Two hands holding in the middle of a rain shower.

Endometriosis Awareness: Why "That Sucks" Is Exactly What I Needed To Hear

We have to talk about endometriosis. Awareness is the key to finding better treatment for a debilitating, chronic disease with no cure. That’s why I write about endo and bring it up with every doctor I see, including my chiropractor and my dentist.

But in my personal life, I don't really like discussing endo. Most people don’t know what it is. And sometimes I just don’t want to explain it. That’s because when I do, I often get a blank stare. Or people think I’m on my deathbed. And those few who do recognize the condition — either they know someone who has it or they’ve heard Lena Dunham talk about it a lot — usually give me the dreaded side head tilt with an, “Aww, I’m sorry”.

I appreciate their sympathy. But most of the time, I actually end up trying to make them feel better about my condition.

But the other day, a new period-having friend reacted in a surprising way. Endo naturally came up because we were talking about our menstrual cycles and exercise. I mentioned that endo makes it tough to work out the week before my period. And in the same breath, I asked if they knew what endo was.

And all they said was, “Yes. And that sucks.” Here’s why their response was so perfect.

First, they didn’t let me brush it off

Like a lot of endo warriors, I try to act casual about endo. I breeze past the fact that for about two weeks a month I am very tired and achey. And maybe I have a little too much in common with my 78-year-old stepdad with sciatica. But it’s NBD. I can handle it.

My actual response this time was: meh.

But my new friend actually made me take a moment to recognize my endo. And when I did, I said, “You’re right. It does suck.” It felt great to say it out loud.

Validation without the pity

I get angry when people dismiss endo or say it’s just a bad period. This reaction tends to make me feel like I’m overreacting. And I know I'm not. But before my diagnosis — which took almost a decade to get — I heard the term hypochondriac a lot. From doctors to family members, everyone assured me I did not feel as bad as I said I did.

But I also don’t like seeing my reflection through the eyes of someone who feels sorry for me; That’s what the head tilt feels like.

It was confirming to hear a strong assertion like "that sucks". Especially because there was no “aww” involved.

It can be hard to say the right thing

The first time I bring up endo with someone, it can be tough for them to know what to say. Striking the right balance is usually something only my chronic illness buddies can do. But I know most people mean well. And some even ask me how they can find out more. So to help my community learn, I'll keep talking about it. And I hope you will too.

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