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?

Hi OP
I haven't had time to read the whole thread but as someone with RA it sounds to me with your post injection side effects that you might be on methotrexate. I was on it for years and suffered in exactly the way that you describe. It never occurred to me that although the MTX contained my RA that the side effects meant that it wasn't suitable for me and that I was entitled to ask for another medication until I found one that worked but didn't give me these debilitating effects. I would lose two to three days a week feeling exhausted, depressed. nauseous. It dominated my life. Long story short I developed Rheumatoid nodules in my lung and it was suggested that the MTX might be making them worse. At this point I was put on rituximab which worked well but messed my bloods up. Now I am on Baricitinib and it is brilliant. It is in tablet form and works quickly but also leaves your system quickly if you need to have a break from it. I would really urge you to talk to your rheumy team and say the side effects are such that it is no longer suitable and see what other medications they suggest. RA is bad enough you shouldn't have to suffer from the treatment as well.

If you just want to bring some money in have you considered Matched Betting? I’ve been doing it as a side hustle for around 3 years now and make an average of £500 a month tax free. You can “work” as much or as little as you want but be prepared to do a few hours at the weekend as that’s the most profitable time. Obvs it won’t give you the social side that working outside the home would but there’s a great online community.

I don’t have RA but am on methotrexate. It can be rough.

OP is struggling financially. How can she start a business?

Can you look for an employer who is 'disability confident' and get additional support from the Access to Work scheme (https://www.gov.uk/access-to-work).
Please don't write yourself off. The right employer would be lucky to have you!

If you let your Job Centre know you are disabled but interested in finding work, they should be able to put you in contact with a specialist disability advisor who will help you find something that can work for both you and the employer.

How about something self emplyed like being an Avon rep?

This involves being mobile, and visiting customers, or is it all online these days?

Reading this thread and various suggestions, surely more people who are not as disabled as OPcould go back to work of some kind?

If it is all online then the customers will be ordering online. No need for agents.

Unless customers pick what they want, and the agent does the ordering and delivery, in which case it’s unsuitable for OP.

I hear you OP.
I have not been in paid work for over 15 years.
I have tried to look for work and even volunteering. I can't get a reference that is new enough. I was sacked from my last job, and everyone else is dead.
I have never had a job involving computers (well, cleaning them). I do not know what an 'admin' job even means.
I end up in hospital everyso often. No one would want to employ me.

Unfortunately I think there would be much more support for this kind of situation if you were in work, especially in a qualified job, when it developed. Then I think many employers would find ways to be supportive, also because there is a move among some employers to increase the numbers of disabled people.

I’m sure there are also many that would not be supportive. It’s a shame. Wishing you the best.

It is not ‘your fault’ that you suffer so much you can’t work. You also brought up your child. Please be kinder to yourself.

People keep talking about disability but the OP said she has a chronic illness. Although illness can cause disability, many disabled people are not ill, eg hearing impaired, loss of limb in motorbike accident.

Having a chronic illness is a whole different ballgame and very difficult to put in reasonable adjustments.
The bottom line is that when the person is well they can probably manage the job fine, but then they have regular periods when they are simply not well enough to work.
This is a very difficult scenario and the key to this lies in healthcare and getting the medical condition as well controlled as possible

We need more flexible working. When we started getting WFH people seemed to think that was it.
Im not disabled but a carer, I’d like to work part time but flexibility, but everything locally is fixed hours which doesn’t work.

OP I’m sorry you feel like this and I can’t relate, but have you ever considered doing a little side hustle? Plenty of people out there making things and either advertising on local facebook pages or Etsy. If you’re not creative, you could make sweet cones or party favours? Buy a printer and some stickers and personalise them. Have a look around and work on your own terms / time.

This, and want to add that it’s not ‘your fault’ that you and DH can’t afford holidays or extras. You didn’t choose or create this very debilitating illness so none of that is your fault. Plus, I’d bet that you look after the home, and you brought up DS, so you made a huge contribution to the family.

It’s a great pity that the social climate is such that people feel they only have worth if they work. Agree totally that it would be good if the government did more to help sick and disabled people who want to work, but it would be expensive and would have to be tailored to very individual and diverse needs, which would be complicated, so they don’t.

