Hi everyone! My name is
Phoebe and I have CAIS. Androgen
Insensitivity Syndrome has had a profound impact on my life – both
physiologically and psychologically. So
it would be my pleasure to share my story, especially if by telling it has a
positive effect on another AISer’s personal journey.
This is my story….
I was a big baby. I weighed over 9 pounds and, apparently, I had a big head. Mum still teases me and calls me “boofhead”, but for a first child it must have been quite an ordeal for her. As I was born, a group of medical students, dragged away from their homes and hangouts for this late night delivery, gathered closer to inspect the child. My mother had rubella during her pregnancy and therefore they expected some form of handicap, such as deafness or blindness. However, these wannabe medics left the ward disappointed – no evident deformities. Little did any of us know then that there was a hidden secret... one that was not immediately evident in this newborn, boofhead baby girl.
I grew. As a toddler I had
a hernia… or at least they thought it was a hernia. During the operation, the doctor noticed that my gonads were
partially descended but didn’t twig. The
surgeon simply moved my “ovaries” to where they were meant to be.
It was until several years later, when my youngest sister underwent the
same procedure that they realised something was amiss.
At that time I was tested and found, along with my baby sis, to be XY. The diagnosis: Testicular Feminising Syndrome.
I remember the day that I was tested – I remember that my Grandma
bought me a stuffed toy, a leopard, as a special reward.
I loved it and still have it today.
Of course, I never knew why I was at the hospital, or why they had made
me sleepy. That wasn’t until much later.
When I was a kid, I showed both typical male and female behaviours.
I loved my toys and frequently engaged in role-playing fantasies, but I
was equally comfortable climbing trees, picking fights with the boys at school
and being loud and abrasive. I
think I told my Mum that if I’d had the choice I would have wanted to be a
boy, but today I’m not sure whether this is because I perceived boys at some
special advantage to girls. It’s
a man’s world, and I think I wanted to belong to the elite group.
I remember I did not want to be a Mummy nor have my own kids either.
I don’t know if these were my ideas or suggestions implanted by doctors
and parents, designed to soften the eventual blow.
“You won’t have periods.
You won’t have babies.”
I can’t remember exactly how I felt.
Mum followed up her announcement with platitudes about how lucky I was
not to have the messy nuisance of periods and that I could have babies by
adoption if I wanted to later on in life. Actually
it all seemed to make sense. It
seemed to fit. I was happy to know
something – anything. Now, at
least I had something that I could tell my friends – they were beginning to
wonder. However my Mum warned me
about telling anyone anything about it. My
parents had kept this a secret between themselves. Mum and Dad hadn’t told anyone.
This was something that shouldn’t be discussed with others – they
wouldn’t understand. So I should
keep it a secret too. Our little
secret.
I became a teenager and so began a terrible period of my life.
My gang of girls was experimenting sexually.
I had discovered masturbation and wanted the same thing as everyone else:
sex. But I was very, very confused.
I had discovered I a disastrous tampon-inserting fiesta with my
girlfriends that my vaginal canal was very short. I freaked out. I
realised that I couldn’t have sex, that I couldn’t allow myself to get close
to another person. It was another
thing to differentiate me from everyone else.
And I still didn’t understand “why?”
Why was I so different? Why
was my body different? Why wasn’t
I like the others? At age 14 I was
spiraling. I was deeply depressed.
I lost all interest in school. Often
I spent the entire day in the school toilet block.
I fell out with all of my friends. I
cried myself to sleep most nights. I
hated my mother. I hated everyone. I thought constantly about suicide, about death.
I thought dying would be the coolest revenge.
Somehow I survived. I
remember that at the end of the year I wasn’t talking to Mum at all.
Mum was packing me off to my grandparents for the Christmas holidays when
I started a huge fight with my mother. I
screamed my lungs out at her – it must have been what I needed.
We both broke down crying and hugged each other.
For some reason, I started to feel better.
