Seem to be having a frustrating time explaining to work colleagues what lupus is...seem to be having the same conversations with managers every week. they are suprised when i tell them every week i feel exhausted, and recently suggested i get more sleep cos that would cure it lol i wish it was that easy!!!!
its like groundhog day!
Hi It may be worth giving them some leaflets from Lupus UK to help explain.
The "spoon theory" is also good explaination of need to pace/ lack of energy etc butyoudontlooksick.com/arti...
Perhaps get your GP to write a letter that you could use with managers Occ health etc that explains your symptoms & how sleep can be "unrefreshing" in Lupus
I've done all that, given them all the info provided by the hospital, drs provided medical report, given then spoon theory......I'm gonna end up banging my head against a brick wall lol
Oh this sounds sooo familiar. I have put up posters and tried to educate colleagues but still appear to think I'm skiving. I think that we are the only people who don't like to be told "you look well". Good luck and I will pass any tips on....
Hi I had to cut my hours down to 12 a week, when my boss asked one morning how I was and I said tired she said how can you be you only work 12 hours, I have given up trying to explane. Anyway they have made me redundant now, so now I will have to explane to the job centre now, wish me luck 
It's an absolute nightmare.....ill end up shouting from the rooftops soon lol tryin to explain that my tiredness is different to there's! Oh well it can't get any worse lol deffo considering reducing hours, 35 a week is impossible x
hi all
the problem with saying we feel tired is that no-one understands the difference between our tired and theirs!! a day in bed solves their problem but it does nothing for us. I once saw it described as toxic exhaustion what a great name that is that makes it sound different so slam them with the spoon theory and call it toxic exhaustion.
love to all
tupa xx
Do you think that your employers would watch one of our DVDs if we sent one to them? Perhaps they would have more patience watching something rather than reading it?
Off work feeling guilty
Have to go back to work
Understanding work colleagues 
Hydroxy Works. I'm Chuffed!
Resonable adjustments, problems at work. 
