View Full Version : Sharing the diagnosis

02-15-2009, 11:17 AM
Having a hard time explaining the antiphospholipid syndrome and autoimmune disease stuff to friends. Nobody has ever heard of lupus really, nevermind APS!

How have you all begun to share?

I just told the guy I have been dating last night. He has no clue what it is....... Maybe that is a good thing, I don't know, it isn't a serious relationship but maybe someday it could be....

I guess I want to downplay the sickness part of it, and focus on the fact that I can live a good life despite this crap.

02-15-2009, 12:13 PM
I can feel for you in that situation! I had to tell Tim at one point and he wasn't quite sure what it was. I tried to tell him that when you have an autoimmune disease our immune system is very active,so active that it tends to turn on itself. It can attach us in different ways through our muscles and bones and even our organs like our skin, kidneys and hearts. For the next week he researched everything he could and made his own conclusion about it and what needed to be done. It is a struggle I fight with everyday. I worry about him so much and how he is doing with all of it. I will down play things when I feel yucky but somehow he always knows:) Just be honest and patient and time will tell!