I was diagnosed with SLE approx 7 years ago. As the years have gone by it has got worse. The one thing I find really hard about this disease is that you look "OK"! You may be in absolute agony with the pain but you look ok so people think that you are not genuine. Also, trying to explain to people about the fatigue, well, they just say everyone's tired!!!
If you had a broken arm or wound of some description people would be more understanding because they can actually see there is a physical problem whereas with SLE, you can't actually see anything unless you are suffering from a flare up.
I am a security officer at an airport and work shift work. I have been doing this job for the past 2 and a half years and am finding it harder each year.