do you tell your family and friends about your chiari?
if yes how do you tell them?
so far I have been keeping it very private but depending on what the ns says in sept.
What I have noticed with many of my friends, is that they are concerned about asking because they do not know if I am okay to talk about it.
I am very willing to talk about it because I feel Chiari Malformation needs all the help it can get about getting the word out. I am very open about what I have and then they usually will ask what Chiari is exactly and I'll answer. Typically one thing leads to another and other questions area asked. '
With this diagnosis, I believe part of my purpose in this life is to help spread the word about Chiari Malformation.
Right now, I'm in the learning stage of finding out as much as I can. My dad & brother have the same links I do & my boss has been told that we have a dx but not the details of it. The rest of everyone is still in the dark; mostly because I still haven't wrapped my head around the whole "surgery is the only fix" deal yet. It's a personal choice. If you are comfortable with talking about it...do it & I suppose it's a comprehensive choice, depending on the audience. Not much help, I'm afraid, but I do wish you luck!