The Secret Inside Me

A dear friend of mine wears a t-shirt that says it all: 

"1 in 2000 People are Intersex. 

Do you know any? 

Are you sure?" 

(c) 2011 Zollies-Spot. All rights Reserved.

Don't Judge Me: Learn Something From Me

We all have secrets. Secrets so deep that you may never tell a soul. Can you imagine blogging and telling the world about your deep dark secret? I'm coming out of my cave, my deep dark cavern to tell you that I am an intersex individual who was born with a difference in sexual development and many people out there in the world may think they don't know anyone like me; however, you may have a friend or relative like me, or may have met a person like me and you may not even know.

Intersexed individuals are like the lost tribe that has remained hidden in the wild jungles and people are just now learning about them. Or that rare plant or animal species that we never knew existed but has always been in existence. Oh, it hasn't been by choice that people like me aren't very public to the masses. It's just that, in the past, people like me have been stigmatized, marginalized, and made to feel as if we don't belong in the cog of the wheel of humanity:  their version of the binary "norm." But things, they are a-changin.

Here's a little information to try to enlighten those that have never heard the term, Intersex.

What is the definition of Intersex? The online explanation says:  "“Intersex” is a general term used for a variety of conditions in which a person is born with a reproductive or sexual anatomy that doesn’t seem to fit the typical definitions of female or male. For example, a person might be born appearing to be female on the outside, but having mostly male-typical anatomy on the inside..." 

For a full definition see http://www.isna.org/faq/what_is_intersex.

I'm not anyone special, except to my dear friends and family. Actually, I'm just like you. A person who lives in this world. Who loves and dreams and has hopes and aspirations just like you.  I am also not that different from you. If you are a woman reading this I want you to know that I am like you. I am feminine. I identify as a female. I was raised as a female and, like you, I have been called a "beautiful woman" at least one time in my life by a special someone. I AM LOVED.

The only thing that sets me apart from "normal" women is that I am intersexed.  What does that mean? Well, my genetic/DNA makeup is XY/male but even though I have male chromosomes my external genital development continued among the female lines at birth because the embryonic testes that developed inside of me, although they produced male hormones, were not able to continue along the lines of the male genital development. This syndrome is called Androgen Insensitivity Syndrome (AIS) which means that my fetal body tissue was insensitive to the male androgens I was producing.  Therefore, I developed physically as a female, by default. My exterior is ALL woman but because my body was confused I didn't develop reproductive organs. I cannot have children. The older literature regarding this syndrome used the stigmatizing term, "Testicular Feminizing Syndrome."

The medical community at the time never told me what was wrong with me, yet I was already 18 years old. Doctors told my parents not to say anything to me because I would become suicidal or go crazy. The doctors and geneticists were like gods to people of my parent's generation. So, like good parents and doctors of their time, I was instead told that I may die of cancer and that they had to remove my "ovaries" as soon as possible.  The problem with this is that what they were removing were not ovaries but undescended testes. I also did not have cancer.  I was a shy girl and I was stunned and never asked any questions.  I was just scared. Very scared. I did not find out the truth of my "syndrome" until the advent of the Internet in the 1990s. The world wide web provided me its font of information at a touch of a button.

My journalistic background also dove me into heavy research and I read everything I could read about this syndrome.  Then, I read my medical records. The enlightenment was cathartic in the sense that I was relieved to know the facts about me. The mystery and the guesswork was taken out of the equation. Of course, my freakish feelings were still a part of me because I was made to feel that way by lies and innuendo. My records termed me as a "male-pseudo hermaphrodite" and throughout my records I was referred to as the "affected male." Shocking? Yes. But I was also relieved that it was all laid out in front of me in black and white, in print. My research answered all of my questions. A doctor was not around to lie to me. A doctor was not around to stammer at me and not look me in the eye. Have you ever been at "rock-bottom" in your life? I have. But from that "rock-bottom" ignorance I emerged like the legendary Phoenix and like all of us, when we are thrown into the bowels of something unknown, I just dealt with it and became empowered by what I learned about myself.

