wiping me out. Have you explored other options around medication?

I also claimed PIP and used to buy a 2nd hand automatic car with cruise control which really helps in bad days as my feet and knees are the most affected.

My manager got me Dragon talk to type, supportive seating, specialist keyboard etc.

That there are a lot of ideas for working at home for people in the same situation as OP

I am really lucky. I have an unpredictable condition and I couldn't work out of the home regularly or in a physical job, but my work support me to take time off when I need to and am able to work flexibly

I have round my "safe haven" in the public sector and feel very supported.

But I could almost certainly earn 2x-10x as much if i wasn't ill and could work in the private sector. (I am lucky to have sought after skills and training)

Loads of disabled people do work! Loads.
But there's a huge element of luck in terms of finding a truly supportive employer

I can’t think of many jobs which can survive such sporadic attendance and high levels of sickness absence. I work for a very large employer but on a local level departments would struggle day to day.

Of course, the cost implications are less impactful but we take people on because we need them to perform a job. And managing high levels of absence as a manager is incredibly time consuming.

I totally get that you want to work, I would too! But the arrangements you seem to need go beyond what I would consider reasonable adjustments for most roles.

Maybe some kind of 0 hour contracts could work? Where the hours are available at short notice so you could accept or decline them based on how you’re feeling.

I feel for you. It sounds rough.

Edited to add - I do think it’s easier to get more flexibility if you’re in a role when you become disabled.

PIP is not just £30a week. I have RA with secondary sjogrens and totally feel your pain. I’m on biologics and pain killers and also get every single bug going. I get £770 a month. It’s definitely worth you reapplying and if you join Benefits and Work they have guides will talk you through how to fill the form in thoroughly using the correct formatting and explanations and what evidence to submit. I filled in the form with their guide, had a 15 minute phone nurse appointment 5 months later and was given a 5 year award.

@CantMakerHerThink sorry for the silly question but what is Benefits and Work and how do you join it?

It's sad but I agree that your work needs aren't comparible with most employers' needs and it would mean an extra burden on other staff covering for you which often causes resentment. Working from home with very flexible hours could be a possibility.

https://www.benefitsandwork.co.uk/

It’s an online website and I think it used to be a forum. They provide all manner of guides and information to help people navigate the process of finding out what you are eligible to apply for and it explains how you navigate the forms and the criteria that they your answers are marked against. If you use the incorrect wording or don’t provide enough examples then it counts against you and everything you say needs to be backed up by evidence. That’s why the vast majority of people don’t get an award on the first application. They don’t know the “right” way to do things. The goes are put together by professionals that work/worked in the system and solicitors etc.

https://www.benefitsandwork.co.uk/