I, myself, was born with an intersexed condition called Complete Androgen Insensitivity Syndrome (CAIS). I have male (XY) chromosomes, but during prenatal development did not respond to androgens (male hormones) and instead developed female genitalia. I look like a normal woman, but do not have a uterus or ovaries. My parents found out I was intersexed because I had a hernia when I was about a month old from underdeveloped testicular tissue or gonads. The doctor repaired my hernia and left the gonads in place until my teen years.
My parents were as supportive as they could be under the
circumstances. They tried to prepare me for what was to come, and told me that
before my friends were going into puberty that I was not going to get my period
or be able to have children of my own, but I would also have to have a surgery.
I had the surgery to remove my gonads when I was 12 years old and started to
take estrogen hormone replacement therapy to ensure development as a woman
would successful. There was no education or counseling session with
professionals to tell me what was going on or why the surgery needed to take
place. I remember someone telling me in
high school I had XY chromosomes, but that did not make sense to me at that
time. fter the surgery was over, I spent several years knowing I was different
than the other girls, but not understanding why or questioning it.
Fear and anxiety about my difference built up over the years
because no one talked openly to me about it. I continued to see an endocrinologist
on a regular basis for check-ups and hormone replacement therapy, but it wasn’t
until my mid-twenties when my curiosity got the best of me. I went online and
searched for the diagnosis I saw in my medical charts “Complete Androgen
Insensitivity Syndrome”. I saw terms like “male chromosomes”, “testicular
feminization”, “hermaphrodite”, and rumored celebrities who were also born that
way. It was a huge shock to say the least! A positive thing about searching the
internet for CAIS was coming across a support group, where I learned I wasn’t
alone and eventually met other people born intersexed. I also started to have
open conversations with my parents about being born intersexed and how it has
affected my life.
Around my 30th birthday, I was reaching more than
one milestone. I had a feeling I was coasting through life not being my whole
self. I wanted to be more open and honest with my family and friends about whom
I was as a person. This secret also kept me from having a fulfilling dating and
sex life. I started to open up to my closest friends, educating them about how
I was born. I disclosed to my best friend over email, because I was too anxious
to do it over the phone. All of my friends responded positively, and wished
they would have known earlier so they could be there for me.
With this confidence, I decided to put myself out there in
the dating world with the help of online dating. I met this younger, athletic,
smart guy who then became my boyfriend. We spent several months getting to know
each other and I confided to him I wasn’t able to have children, and he
accepted that. Then one spectacular day,
while on vacation in LA, he proposed! After happily accepting his proposal,
there was a dread that crept up. I hadn’t disclosed to him about being
intersexed yet! A month went by before I told him the truth. He ingested the
information, and stuck around to say “I do”, and one day we will build our
family together through adoption.
Instead of feeling guilty about not telling my husband I am
intersexed before he proposed, I later realized I wasn’t ready to tell him and
am glad he accepted me for who I was after I did. Most people who are
intersexed have a fear of being rejected for telling the truth about who we
really are. The fear stems from the secrecy of our diagnosis, surgeries, and
sometimes even gender assignments! We are told that you can continue to live
your life as a “woman” with this condition if you have this surgery and take
these hormones, but you just won’t have your period or be able to have your own
babies. Like life will just play out that way and be fine?
But life is not that simple. As we have seen with the gay
rights movement, we cannot hide who we are because it will eventually come to
the surface. But our society wants to categorize gender into “male” or “female”
and not deal with the “other” category that already exists. Intersex is a
paradox some people have attempted to hide under the rug, and it has worked so
far. As a human being we deserve the right to live life as we are- without
being ashamed if we do not fit into the typical roles of society. The real
truth is if we have truth, compassion, support, and love in our lives we can
feel pretty damn good about ourselves.
My story is similar to many others who were born with
Complete Androgen Insensitive Syndrome. There also are several other diagnoses
besides CAIS that qualify as Intersex. And we have not always been treated well
in the past, especially from the medical community. I have heard personal
testimonies of people who were photographed nude, coaxed into surgeries, and assigned
a gender that did not fit who they were. Years past, the medical community
wanted to provide a quick fix and keep our lives under wraps, which is where
our invisibility began. Although it is progressively getting better, some of
these injustices are still occurring.
The future of the intersexed community is gaining strength,
and with that strength the confidence to be open with the world around us. I
have been blessed to join a network of support who is working on education,
advocacy, research, and awareness to the general public and medical community.
The AIS-DSD support group is focused on being a positive resource for
intersexed people, their families, and a broker with those who want to work
with us on research studies. We have made positive strides, but we still need
to work on prejudices such as people who are afraid of our differences,
unconformity, and even religious discussions about human evolution and how we
fit into religion.
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