lowicklady5511 years ago

I shall hopefully be in your position soon. I think that personally I would tell them about my lupus and give them the card that you can get from lupusuk, that tells all about your illness and that it is not contagious!. Best of luck Liz

Hidden11 years ago

Shay1 - please do tell them. You don't need to make a song and dance about it, and if it is a big organisation they will have an occupational health department which should be on your side and may be able to help with lighting and other equipment.

It is against the law for them to sack you, but I think you are being optimistic about 'sitting down'. What about mental fatigue and brain fog? What about having to get up and get to the office at a set time each day? Will you be driving or walking or using public transport and for how many minutes each day? All this stuff takes it out of you when you have lupus - where or not it is'controlled', and I speak from long experience when I say that staying well and not letting the lupus progress should be more important than money or career aspirations. I slogged my guts out for years in a demanding job, denying that my lupus was a serious illness (and was taking MTX and steroids). I ended up with lupus nephritis and kidney failure.

All this sounds very negative, I know, but it is not meant to be. People with lupus need the support of their employers - and you won't get that unless you tell them.

Good Luck!

mstr in reply to Hidden11 years ago

Hi Maggie, I too am having this dilemma just now...to return to work in the next few months or not. It is such a big decision to make and I have two trains of thought. One I went to uni and worked hard and enjoyed my job as a social worker and two if I try to do this job again will things progress as you say. The sensible part says to give that up now (I'm 50 and always worked until last year) but the other part of me still thinks I have lots of experience to offer and it's hard to just let go of a part of your life where you felt you contributed, doing something worthwhile and were valued. No matter how much your family can say you are worthwhile and my husband says I am at the centre of our family without work .....bless.....it is hard to change the habit of a lifetime. Your post has made me really think though....I am now in physio and have just been diagnosed with proximal and distal weakness due to underlying connective tissue disorder. It is a dilemma indeed and one I know I need to think about over the coming months. It is so intqeresting to hear different view points and I am so sorry that your health seriously deteriorated when you when back to work. At the moment I am only on hydrocholoroquine/quinoric (400 mg daily) but I can still feel the flare up's even though they are less intense. I also think that my family are the most important things in life....so to swing back and forward about which decision to make is just madness on my part I know. I think in part because the hydrocholoroquine has after one year helpe a little that I am better....whereas the condition is still there and needs nurtured. I guess it's time for some serious thoughts. Thank you as it has caused me to think through this in a balanced way x

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chrisj11 years ago

12 months is a fairly long time and you have no guarantees that your health will remain stable...Maybe your employer should be made aware with assurances thats its all under control and shouldnt be a problem??

I got a form to apply for care work some years ago, it had a list of health problems you were asked to declare...SLE, osteoarthritis and asthma were 3 of the many things on the list that I have.. I also have sciatica and prolonged standing, walking etc aggravates it..I didnt see the point in applying, not a good feeling but I didnt want to be a liability to the company...

SNOWWHITESHELLY11 years ago

Good luck with your job! Only YOU know how you think you will manage with the daily challenges at work. Hopefully you will remain in good health for the 12months. I had a temp job at a school which was going really well but coincidently when they found out I had SLE I was no longer needed! Wishing you good health and best wishes xx

Lg196811 years ago

I think you would have to tell your employer as 12 months can be a long time health wise. It may mean you take a risk with them employing you but I always find being honest can give you better results. The stress of being on edge that someone may find out wont help your stress levels and if you do get ill over the winter at least you were upfront and honest. If it's only a 12 month contract you will prob find they are willing to give you a try as it's not a long term commitment and toucan show them how well you are over this period. Hope this helps x

Lg196811 years ago

*you can-silly predictive text!!

ijeasike11 years ago

I think it is a good idea to let them know of ur condition. I too have been on maternity and i had to get three months sick leave added bcos am still on my course of cyclophosphomide. it was meant to end this month but my doctor said i have to have 3 more infusion bcos they where under dosing me that why my lupus is still active, it bothers me since i was planing to start work in January. I had informed my manager that i hope to start in january and i also asked him if i could be changed to a different department (office work) cos i cant continue with the care department. It really worries me cos he is not certain of the admin postion am just hoping and praying i get an admin position. I also gave them details of my condition and my treament. I really need to go back to work cos i need the money.

