Since discovering this website I read daily about people’s conditions, experiences and coping mechanisms-it has given me the courage to write about my situation.
Since having COVID I am exhausted and in pain daily, I am struggling to work full time despite 3 days at home. I love to work but my manager is awful and adds to my stress. I am considering moving to part time now as I’m struggling to cope, although the money will be impacted. Two kids in school so demanding on all fronts. I am very stressed -awful IBS flare for a long time. I am waiting the outcome of PIP application made last September (didn’t know I could qualify for this after being diagnosed with RA 3 years ago).
I just wanted to gauge what has been other people experience with work/RA?
Many thanks,
Written by
SuriL
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Mine is not a positive story I’m afraid. When I was diagnosed I had just got my dream job but had to leave as could not cope with early mornings. Slowly I reduced my hours until I was only working 1 1/2 hours a day . I loved my job but I had to rest to work then rest after work no housework getting done. Declining social occasions because of repercussions which effected work . I wasn’t like you getting any support at work although I was very reliable and went in on my worst days . I finished work 2 weeks ago. I’m going to concentrate on me snd try to get to a better place as well as enjoy life a bit more. I will reevaluate in 6 months and if I’m much better will look at starting work again.
There are people who have manage work but you need to do what’s best for you
Thank you J1707 fir your response. It’s awful, esp the early mornings! I am sorry you have had to give up but it is more important you look after you. I too landed a good job which really suits me and the family but sadly since having Covid it has been awful trying to cope and work wants me in full time.My employers are good but my manager is awful, so very frustrating. I will spk to my GP this week to hear what he says -although initially he said I should not have to lose income (he knows we are saving to buy a home) I feel too drained and mentally exhausted to fight.
I’m not a very good advert for working with RA either but there have been posts about this before so if you do a search and filter for NRAS then hopefully you can find some from people who have had similar experiences. NRAS do some good publications if you haven’t already looked at them. The work one should be useful and help you to get reasonable adjustments at work
Keep talking to us here for support and I’d also get some advice from citizens advice or the NRAS helpline if you need it. Let us know how you get on 🤗
Thank you Kitty J, I will read the suggested publications, lots to learn and understand.I very much appreciate your support (and all the other members too) it is very inspiring and informative.
I was in an awful state working and with the impact of covid I took the redundancy offered whilst I tried to get myself in a better place. I am not there still but I now have a bank hours job for the NHS and hoping to start next month. The impact of loss of earnings has been huge but I had to make the decision based on the fact I felt my standard of work decreased and I was not coping in any shape or form.So I will know when back in the work place if I can do 8hrs once a week and fingers x I can because the extra money would be nice I have to say.
They say 20-30% of people diagnosed with RA within 2-3years are unable to work.
Many thanks Deeb, I think you did the right thing, your health must come first. Goid that u were offered redundancy and could make changes to your life structure to improve your health and well being. I hope my workplace will allow a part time role for me, but i know my manager who relies on me to run the department will not be pleased. Coping with extra work demands is not doing my health any good- in fact I feel pretty certain it’s the reason my IBS is so bad! All the best in strengthening you and thank you 😊
Can’t help with work / RA but I went totally gluten free back in 2015 when I developed inflammatory arthritis, then ate French bread, croissants, pain au raisin all the way down through France on holiday and ended up so puffy I looked like an overweight alien.I’d already just gone into remission from Graves’ disease which was another autoimmune condition. I was never tested to see if I was coeliac which is the wrong way to go about it.
The big unexpected bonus for me turned out to be that it definitely helped with was my IBS. My thyroid antibodies also plummeted which was what I was hoping for.
So if you haven’t tried going totally GF it might be worth it. I did it for three months and after that time my thyroid antibodies and also my CRP decreased so steadily that I have never gone back to eating gluten.
I'm very lucky as my RA is well-controlled at the moment and at 61 and self-employed, I can set my hours myself. I was diagnosed about three years ago and was able to work less while I found the right medication regime and also take some time to get my head around the diagnosis. I still pace myself, avoiding long hours where possible and factoring in a rest day after a busy period but my stamina is definitely better than it was at the beginning.
