So I did it.  I joined the BPES Facebook group.  It was a closed group, and I had to answer questions to get in, but I was accepted.  So far, most of the posts have been parents posting about their kid’s surgeries, or new parents who just discovered their child has BPES.

I found it ironic because having BPES, I most likely can’t have kids, and it seemed like this whole feed was posts about kids.  I was glad to see as I was scrolling through that there was one post from a girl who looked like she was in her 20s.  She had dressed up and was going to an event and posted a picture.

As I was perusing the page, I also read through some of the comments, and everyone on the site is very supportive.  I was happy to see this, because I have no time in my life for negativity.  I was able to relate to comments about the eyes getting male attention, being mistaken as Asian, and not having to worry about as many wrinkles under the eyes.

I have mentioned this before, but it is simultaneously cool and weird to see people who look like me, but are not related to me.  So far I do not regret joining the group.  Even though there are almost 1500 people in it, there is only about 1 post every day or two, so it is not overwhelming my Facebook feed.

I am not sure if I will ever personally post something about myself, but so far I have enjoyed reading through other people’s posts.