Coping but need understanding

I was diagnosed with SLE a year ago and I'm getting on with it as best I can but its very hard to explain to my employers when I feel at 50%. Is there any literature that may help them understand. Lupus still seems unknown to the vast majority. I find sanctuary on this site and think it is brilliant and so helpful and I thank you for it.

7 Replies

  • Hi Louise, I'm glad you've found the site so useful. It's been an absolutely amazing resource for me too and everyone is so helpful!

    I recently printed out some literature from for my employers. I actually gave then a copy of both the employees and employers ones found here:

    The website is a great place to start and hopefully they will begin to understand you a bit better.


  • Thank you so much! That is really helpful. Xx

  • Hi If you go onto lupus uk site and contact the office they will be able to send you some information that you could pass onto your employer, Good luck,

  • I called the lupus uk office and they were brilliant. They sent me a booklet that I gave to my employer and one I have to my family as trying to explain EVERYTHING can sometimes be quite daunting. I don't think people understand that on the surface you can look well but you know you feel dreadful and exhausted!

    I hope you find some answers and us fellow lupies are here if you need help good luck

  • Hi the sites that have been recommended are good for information on the disease but they still don't get an idea of how it affects you personally. There is a spoon theory that i read ages ago which has taken a lot of criticism but it does give a vague account for how you could feel at times. Iv shown a few people that as it helps them to see that just because they can't see illness on your face doesn't mean its not there at all. It may not apply to you as i dont know the severity or stage of your lupus but it explains in a pretty good way with a few exceptions in places. I just find it frustrating having to explain myself over and over to people and question after question...why cant you do this? Why are you tired? Why all the hospital appointments? So have a look, like i said it got criticism but it helped my employers understand more than looking at a list of symptoms.

  • Hi i emailed my manager the video of this years lupus awareness. He found it very informative. Just copy the website address and paste it onto the email!

  • The Lupus UK has lots of information but be prepared for people not to understand because you 'look ok' I think it's fair to say we all battle with this ignorance at some point or another at work and at home sadly.

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