Hi, my name is Graeme, I’m treated for Klinefelter’s syndrome.
It’s not quite like Alcoholics Anonymous, people develop that alcoholism disease by some means or other I’m not entirely sure of, and they never recover, ever, they are always alcoholics. So what would be the symptoms of that disease? Craving alcohol maybe? Drinking alcohol? Obviously I do not know.
I do know about low testosterone, much lower testosterone than the body needs to be healthy. That kind of low testosterone is called Hypogonadism, and because it’s the testes (balls, testicles, nuts, gonads, nads, boyz) that are directly affected, the type of hypogonadism is referred to as Hyper-gonad-tropic.
Hyper = OVER example – HYPERactive – Attention Deficit Hyperactivity Disorder.
Hypo = UNDER example – HYPOdermic NEEDLE goes UNDER the skin.
Get it? = Understand? = With me so far?
So why am I treated for Klinefelter’s syndrome? I don’t have any features of Klinefelter’s syndrome, not one! (That YOU can see)
Oh what does ‘syndrome’ mean?
One medical definition I read said “A collection of symptoms indicative of disease.” That’s how I know Klinefelter’s syndrome is the symptoms of something else, because that’s what SYNDROME means. So what is the ‘something else?’ The ‘something else’ is seminiferous tubule dysgenesis, that is a disease in the testes.
Just as aside, the reason Klinefelter’s syndrome ISN’T widely known about is because it’s all about SEX, every aspect of it is related to SEX. Parents with XXY boys have to learn to talk about SEX. It just goes with the territory, as they say.
So why am I treated for Klinefelter’s syndrome?
Because I estimate at about 14 I developed it, and didn’t know it. My testes atrophied, having initially grown, and I didn’t notice, nobody noticed. My best friends’ mother in London, where I went to High School, she noticed something was wrong, she even mentioned it how my best friend was 1 year younger than me and he was “covered in hair” and I had “no hair at all.” That woman did have 2 older sons and knew how boys normally developed, I’m the oldest son in my family. My parents had no idea, and neither did I, that I was not progressing through puberty properly.
I was very skinny. I had no musculature at all. When I was 14 or 15 I was evaluated for Anorexia Nervosa, but there was no medical examination, just a psychiatric evaluation. I weighed about 50kgs and I was 5’8″ tall. Because I was pissed off with people, parents in particular, mentioning my weight constantly, which annoyed me greatly, I was desperate to gain weight just to shut the bastards up! It was deemed from my attitude and protests that I did not have Anorexia Nervosa, and that I would gain weight in my own time.
The damn medical profession got something right for a change! When I was 4ish I’m told I was diagnosed with Petit Mal Epilepsy, and I distinctly remember taking medication for that, for years! It didn’t work, I’ve never had any type of Epilepsy. I did and do have AD/HD Inattentive Type. Look up the two, they’re so similar it’s not surprising to me they got the wrong one.
Years later after my diagnosis I found an article about Anorexia Nervosa in an XXY teenage boy. That was almost annoying to read, I could have been discovered back then, but wasn’t because there was no examination of my testes!
So back to High School in London. I was FORCED to play Rugby. I’m from New Zealand, everybody plays Rugby, right? Not right! I actually played football (soccer) when I was at Parkway Intermediate. I was hopeless at Rugby as I wan’t heavy enough to compete. Toothpicks can’t tackle! All through Fernlea School I played Rugby, for years, and I did not too bad. Not the best not the worst. I played a couple of times for the school in primary (junior) competitions, but when puberty arrived, (that I didn’t know about) that was the end of my Rugby career, and now I know why.
In the classroom I didn’t want to compete, or take part, or be there. So I wasn’t quite like all the other XXY boys I read about when they’re in primary (junior) school. I wasn’t a quiet shy type. I was a ‘I wanna get out of here’ type. Getting out of school was like a National pastime. I would do it every day if I could, and not be there. It was like ‘wow what am I here for?’ I didn’t understand anything of what was being taught most of the time. I’d lose track of the conversation so fast modern Formula1 race cars would be left in my wake! Primary school was a mysterious nightmare, or torture of the mind.
My poor old mum, (bitch), I “ruined her life” she said. Three children at school and her time to go back into the work force at least part time, and regularly she’s called to the school, to find me. I just never seemed to be where I was supposed to be, and I didn’t mind. I didn’t want to be there anyway. It’s not like it was enjoyable or fun, class time that is.
