I learned about Charles Bonnet Syndrome

Never Done: I learned about Charles Bonnet Syndrome

Charles Bonnet Syndrome is a condition that causes mentally healthy people with visual loss to have complex visual hallucinations, first described by Charles Bonnet in 1760, and first introduced into English-speaking psychiatry in 1982. (I took that description from Wikipedia. I kept in the part about the 222 year lag between discovery and publication because even though I don't know the circumstances, I find it sad to think about all the people who could have benefited from that information during that time.)

I know someone wonderful -- in fact, one the most mentally healthy people I have ever known -- who is experiencing something that seems like it might be CBS. It's been going on for a while (not 222 years) without knowing what was going on, and once they found out (from an Internet search) that there's an explanation for what's been happening -- an explanation that pretty clearly states that this is not about dementia -- they experienced a profound sense of relief. Again, I think about all those people between 1760 and 1982 who would have received great comfort from an explanation.

I also think about diagnosing in the age of the internet, and this article I read in Slate, in which a woman's Facebook friends helped to diagnose her son's rare and potentially fatal disease. And my own ventures into figuring out what might be wrong with me, and the ways in which my doctors have both respected and mocked my own research. Why isn't information more free-flowing? What possible ethical justifications can the be for withholding information? (I can think of plenty of non-ethical reasons and I'm sure you can too.) The truth is, I can think of ethical reasons as well, but I want to make it more of a practice to notice when I am doing it for selfish reasons and when I am doing it for the good of others. Because sometimes it's hard to see clearly enough -- even without complex visual hallucinations -- to do the right thing.