The Ethical Divide
I know a lot about Chiari, but there is a lot more I don't know. If you want me to talk one on one with a parent whose child also has Chiari, I will absolutely share my experiences and what I've learned, maybe even share info about the doctors I've heard about. There is no expectation that the conversation should be taken as the gospel truth about the topic-just my interpretation of my own situation.
Where it becomes tricky is when someone else says "Hey, Suzanne is an expert on that", and urges Suzanne to have a meeting to tell others what to do. I can't-especially in my role as an educator. What has worked for me may not be the right thing for others. Add to that the fact that these people know the letters after my name and assume that what comes out of my mouth is based on theory and practice.
Where it becomes hard is that the other person says "but you know so much", and I have to say "no, I know my own experience", they then say "well, share your experience" and I have to say that ethics guide me to undertand that the last thing I should be doing is getting up in front of a crowd of people to talk about it. They see me in a different light.
I just hope that person didn't say anything to the person in need before I shut down the conversation about how many ways I am not an expert...