Our Journey’s

A collection of life experiences of what it means to be XXY from the experts themselves. The central theme we hope you come away with is we are all individuals, and every XXY person has their own truth. Maybe some of what is said will resonate with you, and then perhaps none of it will. And that is OK. Please consider sharing your journey with us and please do not feel intimidated or inadequate for the task. We are here to help you realise your story and want to read what it means for you. We hope through reading the stories of people who contribute, you will open your mind to our diversity and realise there’s nothing to fear when a doctor says, you are XXY, your child is, or you are carrying an XXY fetus. 

Late Diagnosis

One experience that I remember (there are many) but the one main thing is not being believed by consultants – mainly orthopaedics – that there was something wrong with me. I was often told that it was impossible for me to have certain problems as they were more linked to women than men. They never bothered to check or read my notes – then they would have seen that my DNA or karyotype is 47XXY and that I carry an extra female chromosome. I was never believed and that pains me! I even went to see a psychiatrist off my own bat as I worked in a large hospital to put my mind at rest and was declared sane but my problems were of the body and not the mind.

Caught Between

It is only recently that I have discovered the term “Intersex” and how it relates to my body. I like this term because I prefer more choices than male or female, I think there’s a continuum of Male———-to———–Female just like shades of grey from black to white. It wasn’t until I was twenty-nine years old that a label was placed on my physical differences, differences I never quite understood. I had large nipples on smallish breasts, peanut sized testicles and cellulite type hairless fatty tissue over most of my body. I was told at a fertility clinic that I had an extra X chromosome and a Karyotype of 47XXY. I was informed that I was genetically sterile and that my sex glands produced only 10% of what was considered normal testosterone levels for a male. I was advised to immediately begin testosterone replacement therapy. I was told my libido would increase, I would gain weight and  my shoulders would broaden and that I would have to do this every two weeks for the rest of my life.

The Climb

Genetically speaking, my development as a human being was delayed, or perhaps better written, different than my peers. My body doesn’t produce testosterone. Now I know this is a very individualised point, which doesn’t effect and affect many human beings, so bear with me.I have a very vivid memory of sitting on the bathroom sink counter at my friend’s house watching him shave his peach fuzz and looking in the mirror at myself wondering why I didn’t have any? Now, this is the early ‘70’s, so we all had long hair a leftover cultural attribute from the sixties, and I looked way more like a girl than a boy. And it probably didn’t stand out too much to the world, but it sure stood out to me.

Watching, Waiting

I was given a karyotype test later in life of 47,XXY after undergoing fertility testing. I didn’t accept the original assessment of my having Klinefelter Syndrome which the doctor read aloud from a medical textbook describing symptoms of physical traits that didn’t resemble myself at all. I filed the original diagnosis medical report away at home and many years have passed since then.

I’ve been on anticoagulants since my mid-20s due to a series of medical issues of phlebitis and later a pulmonary embolism. I’ve had every test imaginable at the time to find the cause of my blood clotting and the doctors were stumped, saying I was a medical mystery to which prescribing anticoagulants for the rest of my life was the best solution to an unknown diagnosis.

One day out of curiosity, I was looking up intersex (a new word to me) as it resonated with me and that people who are XXY identify as intersex… I soon discovered that XXY people can have a wide spectrum of health concerns one of which is blood disorders. I decided to get myself retested to confirm that my karyotype was indeed 47,XXY. In December of 2017, it was reconfirmed by the Mayo Clinic Genomics Center in Rochester, MN that I was indeed 47,XXY.

Everything is Clearer Now

I was born 47XXY and diagnosed when I was 15 years old by a paediatrician whom I was seeing for the treatment of ADHD. Even before receiving a diagnosis I always knew I was different from my peers. Key moments of realisation of being different were around the onset of puberty or lack of puberty for that matter. During this time I felt confused about my sexuality and didn’t feel the same as other boys.

We Are One

Have you ever wondered what it would be like to be a mythical being? As a hermaphrodite, I exist in a culture that sees only males or females. Those of us who don’t fit into the rigid sex binary are left out of many of the protections offered to our cousins who more neatly fit the two categories. This leaves an enormous gap in cultural definitions and societal acceptance of my fundamental being.

My journey has three main threads: 1) My personal and often rocky self–development, as I have come to understand and accept what it means to be a hermaphrodite, and find others of my tribe; 2) recognizing the harm done by my medical treatment and actively seeking to change how the medical system treats hermaphrodites, starting from birth onwards; and 3) identifying what was done to me as a human rights violation.

