Do you tell people you have this condition or not?
I go with the flow on it. Some I tell and many, I don't. Most people don't understand it any way. The only ones I ever told were my closest friends. Other people I know seemed to have heard about my condition through the grape vine.
I believe it's a judgement call. You pick and choose who you want to know.
gaahla,
I echo Ben...most people I tell, then others clearly don't want to hear, so I spare them. ;)
Louisa posted a great article that you may want to share with those closest to you.
http://www.avmsurvivors.org/forum/topics/if-you-feel-people-don-t-understand