Hi all. I've got Lupus and Fibro and am struggling to keep working. I've just had 2 weeks off sick due to being in so much pain. My meds have been upped by my GP but when i got home today i was in so much pain i just had to sleep. I have an OH appointment tomorrow, over the phone of all things. I am fairly new to my job and my team leader is unsympathetic. She keeps failing me on my probation as she says i don't learn things quickly enough. I feel ready to give up work as it makes me so miserable but am worried about surviving on benefits. Any advice?

11 Replies

  • Hi Hells23, i am sorry to hear you have lots of pain and an unsympathetic manager. I have fibro and severe degenerative disc disease and am in pain 24/7. Ive been off work for the past 8 weeks and after 18 years in my job i have asked to be considered for ill health retirement. Im 43 and cant struggle any longer with work. I havent applied for esa yet as i have another 12 weeks company sick pay. I am awaiting an atos visit concerning dla that i applied for last oct. I will be so much worse off financially but am sorry to admit the pain has won me over. Im putting my health first for once and my family agree. I suppose what im trying to say is do what is best for your health,lots of members have had to give up their job. Have OH tried reasonable accomodations with your employer? Some people can manage to work with maybe shorter days,decreasing hours etc. I had tried all these and still couldnt manage. Most days now im housebound or in bed with pain. I think you should speak to your family about your pain and also if you have a union you should involve them as your manager seems very unreasonable. She is adding stress to your condition which is not good for fibro. Keep us informed. Gentle hugs mags x

  • Hi hells23,

    Take a look at our booklets for those that work with lupus and their employers. They have lots of useful information and advice for you. You can view and download digital versions here - or if you require physical versions you can send me a private message or email with your name and address.

  • Hi Paul.

    I did print off copies of your employer guide to give to 2 managers when i knew they were going to fail me on my probationary period. I have no idea if they read them. They just expect me to get as much done and learn all the new things as quickly as everyone else. The strange thing is that i work for a charity that helps people with problems (but not their own staff)!

  • If you feel that you aren't receiving enough support or are being treated unfairly, there are things that you can do. The guide for people that want to work has some advice about routes that you can go down.

  • The best thing I ever did was to give up work. You will survive on benefits as long as you live within your means. You've paid your taxes all your working life, you're entitled to it. That's what it's there for. As long as you have back up from your medical professionals it will drastically help your condition by releasing a lot of stress over whether you're fit enough to work today, pay the bills, in too much pain to do anything etc etc. You're condition is so unpredictable how can an employer expect you to know one day from the next what you can do if you don't even know yourself. Seriously think about whether working is really worth the deterioration on your health.

  • Hi hells

    So sorry to read you've Lupus and Fibro and struggling with work.

    Could I advise that you go to your local Citizens Advice Bureau who will help you deal with your unhelpful manager and OH Dept as they have employment advisors. They will also help with benefit claiming if you change your hours or have to give up. They do a benefits check and will help with the form filling as that has to be done in a certain way to maximise success. I hope I've helped and best of luck.X

  • Thanks to you all for your advice. I had my OH review today so will wait and see what they say. I would like to give up work as i feel so much better when i'm off. Trouble is that i am single with an unemployed son living with me. I have a loan to repay plus over-payments on tax credits and housing benefit so don't know if i'll cope financially.

  • Hi I have been off work for 6 months they think I have undiferanciated conective tissue disease ,sjorgrens fibro , psysoris ,raynaulds phenomem, Gilbert's reactive arthrits and I had lupus antibodies in my bloods last august I am also haveing bowel issues breathlessness and there are some concerns with my heart :-) anyway I was sacked last week as I can't give them a return to work date. I have been told no stress so I am not fighting it .i am going through a lot of thought processes , and I am worried but my daughter is trying to keep me distracted but that's something for another day , I have decided I am not living to work ,if I can work again which the rhummie has said he will get me well enough to do I will work to live , I am know taking everything one day at a time and not playing my old game what if ? And team leaders are something else arnt they give the wrong type of person a little bit of power and doesn't it go to there heads , just tell yourself there time will come ,you may not see it yourself but bully's always get found out ,put yourself and your health first be kind to yourself ,my GP told me I was not to be bullied into going back before the medical profession told me to ,I nearly put my self into a pine box this year because I was worried about how I would cope , I have been off work 6months as I said I am 52 been divorced about 7 years I actually forget how long , and I have managed it's not always easy but I am still ill but I feel better now than I have felt in my head in years ,I am kind to myself now ,I put my health first, not the company . I have 3 children all live away and the youngest who is at uni is off to japan in late September so I will not see any of my children till Christmas ,but we have face time etc ,I have a more optimistic view of things now the pressure of work isn't there I have CAB helping me I have applied for ESA and PIP and a local charity comes in to help with like changing my bed , I manage everything else now ,but 6 months ago I couldn't do very much at all , social services have given me some equipment so I can do things round the house and I have a blue badge even if you don't drive if you get one of those when you are in a car it's helpful . Good luck ,keep your chin up it will be ok :-) xx

  • Well done you for keeping your chin up. I was told recently that you don't have to give up to give in. That's so true. I feel it is time to give in to my illness but i'll never give up. To get PIP and ESA do you have to have run out of SSP or can i just quit my job? I've been back 2 days now and i'm knackered and in so much pain. I've booked a holiday to get a rest but think they'll see it as "if you're well enough to go on holiday you're well enough to work". Not like i'm going mountain climbing or trekking, just a nice quiet week at the coast. Hope it works out ok with your ESA and PIP claims. xx

  • You can claim pip now ,don't give up work you have to put up with your employer doing whatever processes they have in place just go chat to your GP tell them how you feel be honest , get in touch with CAB that was the first thing I did back in march , if you hand in your notice you won't get help , my GP told me not to be bullied by my employers ,it's easier said than done I know but if your GP is happy to write your fit notes you should be fine, I was suspose to go away with friends but didn't go as I felt I would of spoilt it for them as I would not of been able to go out every day ,I will get that I can once I am been put back on hydrocholquinne ,ESA you can claim once you have been off sick for 26 weeks consecutively , good luck sorry it took so long to answer ,I didn't get a email you had replied it might have been me hitting the wrong button this morning , been a bit rough today , your priority should be to you now on getting well, take care ,Chris x

  • Hi, hopefully your Occy Health will help with things at work and your team leader. They should recommend adjustments at work to help you deal with your symptoms. I've had mixed experiences of my work's Occy Health, but hopefully yours is better.

    In some ways, I am "lucky" that some of my symptoms are clearly visible, or show up in blood/urine tests, scans etc so it justifies me taking time off work. But less so, when I am fatigued or my joints hurt but are not swollen so things look normal. I feel like I've won a moral victory when I get an "invisible" flare up, then become worse and my GP signs me off.

    I'm sorry you have such an unsympathetic, pathetic manager. I'm in a similar boat. My last appraisal was marked down citing my sickness absences as a factor. I argued they should appreciate the effort I make to get into the office despite my symptoms. There are others in the company who have lesser problems, but who take more time off than I do.

    It annoys me when people pull a sickie after a night of boozing (work's night out, birthday, stag/hen night etc) and their absence is laughed off and condoned. But when I am ill by something beyond my control, then that attracts tuts and comments of "is he ill again?"

    I've said on numerous occasions that I'd give up work if I could afford to. But I can't, so I plod on saving every penny I can and missing out on holidays, flash cars, smartphones etc and instead put the money aside hoping I can retire early.

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