My senior years at high school were great. I developed my own awareness of my sense of humour and unique
qualities. I was actually better at
many things than my peers. I loved
hearing, “wow you’re so creative” and other such compliments.
It filled a void. It gave me a sense of worth and purpose that I think everyone
needs and just made everything different. With
my self-confidence buoyed, I developed meaningful relationships with friends and
family. I’m glad that not all of
my teenage years were so fucked up.
At the end of high school, after all the exams and parties Mum thought
it was time to let me know everything (notice I say Mum all the time –
I think Dad must have been totally out of his depth). When Mum drove me down to the beach I had no idea what she
was about to tell me. I could see
she was tense and was about to unburden herself. I was deeply curious but also afraid. She started off by reminding me that I couldn’t have
children, blah blah, yeah I know all that.
Then she started to tell me “why”.
I was amazed. It all became
clear. I’m XY but testosterone
has never had any effect on my body, so I naturally developed as feminine…
with a few exceptions. It was such
a relief just to know “why”. To
give it a name. But I was angry:
why did she wait for so long? Didn’t
she know I was in pain all these years? Mum
said she wanted to wait until I had done high school Biology so that I would
really understand. I could have
laughed. In my opinion, it was so
clear that anyone could understand. But
I forgave Mum immediately ‘cause I could see that it was painful for her too.
I also found out that I’m not alone.
My baby sis and three of my mother’s sisters all have TFS (we didn’t
know that we could call it AIS then). My
mother told me how her mother (my grandmother) let my aunts know of their
condition. Basically, she didn’t.
She sent them to the local Catholic priest, who told these young girls
that God had decided that they’d never have babies and, therefore, should
never be married. And they never
have.
Mum also talked to me about surgery to remove my testes (Shit!
It’s weird to realise that’s just what they were).
The operation was scheduled for January… just before the start of my
first year at university. So I said
OK, and the next thing I knew I was on the slab, up for an orchidectomy and
vaginoplasty. I got the
orchidectomy but they decided not to do the vaginoplasty at the 12th
hour. They thought I might have enough length for manual dilation.
(I’m so happy now that they didn’t go through with this procedure.
They were going to use a length of my bowel to create a vaginal canal –
this is probably the most invasive method of vaginoplasty.
The doctors never even discussed any options with me.)
So there I was 17, on hormone replacement therapy, now living by myself
in the big city away from my small town family and friends, first year
university student. The follow up
visits to the Brisbane Children’s Hospital were an ordeal.
I felt like an object or some kind of medical curiosity for Interns ogle.
For some reason they changed my hormonal dose – apparently to fuse the
bones and cap my growth and height. Before
I knew it I eaten one too many cream bun and had put on 10kg.
People started referring to me as “fat”.
My self-esteem plummeted and soon I was depressed again.
Except this time I really was very, very alone.
I started seeing someone that was more than happy to keep me down – my
first sexual relationship. I was
doing a lot of recreational drugs. I
was sure that I was going crazy or bi-polar, like some of my other family
members. It’s hard to write about
this period because basically it felt like I was only just surviving.
So how did I survive? I
don’t know. I just got my shit
together. I forgot about the
doctors and just took my daily dose of estrogen.
I (finally) ended the unhealthy relationship and started a healthy one.
I stopped damaging my body and started to live with respect for myself.
And pretty soon I was happy (actually it takes a lot in first place to be
unhappy, ‘cause I think I’ve always been a naturally upbeat person).
It’s been nearly ten years since my orchidectomy.
These days I have gone back to my doctors to sort out my HRT and stop my
bones from crumbling (I am just above the cut off for “osteoperotic”).
I am contented about who I and what I look like.
I love and celebrate my difference.
My difference has made me what I am and it’s gotten me to where I am
today. And I like where I am today.
I am brave, vigilant and I don't think I deserve to be jerked around
(this could just be maturity kicking in though).
I believe my experiences have made me a more compassionate and vital (and
fun) person.
Good luck fellow AISers in getting everything you want out of life. Remember there are others who are more than happy to lend a helping hand. Be strong and shine on.
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