Last updated: June 2023
I've had Lupus since I was 8 and now I'm 47.
Lupus is a life sucker
I've been in and out of hospitals. I'm so blessed I was able to have one child. I have a very wonderful family. Lupus is a life sucker. It sucks my energy so I can't do things I want and need to do. It affects my skin so people stare which is fine. The pain in my muscles and joints are horrible, especially my hips.
Tired of missing out
I have Crohn's disease also. It's IBD. So that's fun. I don't have a normal life. I can't go out in the sun or heat for very long. I miss out on a lot of family things. I'm tired of missing out.
How are you most likely to respond when someone offers you unsolicited advice about your lupus?