How long after diagnosis did you find yourself unable to continue with your career?

Did you have the option to work reduced hours or do a phased return?

[Hidden]

hi have submitted this as a poll just this morning to see if nras will publish it as a poll pie chart.. I would bet money that most people are only able to work part.time!!?

I am back on phased return with notes from gp.. suggesting phased return.. they are unsure as to what do and are suggesting i use annual leave to make up the short fall!!

[Hidden]

Hi Cece, I had my first symptoms at 28 and had an admin job which I loved. I went on maternity leave at the age of 30, still not diagnosed with RA even though the symptoms had got more severe. Probably difficult though as I was pregnant, the RA then continued to get aggressive. That was that never returned to work since, have completed course's etc as there have been times especially when I started anti-tnf that I thought I was going to be ok so I tried to go back. Twice this happened but the drugs stopped working and then I felt like I was back to square one!

Have had many chats with my consultant about this but he now recommends to keep my life at a comfortable pace where I can cope as he feels when I try to do more I tend to aggravate the RA!

I miss working though, the social aspect of it all really, and the escape from RA.

mand ss

[lulul]

This is a huge issue for me. I used to work part time as a specialist community speech and language therapist. I haven't worked since Nov 2010 and I am desperate to get back. My job is very demanding both mentally and physically and every time I get close to thinking 'I am ready' I have another set back. I have to see Occupational Health next week to discuss a phased return and adaptions but last time I was so exhausted getting to the appointment the dr told me to go home. I have begun to consider the fact I may never get back and it has devastated me. I have days which stretch out endlessly and I feel like I am in limbo..if I gave it all up I may be able to 'relax' into it and move on I suppose. I am resistent to that after 4 years training and twenty years experience. I miss my work as it was part of my identity. I was good at it and although it was stressful I also gained alot from it.There are relationship and financial consequences to giving up too. No easy answer to this one sadly

[Gina_K]

Hi, There is some statistical evidence on this and I think it makes grim reading, in fact I saw it in early days and got quite upset, I think it may be 60% of those diagnosed with RA wil be unable to work within 10 years of diagnosis! However, I think this may have been evidenced prior to anti tnf and more progress in the treatment of RA (I hope anyway) I'm keeping on working though not full time!

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aah gina you have answered my question on this blog

alison x

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hmrc.gov.uk/employers/ssp-f...

Here is a link about phased returns and your rights etc.

I was told by my welfare rights officer that my employers would be cruicifed if they tried to sack me due to my health and time off sick etc.

They told me if I wish to carry on working and can only manage a few hours a week then my employers would just have to work round it.

However my employers have been very good allowing me to work the hours I can as everyday is different I can some days do as much as 5 hours but on average I would say its more like 3 hours.

I dont know about you but I am really determined to keep working after all I have to keep looking on the bright side maybe my Enbrel will start working soon and I will be able to manage more I am trying my best to look away from the thought off it getting worse if it does I will deal with it then but at the moment this is hard enough to cope with so dont wish to think about getting worse.

Take care and I really hope you manage to stay working my rheumy did offer to sign me off work, but I told him I think staying home all day would send me mental and I do belive that even if I only get to work for 2 hours a day it keeps my mind going.

Julie x

[Hidden in reply to Hidden]

Hi Julie, good on you, I don't blame you for wanting to carry on working even though your sometimes put down by comments about your disability and having time off, be strong girl!!

I always say if your working hang onto your job because once your out it's so difficult to get back into work again, who wants to employ someone who as to have regular time off because of flares,hospital appointments etc.

Like you say you do have more rights now when your sick and working.

Take care Julie.

Mandy xx

[AMDP]

Hi, I am self employed and reading the answers to this question has made me even more determind to keep going. So thank you. Ax

[Tricia-P]

Hi All I pushed my self last year to carry on working all be it 4 out of 6 based on 28 hours, as a travel consultant with ** years of practise, I found that the travel to work and home was getting dicey then at work I had to double check every thing I did as I could easily send someone to belgium when they wanted Bali or worse dates wrong and not getting the right number of nights etc.it came to a head when I started feeling so bad in the morning after either no sleep or slept unconsious after amitryptaline and pain meds. I have had to realise in my own way that i was pushing myself too hard to prove what, nothing as you are only as good as the day you are at your desk as people around you say yes they understand what you are going through as they have arthritis in their knees, yes that is painful but thats it, the fact that you feel like pooh and its not just a knee its also the tiniest joints in your toes and fingers and then the big joints as well. If you have been off work like i have since january and still signed off until middle of June a phased return to work would HAVE to happen as even being off work for a 2 week holiday its horrible having to go back and think and remember so many things.

So please take it easy and make sure you are prepared ask for an OT visit to your place of work and then talk to HR or whoever about the hours you would like to try the law is on your side in this case. Sorry all I had a bit of a rant, but once again please don't feel that you have to as you don't !!!! xTriciax

[Gina_K]

An electric stapler, an ergonomic assessment of work area, and a sympathetic co worker near by is helpful. Also a footrest and an wrist rest. Hmmmm I quite like going to work at least my body gets a break even if I get cross eyed working on 3 screens at once! LOL x

[Hidden]

Thanks everyone - Summer I hope they do post a poll on this - I was self-emploed which is the worst situation as I just fell from a great height with no safety net but my own savings

However, I have retrained over the past 7 years and am self-employed again as this seems like the only way that I will get employment and I can set my own hours and rest periods. However, I have accepted that I will never work more than part-time hours because with travel-time that's my limit and I go over it at my peril!

Apart from the financial implications (single - so no work equals no money) the psychological benefits of some kind of work or even volunteering regularly should not be disregarded. If like me you also live on your own then getting out and having meaningful contact with others and a sense of purpose is vital. The unpredictability of this disease means that for me it's best to just take each day as it comes - good and bad - and really notice the good things and small pleasures in daily life

It's important to have goals too, things to realistically aim at, it may take me longer than the average bunny but I do get there in the end

Hugs,

Cece x

[Hidden]

me single too.. hugs too and to every one on here love alison xx

[Hidden]

Having worked really hard to become a manager at a Legal Aid office, I went on maternity leave, had my daughter, developed RA, returned to work for three months and ended up too ill to do anything! On sick leave never to return and medically retired at the age of 32! Not good

However,since my family reached their teenage years, I started to do voluntary work here and there which does add to the quality of life and you don't quite feel you're on the scrap heap! As Cece says having that contact with others can make a really big difference to your well being!

Thankfully meds are now much improved as is employment law" so hang in there as long as you are able

Lyn x