How long have you been on this journey and was your RA stable before you had Covid? I've had IBS for many years but it's currently much better. That's probably due to many things including being having less stress, eating better and rushing around less. I also think that one of my DMARDS, Sulphasalzine, might be having a good effect on it.
Thank you Boxerlady -sounds like you have done the best thing for you. Working for yourself is amazing for the flexibility it offers. I am hoping if I go part time I can dedicate time to my health and we’ll being and slowly my health will improve.I was diagnosed 3 years ago but must have had it for at least 4/5 yrs. I hadn’t a clue if RA and struggled with many issues but just thought I was overworked and being a mum and a carer too didn’t help! My RA was controlled before COVID but since then its left me feeling totally exhausted and awful IBS! I think I need a complete overhaul now ! Many thanks for your feedback
Hello SuriL, Sorry to hear you’re having such a tough time.
I have a more positive work story. I’m in remission now and have a relatively ‘senior’ job. To help me manage I work 4 days a week (3 from the office with a chunky commute!) and also have a cleaner for 3 hours a week to take away the housework pressure. Unfortunately due to another autoimmune condition I was unable to have children but can appreciate how much they must add to your busyness.
I was thinking about your situation - your idea of changing to part time sounds like a good plan. Could you do this temporarily until your RA and IBS are better under control? Appreciate you’re saving for a house but maybe you need to prioritise your health for now?
Are your rheumatology team able to help too? Perhaps a change of meds might be needed?
Good luck and be brave, it sounds like something needs to change. Sending virtual moral support! X
Thank you Katie Mag, great you could do a part time role with a bit of home working thrown in, it makes all the difference not having to get up early -thaw out and rush to work. You are absolutely right -I really must prioritise my health now, it’s the only way to get better. Thank you for your suggestions to get Rheumethology involved-I must call them again (no response since they missed my phone appt 2 wld ago).
I was dx age 6 in 1971, so had RA at school (not allowed to do sport) and knew I needed a sitting down job when I left school at 16. I did secretarial work for 22 years and knew I probably wouldn't be able to keep working until normal retirement age, but was aiming for 50.
I had two children and continued working but then a rear shunt RTC caused my neck to become unstable, GP did not recognise neurological signs and I ended up having my neck decompressed and fused with titanium rods. That took a while to recover from and I knew then that lifting and carrying heavy files, walking up and down stairs etc. wouldn't be possible, so I reluctantly ended my working career in 2002, age 38 and 31 years after diagnosis.
I was diagnosed with RA 12 years ago and have worked part time all those years. But my children are grown up with families of their own.,About 4 years ago I had a massive flare and was off work for 5 months. I self referred to Occ Health as I was struggling with early starts (I am a receptionist in a university) and his recommendations were later hours and parking close by which the uni have stuck to. My team leader is very supportive but our manager less so; I don’t think she likes me being treated differently eg we are expected to cover receptions in various buildings across 2 campuses but I can’t work in some of them because of lack of available parking. I have just cut down to 3 days a week as I am heading towards retirement but don’t want to stop working all together just yet. I realise I am fortunate that my RA is pretty well controlled by biologics although that comes at a cost of low white cell count/neutrophils!
Thank you for your response - I hope you are keeping well . It’s do important to keep going -I thought this job will see me into retirement too, so wish to keep going even if part time. Many thanks 😊
Morning. This is a random aside, but please ensure you let your Pension Scheme know that you have had to reduce your hours due to a health condition. They ‘should’ ring fence the full-time wage you used to earn. I know all pension schemes are continually changing, so you need to be on top of all of this. Pensions are a bit of a minefield so you will probably need to do some digging; and all schemes are different. Good Luck.
Hi. I've been diagnosed with RA 20 years and still work full time driving through rush hour 5 days a week. I too am exhausted and in pain but I can't afford not to work. I've done the benefits calculator many times and because my husband works I'm entitled to nothing. If you can afford to reduce your hours do it. If you can't, working can be done. Sorry I can't be more positive.
Hi. Just picking up on your comment about applying for benefits. Have you checked the criteria for PIP (personal independence payment) . PIP is not earnings related at all …it’s based purely on your condition and the support you need to be able to function normally.
