W
welshwitch
Guest
This is a huge issue for me and one of the main reasons I came to this site.
Growing up, I had nothing but negative feedback when someone found out about my CF (I say "found out" because my mom insisted on telling teachers, my friends' parents, coaches, etc.) As a young person, no one had ever given me any tools to educate people. Gradually I became more and more closeted about my CF. By high school, it was a deadly secret.
Some of my closest friends, who knew I had CF, started to talk about it with each other behind my back. (NOTE: they first started discussing it while high on mushrooms and this lead to them having a really bad trip!!! I hung around with deliquents in high school heh heh heh) I know now that it was just out of concern, but at the time I felt like a complete victim of gossip. The "news" spread around my peer group and only one of my friends had the guts to confront me about it. This is of course after she had done a ton of research about CF on her own at the library and got more and more scared. She asked me if it was fatal.
At the time I said no. I was terrified and upset, barely able to handle the fact that everyone was gossiping about me, and now I had to try to comfort her and I told her that I would be fine and that those books didn't apply to me.
Long story short, I wish that there had been more resources available for young people about CF!!!!!! And I wish that I had been more educated myself about my condition. Then I could have told people about it myself and supplied them with accurate info.
Fast forward to the present: I regret not being more open about it, and many of my friends don't know about my condition. Many of my friends do. I really struggled telling my boss and boyfriend (years ago) because it was the first time I had done so. My boyfriend asked me if it was OK to tell his family about it. I said OK.
I think personal health info should be confidential information. However, I feel guilty that so much time has gone by and I've never really disclosed it to some of my friends (mostly college). I feel like once I am more comfortable with it myself then I can tell them in my own way, perhaps over a glass of wine one day when we're watching our kids play. "Did I ever tell you about my health issues?" But until that day comes, I choose to not rock the boat until something serious occurs, like I'm in the hospital or something.
I think you had every right to be upset about people knowing about your CF without your consent. It's your choice to reveal that side of yourself!
Growing up, I had nothing but negative feedback when someone found out about my CF (I say "found out" because my mom insisted on telling teachers, my friends' parents, coaches, etc.) As a young person, no one had ever given me any tools to educate people. Gradually I became more and more closeted about my CF. By high school, it was a deadly secret.
Some of my closest friends, who knew I had CF, started to talk about it with each other behind my back. (NOTE: they first started discussing it while high on mushrooms and this lead to them having a really bad trip!!! I hung around with deliquents in high school heh heh heh) I know now that it was just out of concern, but at the time I felt like a complete victim of gossip. The "news" spread around my peer group and only one of my friends had the guts to confront me about it. This is of course after she had done a ton of research about CF on her own at the library and got more and more scared. She asked me if it was fatal.
At the time I said no. I was terrified and upset, barely able to handle the fact that everyone was gossiping about me, and now I had to try to comfort her and I told her that I would be fine and that those books didn't apply to me.
Long story short, I wish that there had been more resources available for young people about CF!!!!!! And I wish that I had been more educated myself about my condition. Then I could have told people about it myself and supplied them with accurate info.
Fast forward to the present: I regret not being more open about it, and many of my friends don't know about my condition. Many of my friends do. I really struggled telling my boss and boyfriend (years ago) because it was the first time I had done so. My boyfriend asked me if it was OK to tell his family about it. I said OK.
I think personal health info should be confidential information. However, I feel guilty that so much time has gone by and I've never really disclosed it to some of my friends (mostly college). I feel like once I am more comfortable with it myself then I can tell them in my own way, perhaps over a glass of wine one day when we're watching our kids play. "Did I ever tell you about my health issues?" But until that day comes, I choose to not rock the boat until something serious occurs, like I'm in the hospital or something.
I think you had every right to be upset about people knowing about your CF without your consent. It's your choice to reveal that side of yourself!