Aussie girl, thanks so much for this thread, along with the rest of you! I have been diagnosed with AS for 7 years now and have been through this "process" with my family. I tried to gently educate them but they're not really interested. I certainly push myself to the max when I'm feeling well, which is how I've always been anyway, so when I feel unwell my family and friends often don't understand. They think my uveitis is pink eye.
It took a few years for me just to be able and speak up if I need something. I always worried about appearing weak..now I realize that taking care of yourself is not weakness, but strength. My family has gotten better over time and I find myself spending more time with them than anyone after the last few years. My Dad can't really acknowledge my disease openly so I just don't discuss with him. I am past the anger at them and just have compassion for them and myself because I know we all have our issues because we are human.
It has not been as easy with my friendships and I've found this disease quite isolating. I am single, have been in and out of work, moved back to Atlanta to be near family, and feel that I have really lost friendships because I don't have the energy to keep up or they haven't had any interest in keeping up with me. I have a hard time planning outings because I never know how I'm going to be feeling on a given day. I have even been hesitant to write on these forums I am such an introvert. So here I am, thanks to you all. I am regrouping, starting a new job that I think will fit my needs, and hoping to find some new friends.
Aussie girl, I lived in Sydney for two years (before my AS was diagnosed)..I miss it everyday. Love Oz!
