My main problem with Lupus is the fatigue. Its hard to explain to people how I feel. I'm sick of people saying "you look well". I can't remember I day when I actually felt "normal".

My family and friends are very supportive. But, I can tell people at work don't believe me!!!

Does anyone else have to deal with people not believing?

Yes, my friends try to be supportive, but they just don't understand. I was just diagnosed with SLE, Scleroderma, and Raynauds in May. I think it's easy for my close friends to see that I struggle with cold hands - all I have to do is show them when they turn blue. However, it's hard for them to relate to what I'm going through.

Frankly, no one wants to hear a sob story all the time, or at the least, I don't want to tell a sob story all the time. I liken it to the scene in the movie "What About Bob?", when Bob describes his symptoms to the psychologist...dry mouth, cold sweats, hot sweats, difficulty breathing, difficulty swallowing, numbness, dizziness, fingernail sensitivity..etc. LOL That's how I feel. If I were to explain how I really was to everyone that asked...well, we all know how that goes.

Hopefully, you can find at least one person who will at least listen to you, though it's difficult even for a close friend to understand if they do not have the disease themselves. That's why you need people like us to talk to.

-Jared

Hang in there. It's often tough to deal with people who don't understand and/or "get it".

I was dx in 78 and to be honest not a great deal has changed...unless you have a limb hanging off or something in a cast...well we dont look ill if you like...very annoying.

I realise I am lucky. It could be a lot worse than Raynauds, fatigue and joint pain/swelling! But still, all this extra stress does me no good at all. x