What do you want others to know about lupus?

I was diagnosed when I was 24 years old. I had been seeking medical help for multiple ailments I have for more then 10 years prior to being diagnosed You are your own best advocate. You know your body better then anybody!Keep asking your doctors question until you understand your diagnoses. Don't be intimidated-- it's your LIFE!

Why is lupus a cruel mystery to you?

I truly can't remember a time Lupus didn't impact my life. As a child I had to wear turtlenecks to go swimming because I was so sensitive to the sun. When I was so tired I didn't want to get out of bed, I was told I needed to eat more veggies. Teenage years had alot of complications too. I knew I didn't have the energy my friends did. If I did have the energy it seemed as though everything hurt. I would go to doctor to doctor and no-one had an answer. I truly started to think it was in my head. Finally my father did some research and found out two of my great-aunts had Lupus and died at early ages, i made a doctor's appointment and asked to be tested for Lupus. In a matter of a couple of blood tests, I was diagnosed. I wish I could say that's when it all got easier but it didn't. I never know when it's gonna be a good day or a bad day. Reactions to different medications can be just as limiting as lupus. In addition I have other autoimmune diseases that have other effects on a daily basis. There isn't enough room to mention what the impact on my family is!

Support this Voice