Game changer

by Jillian Bogater (Exile From Hysteria)

When I think back five years to my laparoscopy surgery, and compare it to my experience today preparing for a hysterectomy … it’s obvious there’s one  big game changer: social media.

Without it I’d be a sniveling mess.

The support is instant. I can post a blog, Tweet, follow someone on Tumblr, and immediately receive feedback. I can put out a question, or fear, and within minutes hear from a handful of women who have gone through the exact same thing.

Whether sharing a similar procedure, or offering simple words of encouragement, these messages propel me.

Thinking back five years, I can’t believe the difference. While the internet obviously existed, and I could conduct basic research on my procedure, I had absolutely no one to talk to about this except my gynecologist. And she thought it was no big whoop. Being the melodramatic gal I am, I was convinced my exploratory laparoscopy was going to kill me. I sobbed, and begged my boyfriend to write me a love letter that I could bring with me into the hospital. The poor fella obliged.

I did have access to a now-defunct endometriosis-specific message board, but it was nothing compared to the instant companionship offered through various social media platforms. And now a new, comprehensive hysterectomy message board has come along that offers a true sense of belonging. HysterSisters offers space to women dealing with endometriosis, those who are pre-op, post-op, menopausal, etc. No matter where you are at on your journey, there’s a space for you and your story.

Luckily the icon for my blog (the knitted angry uterus) is pretty darn cute, and the ladies on Pinterest seem to love it. The icon may draw them in, but they stay for the … hey, someone just pinned me!

This project, this social media experiment, actually is not an experiment at all. It’s not about crunching numbers or collecting friends. These connections are about creating a community of my choosing for powerful, dynamic dialogue.

Facing a hysterectomy is a game changer in itself. Everything that I once thought was solid has shifted. My thoughts on family and children have radically changed. I am forced to confront my mortality, and prepare for enormous pain. I’d like to say I am a strong endo warrior, but these things terrify me.

But speaking with my endosisters on Twitter, Tumblr, message boards, WordPress … suddenly I know I am not alone. They will hold me up, and remain by my side throughout the entire process.

Some say social media is impersonal, but for me this is a whole new level of intimacy.