Living With My Son – A True Adventure

With my son, I believe his essence is rooted in his genetic uniqueness. I truly believe that having an extra X chromosome gives him some real challenges but he continually faces these challenges with great resilience. He learned to recognize the impact of XXY and to use the attributes associated with the variance to his benefit.

Finding Me

When I was diagnosed, the Endocrinologist informed me ‘Testosterone would make me a man and bring meaning to my life”  naturally I jumped at the opportunity as all I had ever wanted was to fit in and I knew it was not something  I had ever experienced to that point. Being told I was sterile did not faze me in the slightest, not least because I still felt like a child myself albeit a 37-year-old one, and thus felt incapable of looking after a child when I was already struggling to look after myself. Without any counselling to gauge if Testosterone injections were right for me, they were initiated at 200mg every fortnight and within a matter of months, I had begun to feel very uncomfortable about what I was becoming. In place of “meaning” my phallus had overtaken my brain and the thoughts of sex and masturbation were constant consuming my every waking moment, my thoughts on sexuality firmly centred on me being a woman in a heterosexual relationship, I felt as though I was losing my mind.

Walk With Me

I have always considered myself highly atypical of Klinefelter’s. I hit puberty in the second half of the 4th grade. By the time I was in 7th grade, I was shaving weekly. Aside from a slight learning disability in Math, I have never had any learning deficits. In fact, I was reading on a University level in the 6th grade. I also grew up with and around music. I began by playing the Alto saxophone in the 3rd grade. In 4th grade, I switched to the Trumpet. In 5th grade, I began playing the piano, and by the end of 5th grade, I added guitar to my repertoire. The other instruments were a great base of technicality and musical theory, but the guitar really spoke to me. I played every day, for as many hours as I could. I would listen to records and learn all the guitar parts by ear. An ear that was previously trained by the other instruments!

You Are Not Alone

1997 changed the way I viewed my life; past, present and future. It put a name to 45 years of fears and embarrassment and to what I felt but could never tell anyone about. It was the year that I was diagnosed with Klinefelter’s Syndrome. The punchline was somewhat lost on me, however, as at the time I was undergoing hospital in-patient tests to discover the cause of acute pain and weakness in the quadriceps of both my legs. And with still no light on the latter problems, I certainly wasn’t expecting to be diagnosed with another medical condition. Some weeks later on leaving my first visit to the endocrine outpatient clinic, having just discovered that a huge chunk of my life had been affected by this condition, I asked a junior doctor if there was any printed information on Klinefelter’s Syndrome.

I’m A Man and A Woman

I had always been a sickly child, suffering more than my fair share of childhood ailments: asthma, chest infections and flu. Other kids called me a “weaky” because I was skinny and hopeless at sport. I hated rough-and-tumble boys’ games and preferred knitting, but I had no idea my feminine leanings were down to genetics.

Then, when I was 13, I collapsed while riding my bike. My immune system was run down and I underwent a series of tests. They diagnosed  Klinefelter’s Syndrome (47 XXY), which means I have three sex chromosomes, XXY, instead of the normal XY for a male, or XX for a female. The condition affects up to one in 1,000 boys – physically I’m male, but genetically I’m male and female.

The Hole In Me to the Whole of Me

I was born in 1983 and I grew up in Des Moines a small city in Iowa.   From the outside, I appeared to be a quiet young man, soft-spoken, artistic and shy.  From a young age, I had crushes on older boys and men.  When I was twelve I understood that when kids called someone a fag on the playground they were describing me.  I was a fag, I was gay.

I kept my secret the best I could, and admittedly not as well as those before me. When I was in eighth grade I took a bunch of pills from the medicine cabinet and tried to kill myself.   I was put under psychiatric care, not for the first time in my life.   I grew up in talk therapy starting when I was four years old.  I am not sure what behaviour I had that caused my mom to put me into therapy, but therapy continued my whole life up to my suicide attempt.  I had always felt anxious, depressed and alone but not sure as to the reason.

In A State of Perpetual Motion

If I stop and think, I look inwards and get depressed, and overwhelmed. All the things that need to be done just to maintain the status quo, not all the additional things to move ahead and get a sense of accomplishment One technique I used to employ and need to employ again, are mind maps.

Just the simple process of documenting where you are and where you need to be, with all the steps required to take you there allows one to park one’s thoughts and move on. Regardless of whether any can be knocked off, one can be assured that they won’t be forgotten. It is a way to move forward. In this way, our shared anxiety is being applied to help us rather than hinder us.

