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!
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