The thing is NOT everyone has a good experience in telling others about their CF. Some have ok experiences, some have good experiences and some have awful experiences. Mark, for example, had a number of bad experiences when he told people about his CF back in elementary and again in JR high.
Such bad experiences that aside from our family, only 5 of his friends know and 3 of my friends, and his grandparents and parents church (which is pretty much people we never encounter).
He's not embarassed about it, although I've mis-spoken before and said, "he's quite about it, he's embarassed....". it's not htat he's embarased, it's that he DOES NOT want to be treated differently. And in all his experiences, he's been treated differently when he's told acquaintances. Close friends (like his 5, and my 3) are a tad different.
I think your daughter has every right to her privacy, she has every right to be upset, you have every right to be upset and I think you should take action to make sure this #1. doesnt' happen again and #2. doesn't happen to another child.
Mark told me about his CF before we started dating, we were good friends but were fastly falling for eachother and knew we wanted a relationship, but weren't sure where to go from friendship. So, before we became an official couple, he told me about it. I wasn't freaked out, I asked him a bit about it (which seemed hard for him to share) and he advised me NOT to trust everything I read and they make it sound a lot worse than it really is in most situations. And to ask him if I had questions about something I read, to please not just assume that what the internet or a book or even a doctor said, was exactly true for his situation. it wasn't easy for him, but he told me when he felt I needed to know.
Such bad experiences that aside from our family, only 5 of his friends know and 3 of my friends, and his grandparents and parents church (which is pretty much people we never encounter).
He's not embarassed about it, although I've mis-spoken before and said, "he's quite about it, he's embarassed....". it's not htat he's embarased, it's that he DOES NOT want to be treated differently. And in all his experiences, he's been treated differently when he's told acquaintances. Close friends (like his 5, and my 3) are a tad different.
I think your daughter has every right to her privacy, she has every right to be upset, you have every right to be upset and I think you should take action to make sure this #1. doesnt' happen again and #2. doesn't happen to another child.
Mark told me about his CF before we started dating, we were good friends but were fastly falling for eachother and knew we wanted a relationship, but weren't sure where to go from friendship. So, before we became an official couple, he told me about it. I wasn't freaked out, I asked him a bit about it (which seemed hard for him to share) and he advised me NOT to trust everything I read and they make it sound a lot worse than it really is in most situations. And to ask him if I had questions about something I read, to please not just assume that what the internet or a book or even a doctor said, was exactly true for his situation. it wasn't easy for him, but he told me when he felt I needed to know.
Fundraising and awareness are the root of my openness these days. Most recently I solicated my whole company to join my Great Strides team... at the very least I hope the majority will make a donation.