Work!! Or not to work!! mmmm: Generally people with and... - NRAS

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Work!! Or not to work!! mmmm

11 Replies

Generally people with and illness and not working would so love to get out into the working environment, and yet people who do work would probably want to stay at home.

Of course finances have a large part to play in all of this, but I can only speak about my situation and, not working would of course love to get back to a normal working routine. Some people may say I am lucky to be at home all day being able to rest when I need to.But, speaking from experience it's not all about that it's about having a social life, being able to have a life away from the RA. to me being "normal".

Some of you are probably shouting at the screen now saying "you don't no how lucky you are",or "its easy for you to say "but believe me it's not how you think it to be.

I miss my friends, the chats about normal life, getting my mind to focus on something else.

So, if you are in the situation of working and would love to give up I would say to think very carefully before you do. If you have a job hang onto it even if you have to have reduced hours etc, your employer should do all he can to help you (not always the case I know) but if you decide to leave it's so very hard to get back into employment with RA or any other illness due to time off for hospitals and flares etc.

That's probably why I love to chat on here so much, I find it easier to talk about RA to others in the same situation and its great to know I have some new "rheumy mates"

Take care

mand xx

11 Replies
Gina_K profile image
Gina_K

Hi Mand,

I agree think it is better for you, to work with RA than not if possible of course. I work part time and although it has been very hard by times, I am glad to have my job. I agree I think i would not find another job with this condition, the work place is very competitive and I don't think many employers want people with med conditions. Maybe with an incentive to employ, they would.

HI Mand

Deciding whether or not to work is such a difficult and personal decision.

I work Part time and when I was diagnosed in Oct 10 my Consultant said that I would not get another job easily so I should not give up the one I have.

That was a shock to me but when I looked into the sit more I decided it wasnt as bad in reality as theoretically ( I know it is in theory) we should not be discriminated against because of recent disability legislation.

If we do declare ( our disability) then hopefully we are covered by disability discrimination Act which gives us lots of protection and employment rights. Some other more diverse and inclusive organisations are probably more up to speed with this than other smaller companies. As I said before if I do have to give up work at some stage then I am going to try to do something voluntary if I am well enough, that is gentle but gives me something to focus on other than just RA. Currently taking life a day at a time and trying to smell the roses as it were. Guess we all get that one .

xx

in reply to

yes good i agree

Beeper profile image
Beeper

Hi I am working part time at the moment and feel that some days is it worth getting up and going in but in the end I love having my own income and not having to ask for hand outs even if we are entitled to them. I hate the days off I have to watch day time TV. I was made redundant from my last job and with RA was told by all to give up getting back into work and just st back and take it easy. I felt I was being put on the scrap heap. I went to sign on at the job centre and whatever your views are about them they were really helpful, They out me intouch with a disability people who looked into my case and got me a six week fill in position and access to work transport. The company saw how much I wanted to work and how my skills would be wasted and the six weeks have now turned into six years, so don't give in and let them tell you, you must watch TV and relax, get out there.

Tricia-P profile image
Tricia-P

Hi all

I'm sure you will realise from my blogs that I've been worried that i would lose my job, as I've said i work in travel and it's one of the nicest careers you can have. Basicaly you are making people happywell we hope we do the thought of sun sea and sand or skyscrapers museums and yellow taxis if thats your idea of a good time we can help. so with the industry as it is with ash clouds strikes and war or violence,we do the job for the love of it not the pay. Knowing that the company i work for will wait for me to get over this flare and then op.I'm a happy bunny, as long as theres a downstairs loo.

tricia x

I got dumped on the scrap heap 20 years ago when there were no such things as disability law, employer awareness etc. I couldn't do the job, basically because I was too ill, and I was medically retired on those grounds. Subsequently I retrained as a counsellor but have only ever worked for voluntary organisations.

The nature of this illness is such that I honestly don't think I could be a responsible employee. I couldn't guarantee to be one the job when needed. The voluntary work I do I fit into my schedule ... if I don't feel particularly well I take time out.

That said, being part of a working environment is so important for the social aspect and that's the worst bit of being at home. Not so bad when I used to take and collect the kids from Primary school and there was interaction with other parents but as they grow up that comes to an end and you're left feeling "where's my place in society"!

I now get quite involved with our local NRAS group and with friends I have made through the forum. I'm meeting up with one of them for lunch tomorrow so am feeling quite excited about that (plus I can stuff my face for once!)

If you've got a job you can do, hang onto it, others are hard to find. If not, it's a case of finding something that uses your time and engages you socially. Ahh... c'est la vie!

Lyn x

in reply to

Hi Lyn, yep that was me too, dumped liked nothing.Not being able to do the job I loved anymore because of RA, so unfair but we carry on we had too. I know what you mean about being reliable as I think our RA is so up and down. Life is what we make it now ,didn't realize you were a trained counselor (is that right?) I could have done with you a few years ago, I was referred for councilling then but as your someone who understands RA it would have been so much better to talk to someone like you.

mand xx

would love to not work or do voluntary work.. but i would miss the social aspect and stimulation.. also on my own with bills and mortgage... you can guess the rest..., my outgoings food, petrol, bills. are within 10 pounds of my take home pay... hence cash flow or lack of it can be a real problem... thinking of putting french hol students in my spare room.. im being vetted on sat.. but am fully crb checked so many times.. having worked in healthcare and education.. have told them have tow cats and that they wont be allowed in the bedroom.

in reply to

the cats that is not the students lol x

It is such a dilemma for all of us and I think you have to be realistic about what you can manage balanced with making yourself feel worse.

I started a new part time job 2 1/2 weeks ago. I only work 4 hours a day and I have found it really tiring and know I definitely couldn't manage a longer day. The positive side is I feel better mentally & emotionally while I'm at work although I did have a major guilt trip last weekend at home as I was exhausted and frustrated about the stuff that needed doing at home.

Financially I have no choice but to work. I have probably done totally the wrong thing in not declaring my RA to my new employers but over 400 people went for the job and I couldn't afford to not get it. I know there are laws on discrimination etc but I just didn't want to risk having RA affecting my chances. Working part time means I can fit my appointments round my job without them having to know. Who knows what will happen in the future!

I also enjoy just being known as 'Ann' and not 'the woman with RA.' I enjoy the 'vibe' of working, feeling useful and being around other people in a different environment to home.

I hope you are able to find what works for you.

Good luck xxx

in reply to

Hi Ann. hope your feeling better than you were over the weekend I know you were having a bad time. Good on you for working, sad to say it but your probably right about not declaring your RA even though it seems so unfair.

Being known just as "Ann" I so smiled at that comment because that's what I miss, when people see me now they only see my RA not me as Mandy. It's as though you can try to shut out the RA for a little while and be a "normal" person with a "normal" life while your at work.

Very hard work for you though especially with the children.

Take care and look after yourself.

mand xx

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