Hi just wondering if any one else out there has problems with their work place mine are very not understanding and don't seem to understand lupus or the different unusal things that go with it .they always putting obstacles in my way I have to fight over which makes me look the bad person .all I try to do is get on with what I can manage but that doesn't seem to be enough for them ...totally fed up ..With their attitude they have had all the booklets and info and doctors letters but not listening ..Thanks for reading sorry having a moan ..lupus makes you feel like that sometimes .

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Don't ever apologise! If your employers are ignorant that's pretty sad!!!!! Mine are excellent & im very lucky in that! However, what I found was individuals aren't understanding, so I wrote posted a very personal internal note explaining how lupus affects me personally ( as it's different for everyone) but also included links to factual information about lupus so people could learn more about it! Made a big difference!!! People in work now don't stare at me because how I dress (light sensitive) or if hobble (stiff joints if sat too long) or wince at times (because I'm in pain)! Xx



Mine didn't use to be understanding and again, I think it was down to individuals.

If u don't already belong to a union, please join one. I belong to Unite and they have been a godsend.

I find that if a company can almost bully u out of the business, they will. U have to find an inner strength and fight them all the way. Too many people with lupus just give in to them!

Stay strong, fight and join a union.


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Hi barbdockeray

Sorry to read you are having workplace problems. Just want to say that Citizens Advice have employment advisors that can help with any problems. They also have a good website with info and links to other sources of help.

Something to keep in mind, hope it improves for you. X


SLE is a disability. Discrimination because of said disability is illegal. Citizens Advice bureau may be helpful. Your employer HAS TO make reasonable adjustments such as lighter work and reduced hours when you are having a flare up. I speak from experience. I went through all of this before being medically retired this year at the ripe old age of 51. Stay strong; you have rights.

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Hi Barbdockeray,

It sounds like you've probably already seen it, but if you haven't, you might be interested in our booklet, 'I Want to Work: A Self Help Guide for People with Lupus'. This can be found here:

It has a great section entitled 'When should I get help with my job?' that might be relevant to your current situation.


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Hi there im really sorry that your employer does not seem to be very understanding to your health problems. Perhaps ask to be referred to their occupational health who should be able to make life a little easier during your time at work. I have to say that at the mine are pretty understanding and my line manager in particular is brilliant and super supportive. Keep pushing to make urself heard and try speaking to HR to get you referred to occupational health . Hope it all goes well.


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