It’s really important for us to be grounded. To know what and where our happy place is.

If for whatever reason I hit a roadblock, I can stop, take a day off and envelope myself in a game, like Age of Empires- Conquerors Edition. Enveloping oneself in a game takes all our problems and issues in the world at large into the game-play. The only difference is while we can’t fix all these things without some sort of interaction (difficult for me), in game-play we can overcome challenges and gain confidence. It makes us feel better about ourselves, strengthens our resolve and prepares us better for real-world challenges.

It may be with your partner, with your pets, at your home, at school, or at work even, surrounded by supportive workmates. Wherever it is if you are brave and venture away from that happy place, you know how to get back, and how you can re-centre yourself. This type of thought process should eliminate overreaching anxiety or overwhelming and overreaching depression that can lead to the spiral of death (suicide)

In Memory

When I was in junior high and took gym, we all showered together. I didn’t notice, but all the other boys always teased me about how small my genitals were.  In gym class itself, I could not do as well as others at anything.  The teacher graded on a curve, so the lowest part of the curve was me.  I passed, but only because he didn’t want me back the next year.  I attended a boarding school in India for two years; the boys asked me about the personal parts in the shower there, but no one teased me.  All through my teen years, I had very little interest in girls or anyone for that matter.  Dances would come and go, without me.  Guys would have girlfriends, but I chose to ride around with my best buddy. When I was taking a physical for college, the doctor said my testicles were pretty small and wanted to know if they worked.. I said, as far as I know, they do. (this was in 1965)  But he had me go to Indiana University and go thru a battery of tests. Blood sample, Urine sample, Semen sample…  No one had an answer.

Being Intersex – A History – A State of Being

We were born with an extra X chromosome on the twenty-third pair. (How this happens is of little import save that the extra X comes from one or the other parent.) We are XXY. Our mother had had numerous, between five and 10, spontaneous abortions and miscarriages from ’29 on, and in 1939 was given diethylstilbesterol to prevent them. I was conceived in or around mid-September of that year and born normally in May of 1940. (Telling us of the losses she explained about DES when we were 13. Needless to say, her explanation meant nothing to us at the time, 1953. Our childhood was fraught with our slender sickliness. We were susceptible to infections, bronchitis, and at age five allergies to cat dander and walnuts. We were circumcised at three years of age. The physical trauma healed in six weeks along with German measles. The psychic trauma may never fade completely. (Doctors at the time assured parents that children up to five do not feel pain.)

Lost and Found

l grew up in a family on the wrong side of the tracks, we never had much to spare. I was the youngest of three. My brother is 5 years older and my sister is 18 months older. Life was hard, my father was in a lot of ways like a fourth child, and my mother was tough and long-suffering. My father had become mentally ill and suffered from multiple personality disorder. My mother worked two jobs just to keep the wolves from the door and we saw little of her from day to day. My father was in and out of hospitals (mental institutions) and in and out of work. I was always a sickly child and therefore demanding attention. My mother in the little time she had spent much time on a diagnostic odyssey with me and my ailments.

Like any boy, my older brother was a hero to me when I was little. I wanted to be like him, but while he was really good at sport, I was useless and could not kick a ball straight. I understand now why he did not want me around. He saw me as the annoying little brother who was just a shy gawky kid. School life was awful and I hated it. My school years were the worst time of my life. I just didn’t get it.

I am just an XXY/Intersex kind of guy.  It’s true.  I have a tee-shirt and photos to prove it.  I marched in the Pride parade.  I came out. Thus, it must be so.

So what is an XXY/Intersex kind of guy?   It’s a person that looks like a man.  Maybe a little taller than normal, maybe smaller hands than normal, maybe bad teeth, maybe a killer smile.  Truth is, so little research has been performed in America on us XXY types that very few folks even know we exist.  We do.  1 in every 500 male births is my genetic brother. I have something intimately in common with 1 in 500 males born anywhere in the world of any nationality, skin colour, gender identity or economic class

But.  apparently, as in every other small minority group that flies under the radar of folks’ awareness, nobody knows of our existence unless they are one of us, or related to one of us, or who marries one of us. As for me, I found out when I became concerned about a lump in my breast.  “It’s either you smoke too much weed, you have pituitary cancer, or it’s this new thing called Klinefelter’s Syndrome,” the doc said.  I was hoping it was too much weed instead of too little Testosterone.  But, it was nice knowing there was a name for my experience of being different.

Just an XXY/Intersex Kind of Guy