Thank you -I completely understand, as we too will not qualify for benefits so important I work. But I am really struggling now and had my interview fir pip so awaiting their response. Keep well
Hi, I struggled with working and had managers that were horrible as they did not understand. looking back if I knew then what I know now I would have fought my corner, even taken it further if necessary. I am also waiting on a pip application and going to fight that if I get turned down for a 2nd time. People/ medical team have no idea what it is like living with this disease unless they have it themselves. On a positive note there is a book that is worth getting, I wish I knew about it before. its called beat artharitis naturally by Emily Johnson. Hope you get things sorted with your job, and fingers crossed we get excepted for pip.
Thank u Bagpuss, you are so right -I put on a brave face and try to do everything expected of me in my job but sometimes I think they just do not wish to understand. I will look for that book, thank u🤗
When I first became unwell with RA I could not manage to work due to the overwhelming fatigue and went off sick. A year later I was medically retired and haven't worked since, that was 5 years ago. Fatigue remains one of my big issues today.
Hi, I was diagnosed 13 years ago. I had a mega busy job in business development and really struggled to cope, but I kept running in that hamster wheel. I used to feel like I was running to stand still.I lived on my own with a big mortgage so I couldn’t jump out of the hamster wheel.
Our department was new and I was the first person - it slowly grew to 5 people but the workload was horrendous.
I dropped to 4 days a week but my workload didn’t drop accordingly.
I struggled to go to work every day, working through flares etc - I hardly took any sick leave.
Three Christmases ago I stopped for the holidays, and just couldn’t get going again. I was soooooo run down. My GP signed me off (I was off for 3 months). She told me I had to change my life as I couldn’t keep going as I did.
My boss was useless - all he saw was me coping (my fault for trying so hard).
I didn’t think it was possible to reduce hours as I had my hefty mortgage. But …… I took early retirement (I was 55). My resignation shocked him - the first thing he said was would I work on a consultancy basis! So I did that for 2 years and with my pension (which was reduced as I took it early) managed to work 2 days a week - quite a lot from home.
When Covid arrived I decided my health was paramount - I didn’t want to go into a bustling office so I quit.
A year ago I moved from Oxfordshire to the North Norfolk coast. I am so happy and so much healthier now. I’ll be able to manage financially until my state pension now.
I wish I had put my health first years back.
After I left, the department suddenly grew to 15 people!!
I didn’t think I could change my work situation but I did - put yourself first and everything else will fit around your situation. I had to change my mindset but my health has benefited as a result.
Hi Jem -thank you for your kind contribution -I can see myself in so much of what you have done! Crazy how we don’t step back and see what’s happening to us. Great you made such effective changes to compliment your lifestyle. I think I am finally being forced to look at my life and make these changes- thank you
Having RA is definitely life changing but I'm sure most of us try our best to not let it change our lives, until it does! The struggle to keep going is so hard for two reasons - first because we push ourselves to do the things we still want to do which impacts our ability to function "normally" (fatigue, flares, stiffness, brain fog all kick in) but second because those around us have no idea how much more effort we are putting into a working day.Managers can be unsympathetic, unsupportive and downright obnoxious or they can be understanding, empathetic and helpful.
You probably need to become wary of your organisation's absence management and performance management policies, just in case your managers decide "you are the weakest link" - but this is worst case scenario.
Your GP, Hospital consultant, any occupational health service and the Equality Act 2010 are all on your side, so use them to help you stay in the job you love.
The best option is to consider any and all reasonable adjustments you might find helpful, both permanent and temporary.
The ones I looked at were:
a) flexible hours - starting later in the day and finishing later, to avoid rush hours.
b) taking regular hourly 5 minute walks in work time, to prevent stiffening up.
c) buying an expensive very comfortable adjustable chair.
d) using an electric adjustable desk at work, to take any weight off my shoulders when typing.
e) working from home once or twice a week (my commute was an hour each way).
f) taking an hour every lunch break, to go for a walk outside and rejuvenate myself for the 2nd half.
g) a temporary reduction in hours (without a reduction in pay - because it's a reasonable adjustment) to allow time to adjust to the disease, followed by a planned phased return to full hours. If this doesn't work as planned, it can then be tweaked or you might decide at that point that part time is the only option.