I sincerely hope ur office will be very considerate when u tell them and i know u will be fine but please dnt over stress urself cos u know we are not friendly with stress and fatigue.

xx

rara1234511 years ago

Awww good luck, hope it turns out well for you. In my case, i recently graduated uni and found a great job as web/graphic designer in a successful company but after my 1st day at work this monday no contracts signed, my illness kicked in so i was off the rest of the week. The company called me back and i explained to them what i had on the phone cos we didnt have time to talk over my condition as they were out all day in a meeting. Basically they phoned me back after i say it was just a hiccup and it can be controlled and not contagious. They still had to let go of me.

Hopefully this doesnt happen to u so tell them straightaway and be honest.

Now jobless again

shay111 years ago

Thanks everyone for your advice, Initially I didn't want to say anything because I was really nervous for my interview and I didn't know how to bring it up.

I have changed my mind though I want to speak to the manager just before I start and (fill out any forms about health) tell them about my illness to make them aware, even though I think I will be okay, I am worried if i don't tell them, they wont understand why I am always tired. Also the stress from them finding out will eat me up. I have also heard that people with illness's are intitaled to Access to Work, which is an organisation that helps people feel more comfortable at their work place with special chairs and keyboards ect. Also its free for your employer for up to 13 weeks after you start your job, I feel I will benefit from this as even though I am very well (for someone who has lupus) I need to think of my health. I guess initally I was so excited about working and I didnt want anything to spoil it, but I know its not good to be in denial about my Lupus I need to learn to accept it which I still find difficult whilst trying to lead a normal life, I am only 21 so its all new to me I dont know how to judge the work place or how they will react but finger crossed they will be okay with me and respect me for being honest and take a chance on me xx

Lupoid11 years ago

I already see this question has an answer but my own experience has been a interesting ride.

When I was first diagnosed I was working for the NHS and as soon as they had to look at "reasonable adjustments" their attitude towards me completely changed. If I'd had the strength to fight them through a tribunal I would have done and gone for disability discrimination/constructive dismissal.

My current employer I was open with from the start and they have been nothing but a blessing. They have spent a lot of time, money and effort in making my work life as easy as possible.

Not all employers are the same but there are laws, etc. to protect us from most discriminatory situations in the workplace.

Sher7811 years ago

Employers SHOULDN'T discriminate, but they do and it's very difficult to prove that they HAVE discriminated. I have gone 4 interviews b4 & been practically offered the job on the spot...but then I mention lupus :0/ They then tend 2 say I'm 'over-qualified', 'They want someone with more/less experience' etc etc. Because people don't know about lupus, it makes them nervous. At my last interview (going back 12 years ago) I told my employer that I had lupus & just said it was an autoimmune disorder & a blood disorder (I also have APS). That was basically all I told them, didn't mention Raynauds etc. Most people don't have a clue what lupus is anyway and u ARE telling them, just not going into too much detail about it. I too worked 4 the NHS & unfortunately started having my first severe flare in 16 years 2 years ago & I've got 2 b honest, my employers bent over backwards trying 2 make things easier 4 me, even allowing me to go off & have a kip when I needed 2! Sadly I ended up having to leave as I spent 18 months off sick and eventhough they offered me flexible hours etc etc I couldn't commit 2 anything as the flare was so savage and I couldn't estimate how long it would last :0( So I would personally say be honest with them, but don't spill u're guts ;0)

fredfar11 years ago

My last boss and employer was really good about it as they had a occupational health department and even referred me to their own doctor, however i had been in the job for 6/7 years. However after 11 years service our office has been closed and now im looking for reemployment again, and im in 2 minds with telling any new employer. Only thing i will say is if they know they should support you and allow some consideration to you. even in an office job i could not sit for long periods without the need of getting up and walking around or stretching. But the biggest set off of my lupus was stress, so if going to be a stressful job, then they would need to know. Plus if i needed lighting changed etc, they had to do it or move me to different desk. I have learnt you will be surprised at who has what illness knower days.