The journey I have traveled has been filled with obstacles like anger, shame, and very very sad and inner feelings of not really belonging or even being able to identify with others' "womanhood." For example, the rites of passage every young pubescent girl experiences. I did not experience the explosion of changes of a young girl: the dreaded "period", the hair growth in places you weren't expecting, the acne, etc. 

I usually describe my genitals like this: I have a beautiful "blind-ending" vagina with labia and a nice little clitoris. What does a "blind-ending" vagina mean? Think of a pool table with pool pockets. My vagina is like a small pool pocket that does not lead anywhere. I was born with no reproductive organs like a cervix, uterus, fallopian tubes, etc. It's funny how I will go to a doctor's office and will be asked when I had my last period. I just honestly say, "I've never had a period." Then the questions begin, "What do you mean?" "Every woman has had a period!" That is when I can educate nurses or doctors if they are honest with me and admit they do not know what it means to be an intersex individual or about my AIS.

I can always tell when either they don't care or if they don't understand even when they do not admit they don't understand. Because the conversation usually goes like this:

Nurse: Are you on your period or when was your last period?

Me: I am an intersex individual. I have no reproductive organs.

Nurse: Ok, but when was your last period?

Me: I have no reproductive organs.

Nurse: Do you have children or have you ever been pregnant?

Me: I have no reproductive organs.

When this happens I begin to wonder and get worried. I will then explain very carefully my situation. I usually carry printouts of information and flyers explaining intersex conditions with information about support groups so that medical staff can have the information handy to offer parents or patients if they encounter any other intersex patients. I always authorize them to feel free to give people my contact information if any parents or intersex individuals would like to talk with me so that they don't feel so alone.

The journey to my discovery has been long. Very long. And this journey with its twists and varying crossroads has made me feel empowered enough to come out of my shell and inform and educate others. I am an advocate for people like me that haven't come out of their own cavern. I am their voice. There are others like me and we are banding together to be heard and to let others know that we are here living among you and that we DO belong to the human spectrum.

Note: Think of the term Differences of Sexual Development as the umbrella that covers many types of conditions like my AIS.  You can learn more about AIS or about other conditions like Swyers Syndrome, Congenital Adrenal Hyperplasia (CAH) and other differences via the world wide web or by following the links below. When you do learn more, I urge you to tell a friend what you learned so that they can tell their friends. After all, you may one day meet a person like me if you think you haven't already and you will be able to listen to their story with compassion and with respect and understanding.

For a continuation of this story, click this link for 

Part Two: Feeling Shame

http://zollies-spot.blogspot.com/2011/03/secret-inside-me-part-2-feeling-shame.html

"The bottomless pit of shame is a stifling tourniquet around any motivation or drive or creativity.

Shame is only good for writing sad poetry like a cutter slowly ticking away at your own flesh to feel something: even if it is only emptiness." The Secret Inside Me, Part 2: Feeling Shame

Resources and Websites:

1. Definition of Intersex via ISNA: http://www.isna.org/faq/what_is_intersex
2. AIS-DSD Support Group: http://www.aisdsd.org/
3. The Kinsey Institute: http://www.kinseyinstitute.org/
4. I recommend reading Alice Dreger's work. She has written "Intersex in the Age of Ethics" and "Handbook for Parents of Children with Disorders of Sex Development (DSD Consortium, 2006)" at http://alicedreger.com/books.html
5. Definition of Differences of Sex Development: http://en.wikipedia.org/wiki/Disorder_of_sexual_development
6. Article regarding differences of sexual development/intersex in Stanford medical magazine: http://stanmed.stanford.edu/2011spring/article4.html
   Gender X - 2011 SPRING - Stanford Medicine Magazine - Stanford University School of Medicine



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