Hey all! I was just diagnosed with PCS about a week ago. I don't know yet if I have any other illnesses that usually tag along with PCS such as ulcerative colitis. Hopefully these answeres will come soon. I am starting this discussion because I feel that I would like to keep my health a private matter and a secret from my friends and family. I was wondering if there was anybody else on this site that is doing the same or has any comment or advice.
The people surrounding me have known I was sick for the last five months, but I didn't have a diagnosis yet. I couldn't have a conversation with anyone without first giving them a detailed update about my liver. (I call him Oliver... I'm a dork, I know. But in these situations you have to be a little silly) A lot of people didn't even ask me questions; they just expected me to give everybody a call after my biopsy, MRI, you name it, to update them. I'm a very independent person; I've been supporting myself since I was 16. I'm also an introvert. I'm really not interested in people's pity, and I also don't want the people that mean the world to me (my wonderful wonderful brothers) to be worried or feel bad for me. I understand that if I do die early from this (hoping for the best), then some people may be upset because they didn't know. But I would hope that they could understand that the best thing they could have given me was to let life go on normally.
I worry that I will struggle with this because I have a very hard time not being fully honest with the people I love most. The reason I love and trust these few is because they are willing to share their whole selves with me.