Tag: Facebook Group

BPES Pride

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It’s summer time so, in addition to whatever summer might mean to you, that means it’s PRIDE SEASON! We can represent over here on BPESisters with our own slightly different type of pride. BPES pride that is! I am not on social media, but I am being a bit sneaky, living vicariously through my sister’s membership in the BPES Facebook group that she writes about here. This week she shared with me a picture of a young girl with BPES wearing a t-shirt she made to celebrate her BPES. I had to laugh! A few years ago when our brother found out that we had BPES, my sister mentions on other pages of the site how our mom was so upset. To turn her distress into something positive, I invented a secret family club to celebrate our condition. It was a “if life gives you lemons…” type approach mixed with my penchant for irony and sarcasm. Along with our club, I had BPES t-shirts made to celebrate our crew. I still think my mom has a secret dream that we all go to Disney World with matching family t-shirts. Maybe this was a subtle BPES nod to that fantasy. In any case, even though I am not even on Facebook, learning about other people in the community via my sister has actually been surprisingly validating. I am tickled that someone else with BPES was like f* it – I’m going to make a shirt celebrating my condition. Flaunt that BPES pride. Fantastic.

It’s a Group Thing

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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.  2.0