h) an adjustment in the amount of work you are expected to do to meet your satisfactory performance target.
i) an adjusted increase to any sick absence trigger points - at least double the number of days per year, to allow for flares etc
j) time off to attend any medical/hospital appointments which are required as a result of the disease.
k) if you work in a building with many floors, you probably need an evacuation plan, just in case you're having a bad day and can't do the stairs.
l) not being required to travel long distances to attend meetings, training courses, conferences etc or, if this was absolutely unavoidable, being given the following day off as a reasonable adjustment (and not recorded as sick leave - as this would be classed as detrimental to your sick record/pay).
m) for any events which you aren't able to attend, to be given remote access or some form of post event update.
All these adjustments were recorded on a formal "Work Adjustment Passport" so that any change in management could easily see what had already been agreed (otherwise you'd need to renegotiate from square one).
The more written evidence (from the medical professions) you can provide your manager in support of your requests the better. All my medics were extremely supportive and accommodating as they realise these things need to be spelt out to managers to have any impact.
Hopefully, with all this in place your manager will realise you are in fact working at a very significant disadvantage with RA but if they still have doubts, I'd recommend that they take HR or legal advice before they make any decisions. It could be very costly if they decide not to accommodate medical advice.
So, be prepared in things do go badly - make notes of everything, formal and informal conversations, requests, reasons for refusals etc - you might need these later on!
Finally, give yourself time to put all this in place during working hours. Ideally, your employers should do the leg work for you but they usually don't have a clue what to do and will look to yourself and the medics to tell them.
And, don't feel guilty! Treat this as though you only have one leg or can't hear - your employer wouldn't think twice about supporting these ailments. These are things you need to try and function normally.
Sorry to go on so much in this posting, but it is something I am passionate about. I hope it helps.
This is really helpful thank you. I’m in the process of negotiating voluntary redundancy as I couldn’t think of any reasonable adjustments that would make my work bearable. I’ll keep these in mind for when I return to work.
Oh Flinda you are truly marvellous to give us all so much info and to outline so many options. I want to print this out and I will use it to spk to my GP and employers. I am usually to shy to ask fir anything but you have filled me with confidence 🤗. My manager knows my high level of efficiency and dependability so just leaves it all to me ( my own fault for being super effecient). I seriously feel like I’m running the dept when I’m admin. I will study this response and will use it -big big thank you🤗
Excellent advice from flinda (and everyone else). I too applied for disability adjustments last year and can’t add much to what flinda says save to say that I joined a union GMB just in case and I now work from home every day. I would love to go part time but I know my employer would expect the same work for less pay/hours. I am coping though at home because I can rest when I need to. The wfh covid has changed everything if you can wfh 3 days, why not 5? I would hazard a guess your employer doesn’t have a sick bay/place you can go rest during the day, if not you need to be at home where you can pace yourself. There are precedent letters online to make your formal request. You are really well protected by disability legislation so best of luck.
Thank u Mazzarazza! Your contribution is so very much appreciated-I am hopeful good things will come out of my request if I use all the advice given here 🤗
I was very fortunate in that I could change the type of work that I did (and stop being on call at night). I moved sideways into further education and got lots of qualifications in that so I could progress. It was a lot easier (although also quite frequently stressful coping with flares) than an active job on the front line in medical care.
I just want to say a heartfelt thank you to all you amazing people for sharing your personal experiences - I am completely blown over! I have gained so much knowledge and feel confident I can now approach my GP/Rheumatiod for support to address my work situation. Blessings all ❤️
Hi AllI thought I’d let you know how my meeting went. The OH report had expectations for me to return 3 days a week so employers focus on this and expect this from next week. And on 3 consecutive days -insane! I explained all about how I feel, how the disease affects me and the contributing factors. I said I don’t feel safe when I have to face 30+!peolpe all in front of me hardly anyone wearing a mask. It is so disheartening-all they are focused on is me being in the office 5 days a week to take up my mangers work. I said I will spk to my GP as I do not wish to damage my health any further.
Honestly, if I needed to be in the office to do my job effectively I would be fair but it’s not sadly.
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