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.