When I was growing up, the Internet was just starting to become popular and Google and Facebook didn’t exist.  So I only ever saw people from my family that had eyes like mine.

Now, when I do a Google image search for “BPES,” it is weird to find a group of people who look like they could be related to me, but they aren’t.  I don’t really know how to describe it, but it is just surreal to stare at these faces of strangers who look like they should be family.

I recently realized that there are Facebook groups for people who have BPES.  When I search for “BPES,” two groups come up.  One has about 1,400 followers.  This surprised me.  All of the information that I have read about BPES says that its prevalence is unknown.  The group is larger than I expected.

You would think that I would automatically ask to join (it is a closed group), but I find myself hesitating.   I am a private person.  Even just doing this blog is a big deal.

There is also the fact that it is on Facebook, and they have had their privacy issues.  I know that doing a web site and a blog is very public, but on Facebook, anyone in the group could click on my name and see basic profile information.  I feel like anything I would post to that group could be amplified even further if people share it with their friends, not to mention what Facebook could do with the data.

I suppose I wouldn’t have to actually post anything.  I could just listen to others.  I’m not sure what is holding me back, or where my privacy paranoia is coming from, but I am going to keep thinking about it.  If I join, I will provide an update!