Agree with a PP that it would be good to build up your social connections, whether that’s through, for example, a support group for RA, a church, or very informal volunteering that doesn’t demand a CV - one-off local events like a harvest festival or community fair, for instance, if there’s anything like that going on in your area. Possibly having more social connections would lead to occasional informal work opportunities, and it might at least lift your mood a bit.

Best of luck to you 💐

@Riiiiiiiight I have RA too and can really
relate. I’m being made redundant because of
my disability (I know it’s discrimination but I’ve been paid off basically) and I would love to work but I can work 3 days a week at best and ideally spread the hours over 4 with working from home most of the week. I can’t find anything suitable and I feel very fed up.

I’ve just started my third biologic and I get ill a lot, have other conditions and have a fair number of appointments. I completely understand I’m not easy to employ but I can add value and I want to work! Plus I’m 39 so retirement is a long way off.

Oh OP, I can empathise with this so much. I have MS, and I’m not eligible for higher-rate PIP but working full time is bloody impossible.
It does feel like we’re just forgotten about. I’ve had to move back in with my parents and the future terrifies me.

Remote/flexible jobs are like gold dust, and while I’m trying to hang in at work, I just don’t have the energy for applications too. It’s so difficult- sending you lots of love.

I believe the political spirit of the moment is that everyone is on benefits and playing the system and that people need to get back to work.
Unfortunately, there are people like you (and me) who are just not well enough to hold down jobs.
There is no flexibility in the career in which I trained- and so I am looking at retraining, but again, my health is unreliable, I have flare-ups and can't leave the house.
If an employer had a choice between me and a 'well' person then of course they will pick them because it's less hassle.
Im sure I would be protected by disability laws if I was employed but I have never been offered a job after disclosing my rare disease.

I worry that we are going backwards in terms of employee rights and I am concerned that the up and coming right of centre party will scrap all employee rights if they were to get into power. This current government wanted to cut the disability benefits of some of the most poorly people in the country and extolled the virtues of their 'right to try' scheme which I haven't heard about since.

It's just hard. I am in the same boat as you and I feel so lost. I'm nearly two years out of work.

Please apply for PIP again. I tried first time and was turned down. I have fibromyalgia which exhausts me and wide spread pain. I also have hip and back issues so need a walking stick.

I applied again. Get some help from CAB. They are very good at writing the form in a way the assessors want to see things written(stupid, I know!).

It feels rubbish having to apply but it’s designed to help. I’m a single parent and it’s allowed me breathing room.

I do wish the government would look into how things like PiP are judged. I’d like to be able to do a few hours a week but I know when I applied first time, the fact I worked- because, you know, I didn’t want to starve- was seen as a “choice “ as so I wasn’t as ill. It puts me off trying as I may have a good few weeks then feel awful so need stability of income. You’d have far more people in work if they were flexible and realistic about disability in that it’s not the same everyday.

Please apply for PIP again. I tried first time and was turned down. I have fibromyalgia which exhausts me and wide spread pain. I also have hip and back issues so need a walking stick.

I applied again. Get some help from CAB. They are very good at writing the form in a way the assessors want to see things written(stupid, I know!).

It feels rubbish having to apply but it’s designed to help. I’m a single parent and it’s allowed me breathing room.

I do wish the government would look into how things like PiP are judged. I’d like to be able to do a few hours a week but I know when I applied first time, the fact I worked- because, you know, I didn’t want to starve- was seen as a “choice “ as so I wasn’t as ill. It puts me off trying as I may have a good few weeks then feel awful so need stability of income. You’d have far more people in work if they were flexible and realistic about disability in that it’s not the same everyday.

There is loads of roles that you need do sitting down but I’m sure your illness impacts other areas not just standing. I remember when my mother had flare ups, she would be in agony, the pain ruined her life long before she died.
Most employers won’t take the risk of employing someone who has sick days and a regular flare up unless you’re a qualified accountant or have a specific skill that you do with your mind while sitting comfortably.

I mainly worked in call centre roles, to work around the children, there was a lot of women in their 50’s working PT with mobility and joint issues, they’d take a lot of painkillers to get through the shift

PIP can be more than £30 per week, there are 2 parts, care and mobility, and different weekly amount for different levels. From what you have described I think.you should apply. Look on gov.uk