THE BLOG
06/09/2016 08:26 am ET Updated Jun 10, 2017

Being Intersex  --  More Than a Diagnosis

Catherine Graffam

Trigger warning for genitals, coercive surgery, depression, self harm and suicide

Identifying as intersex is a radical process. For a lot of us, there is an "aha!" moment when we discover the term for the first time, it usually involves connecting the dots between your body and an identity. It completely changed me; I felt that I had agency over my body for the first time in my life.

I remember sitting on the floor of my first apartment late at night, secretly researching the "deformity" that I had kept hidden throughout my life. I felt alone in my experiences, and almost never discussed what I had been through with anyone. It goes without saying that I was still very emotionally scarred from my traumatic medical history.

"I felt alone in my experiences, and almost never discussed what I had been through with anyone."

One click lead to another and I found myself reading The Intersex Roadshow, a blog by Cary Costello. The particular post I read pointed out the ways that society hides intersex identity from people who are designated male at birth and have intersex traits, and instead labels these bodies as "deformed" or merely "inadequate" rather than somewhere along the spectrum of sex. I could barely finish it, being met head on with ideas that shook the foundation of my identity. I began rapidly shuffling through my experiences and the ways I thought about myself.

Staring blankly at my laptop screen, I realized... shit, he was talking about me. "How could I have not known about this?" I kept asking myself.

In the following days I devoured as much information as possible on everything intersex related, making up for years spent in the dark. Once I started identifying as intersex I was able to begin the healing process. I no longer blamed myself for the way I was because I learned that there was nothing wrong with it. Instead, I was furious at the people who tried, and nearly succeeded to erase my differences with a scalpel and never provided me with alternatives after multiple surgeries.

"Once I started identifying as intersex I was able to begin the healing process. I no longer blamed myself for the way I was because I learned that there was nothing wrong with it."

Growing up I believed I must have a "normal" body or I will never be loved. Learning at a young age to turn away from anyone who got too close, fearing they would find out what a horrible abomination I really was. The fears were affirmed at the age of 12 when the first friend I told laughed in my face, called me a freak and felt obliged to spread this news around school. The years of emotional torture I suffered through because of the stigma towards intersex bodies could have been aided if someone would have just talked to me and provided support, or really had done basically anything. Even family watched me decline into a deep, suicidal depression because they were too ashamed to talk to me about this.

When intersex people are given a "diagnosis" we are often left with more questions than answers. Since the abolition of using "intersex" in medical contexts, it has become more difficult to destigmatize intersex traits. The new umbrella terminology, "Disorders of Sex Development" or DSD, makes it easier to pathologize and "treat" us since a disorder is generally considered something that should be fixed. This lands the doctors office faaaaar away from the access to a powerful identity and community.

"When intersex people are given a 'diagnosis' we are often left with more questions than answers."

Authoritative medical professionals with MDs and white coats also have incentive to remove the identity aspect of being intersex, and I believe that it is partly a ploy to keep intersex people, and their families vulnerable. The kind of vulnerable that handed me from my mother's arms to the surgeon's gloves, the kind of vulnerable that left my genitals a wasteland of scars, the kind of vulnerable that drove me to suicide and self harm, the kind of vulnerable that put me back on the operating table.

Surgeons can't make any money if there is nothing to operate on and pharmaceutical companies can't profit off of people who know they don't need hormonal therapy. It is also worth noting that these medical producers have been scrutinized by The UN Special Rapporteur on Torture and viewed as unethical and inhumane.

This is why I believe so strongly in intersex people determining the way we define our bodies, not medical professionals with their own interests in mind. We know our bodies best. We know we are not broken, we are beautiful.

You can follow me on twitter as well as check out my website. I also have a patreon that will help fund my writing, art, and other creative avenues.

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This post is part of HuffPost's Journey Beyond the Binary blog series, an editorial effort to bring diverse trans and gender non-conforming voices to the HuffPost Blog during and after Pride month. As the LGBTQIA community celebrates great strides forward this June, it's important to acknowledge the struggles still pertinent to trans and gender variant members of the community. Please email any pitches to beyondbinary@huffingtonpost.com