By Amy Phillips Penn

I reunited with my cousin Janet on Facebook some years ago.

We’re first cousins once removed, or so I think. Her mother and my father were first cousins, so take it from there.

She wrote in Facebook message to me: “My life has been an interesting hell. Isn’t everyone’s?”

Janet added a link of a BBC documentary: “The Truth of My Sex.”

There it was: the best kept secret in the family.

Janet was born at Mt. Sinai Hospital with “ambiguous genitalia.” It was determined that she had C.A.H. (Congenital Adrenal Hyperplasia), a medical condition with a side effect of producing too much androgen. She was reproductively female, but her genitals were not typically feminine. The doctors told her parents that she was unique.

Our family talks about each other nonstop. Perhaps all families are like that, I don’t know.

The only story I had ever heard about Janet was repeated to me ad nauseam for at least a week.

Janet, then a child, was visiting the company shirt factory.

She saw a machine and thought it was a soda haven, pushed a button and shut down the entire factory. A nice Homer Simpson kind of story, if it were only a cartoon.

Meanwhile, the major story was suffocated.

“My grandfather thought it would be better if I died,” said Janet.”He was a doctor.”

Her parents conferred with doctors; and Janet went through several surgeries.

No one told her what was going on.

Janet soldiered on.

“If you hear any of the children in there crying, it isn’t me,” she told her parents, as she went in for surgery.

While her parents were surprised and clueless about the possibility that children were born sexually ambiguous, her mother knew that her clitoris was something that Janet would want to keep.

“I knew I was attracted to girls since I was five” says Janet.

Janet has been married twice, and has produced two beautiful and wonderful children.

Heterosexual sex was painful for her, but she wanted to make her marriages work.

After the marriages ended, she acknowledged that she was gay and is now in a fulfilling relationship.

“I always knew that something was wrong, that I was different. If I talked to my parents about it they said that I was fine. I knew I wasn’t and felt ashamed, as if somehow it was my fault.”

When she was forty, she went in search of her birth records. The words “Pseudo Hermaphrodite” overrode anything that she might have imagined.

After learning all that she could about her birth circumstances, Janet felt a kind of relief that comes with finally understanding what has been going on and how it has sculpted your sense of self.

She shared with her mother what she knew, and her mother again reassured her that she was fine.

“Can you imagine what my mother went through with this? I was born in the Fifties and an abnormality was hush-hush, a detriment to assimilating into a life of acceptance. My mother didn’t even tell her best friend of fifty years about my differences and my father was not comfortable talking about genitals, especially his daughter’s.”

“We all felt isolated and ashamed.”

Once Janet had come to terms with the truth, she stopped hiding it.

She is now an advocate for all people that are born Intersex/DSD (Disorders of Sex Development) and works so that the next generation will not be ashamed, suicidal or isolated.

“That wonderful moment when you are falling in love should be bliss. It wasn’t for me, as I undressed. I felt the shame of my body.

Now I know that someone doesn’t fall in love with your genitals, they fall in love with you.”

And fall in love, we have.


Featured image courtesy of New York Natives

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