A question for those of you who work(ed) - LUPUS UK

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A question for those of you who work(ed)


I'd like to include a couple of quotes from people with lupus for a new publication. Would anybody be prepared to share their experiences of telling their employer about their diagnosis and what happened next? I'd like to hear good and bad if possible. Please try to keep them fairly succinct.

Thank you.

10 Replies

I only told my employer earlier this year when I was diagnosed. They had supported with time off for appts and investigations as I was unwell but when I said Lupus, they said "What?" I explained (with the help of Lupus UK publications) and they said if I needed anything too ask. So far they have been very supportive of me.

I also had an OT assessment... details on other post

my employer hasnt helped one bit so far, even remploy got involved, not a lot of people know about lupus and how it can change everything in your life, l think it all depends on who your employer is

Got fed up of being asked if I was better yet?? despite having explained in detail about it being a chronic illness. I left and became self-employed.

I consider myself lucky. After I told my new GM that I had lupus, he called my in the next day to say that he had gone away and spent a long time researching it. He said he wanted to full understand what I was going through to provide appropriate support. All the recommendations of the OH assesment were carried out to a T and he very regularly called me in for quiet chats to see how I was coping. When my role as Marketing Manager became unsustainable he offered me 12 hours consultancy.. When that became unsustainable I got a truly memorable sed off after 23 years in a job I was passionate about. His approach made those last 2 difficult years bearable. I know I am one of the lucky ones.

I worked in a senior school, the headmaster was brilliant with me and read up on Lupus. Then I was ill for 6months and when I got back a new head master had taken over, he sent for me and asked what it was that was wrong with me - I said it was an incurable Auto-imune desease and he took TWO STEPS back away from me. I could not believe it, I just said you could not catch it and walked out. That was allmost 20 years ago and I still feel the pain and humilitation I felt.

Best of luck with your publication !! Although I can't share what you are looking for I have just been recruited (Lupus and all) to work in whatever capacity I can manage ... there is hope! X

I have both good and bad experiences. When I was employed by Global Multinationals I was made redundant twice following serious flares & hospitalisation - they clearly knew what they were doing was wrong as both times I accepted a payout with accompanying 'gagging clauses' - I was far too ill to fight the mighty lawyers they could afford, so i took the payments and kept schtum! My current employer of the last 8yrs is absolutely fantastic (a Christian Charity) and has supported me through two major flares and a breakdown with regular OH support and changes to my working hours with flexitime and 'no spoon' days.

Hi paul, I informed my manager as soon as i was told i had lupus sle, she just looked at me with a blank face, i explained my condition to her and the words that came out of her mouth was, oh you dont want head office to know they will sack you. Oh lovely! i have to try and force myself to go to work, as i dont get paid company sick pay, and i go really when i shouldnt i just cant afford to not go as i have a house to keep, one day my shift is 7am start which means im up at 5am i could cry with pain if i let myself, this is a delivery day where my day is lifting and replenishing the store i work 7am till 3:30pm on this shift havr half hour break, which i have to try and eat something to take my meds, ive really tried to explain to my work place that this shift really affects me badly and it takes me all week to regain my strength back, ive noticed that shes cut me down to 2 delivery starts a month ar 7am my other shifts are more normal, if im having a bad day and say im feeling really terrible, she just says, ok and expects me to carry on as normal working my socks off, shes informed head office i have lupus but i have no support in work what so ever..i had been awake all monday vomiting in agony from 2am till 6am and then my alarm went of at 6:30am for work i tried to get hold of someone to cover my shift and no one would answer so i had no choice but to get dressed and go to work as i was opening the store, i even worked out how much i was to get paid for that day to see if i could manage without the money. It is so bad that my company can get away with not paying company sick pay for people like myself, i could really do with the finacial help if im to ill to go in for a day or two as ssp only pays after the waiting days and before then icould be better but havent had any wages xxxx sorry for the rant xx

I cannot help much as I was self employed at the start having my own hairdressing salon, when that became too much I gave it up I then went on to working a part time job that gave me enough time to rest in between but with the ability to make good commission, so i never had to tell my employer about Lupus I did have an amazing line manager who was very supportive as she knew I gave 110% when I was working . With lupus we have to be prepared to adapt which I feel we are all capable of .After all we cope with LUPUS

I told my employer who had been really supportive when I was unwell and awaiting diagnosis, when diagnosed they were supportive and offered to make any adjustments needed. They changed my role and responsibilities to facilitate my limitations. Overall I couldn't have asked for more, sadly however the long and short of it was I was too unwell to continue doing my job, as helpful as my employer was the job needed to be done and I was no longer able to do it. They supported me to apply for ill health early retirement and wrote supporting reports confirming my level of motivation, commitment and diligence to the job.

Again, hope this helps.

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