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When Someone Said My PCOS Really Wasn't a 'Big Deal'

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“You are pretty, are you sure you have PCOS?”

As I read it, I immediately was disappointed that I wasn’t complimented on something worth praise, like my wit, my advocacy or my sense of humor.

Then, I got angry – really irate.

“I’m sorry. What does PCOS ‘look’ like?”

Before I even looked up to the response, I started firing off thoughts this person needed to know.

Things like how common it is for people with polycystic ovarian syndrome (PCOS) to feel un-pretty because of the symptoms that steal things which are supposed to make them feel beautiful.

Or how sad it was to have such a narrow view of PCOS. I thought hard about supplying a long list of the million beautiful diverse humans I’ve met with PCOS who hop right over “pretty” into downright gorgeous, and it has far more to do with their soul than the body they’re in or a diagnosis they were given.

But instead I decided, “Let’s just hear them out. Maybe we can have an educational discussion.”

The response?

“PCOS doesn’t seem like a big deal. You cover it up well, always smiling — that’s all.”

Not a big deal? Aren’t we told this far too often? Aren’t we so often oversimplified?

“It’s just a weight issue.”

“I mean, just come back when you want a baby or hey, adopt!”

“If you just lost some weight this wouldn’t be an issue.”

It’s exhausting. Utterly, completely, devastatingly exhausting.

So this message is for anyone who’s thought polycystic ovarian syndrome isn’t a “big deal” or wants to see how un-pretty PCOS is.

PCOS causes acne so bad that I cancel plans because I’m too exhausted to try to cover it.

PCOS causes bloating so bad that I get referred to as “expecting” on the regular.

PCOS makes trying to have a baby feel like “work,” and makes relationships strained and loved ones feel far away.

PCOS makes my hair thin and fall out, and the stress of it all causes it to thin more.

PCOS triggers so many anxiety and panic attacks that my therapist has me on speed dial.

PCOS makes my body function at a level metabolically lower than other women’s, making me have to work 10 times harder.

PCOS is so chock-full of stigma that no one talks about it so we all tend to feel desperately alone.

PCOS is not a public health priority, so my doctors label me as “lazy,” and someone who needs to “just lose weight.” They ignore the other critical implementations it has on my life beyond my body mass index (BMI).

PCOS makes my life physically, mentally and emotionally un-pretty.

The only thing “pretty” about PCOS is that smile on my face, because PCOS sucks, but I try to manage it as best I can.

And I have to show others that for me, PCOS doesn’t define one thing about who I am, unless I let it.

PCOS is a big deal. So let’s start talking about it.

PCOS affects one in every 10 women. Why is this not talked about more?

To the women who are struggling, please know you are not alone. You are stronger than you know.

You are beautiful, beyond any person’s measure.

You are worthy of respect, understanding, proper care, education and resources.

You are not a failure because society has failed to recognize this battle.

You are brave for sharing your story, and it needs to be heard.

Originally published: May 28, 2020
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