Play time was great, I liked play time, I was good at that. All the ball games, all the stick games, put a stick and ball together and I was good at that too. I was not physically uncoordinated that’s for sure, just concentration challenged! If receiving or delivering a ball took more than a few seconds, I’d have been screwed, but the beauty of ball games is when I’ve got it, the ball, it’s not ‘mine’ for all that long, and I can make a real quick decision to get rid of it, and did. Then all I had to do was make sure I was in the right place to get it back, and that I did too.
I wonder how I can relate to the reader what it was like for me at Primary school, when I was asked anything, and I was regularly asked things, explains things, anything, and I think the best way to do it is this:
I spent a lot of time thinking.
But I didn’t know I was thinking, I was just a blank. I’d disappear into somewhere, in my head. It’s hard to explain. Like if you went somewhere physically, (as I did many times), and got totally absorbed in a tiny little thing, and you pondered it deeply, more deeply than anything you’ve ever pondered in your life before, and just examined the finest intricate detail of just a single aspect of it, for hours. The entire world disappears and you’re at peace. If you can do that with your mind, with all the turmoil of a class room around, you’re clever, in my opinion. Is there another way to stay sane when surrounded with insanity?
So XXY boys who have LD’s are supposed to be these quiet shy types who say nothing to everybody, and sit in classrooms, and fade into nowhere, and learn nothing. That’s sort of similar I suppose to me, except the quiet shy bit. If someone managed to get to me in the class room everybody would know about it, I do not like being disturbed. Leave me in my day dream you bastards. I have no patience for people who want to annoy me. They can all fuck off! I do not need people to rely on, I never learned it, I don’t see why I should.
I used to ride my bike to school, sometimes I even managed to get there on time without diversions. I rode my bike everywhere, I was not suffering from hypogonadism before puberty. I had plenty of energy. I wasn’t taller than the other boys, I wasn’t the shortest either, I was about average once I got to about 8, before then I was one of the shortest.
Getting back to Rugby in High School, in London, when I was FORCED to play. In theory could have selected Football, I did select Football, and my selection was overturned by our Physical Education teacher. Nice guy, bald head, bastard! He wouldn’t let me change it back either, so I’d play MY style of Rugby, get rid of the ball as fast as possible, get into position to get it back and avoid having to tackle or be tackled at all costs, even the offside rules. Again I had plenty of energy, and nothing I did caused musculature to develop, or body hair to grow, or any signs of facial hair.
When I play Rugby I get dirty. Everybody does. I would have to play Rugby at other schools, and Council owned grounds, and all sorts of places like that, and thankfully they had hot showers. I didn’t give a damn about who saw me naked in the showers, I didn’t know I was terribly anything different to any other teenage boys who played Rugby. That Physical Education teacher I mentioned noticed something though. After one game and the shower afterward he stopped me as I was leaving to go home and said “Owing to your development you no longer have to play Rugby” I could have kissed him, whoopee!! I can retire from Rugby for good. It was only years later, after my diagnosis I thought about what he had said, as he drove me home, something that never happened before or since.
What had he seen?
That photograph above was taken at the 1972 Olympic Games in Munich, Germany. I was 5’8″ tall and weighed about 50Kgs. That picture is of a teenage boy with undiagnosed seminiferous tubule dysgenesis, the symptoms of which are called, “Klinefelter’s syndrome.”
These are the types of people who should be referred to has having Klinefelter’s syndrome, whether they like it or not. What you can’t see is what I think that Physical Education teacher saw, atrophied testes, and gynaecomastia. I didn’t like unfolding my arms as my chest would be more easily seen. Like everything else that happened when I was a child and teen, most of the time I had no idea how to ask questions or get help, or acknowledge that I needed either.
I can recall standing in that yellow ‘T’ shirt in front of a mirror thinking ‘this just doesn’t look right’ and then it’d go away, so I’d forget about it until I noticed it again. And it turns out that is how gynaecomastia behaves. Of course in more aware people who are concerned about how they look constantly, they might mention it? I just kept everything to myself, what was I supposed to say anyway? Got any ideas? Sex was not a topic of conversation in our house, nothing to do with sex was ever volunteered. I didn’t even know what puberty was, even when I was in it, at the start.
I recall a time where my sister was handed a book by our mother, quietly through the gap in the door between the hallway and the kitchen, when I wasn’t expected to be there, but then I did have a tendency to be where I wasn’t expected, and not be where I was. Since my sister and I are only just over 12 months apart in age we were inseparable, we even dressed the same, no I didn’t wear dresses, she wore shorts and ‘T’ shirt. I got plenty of photos of that.
So it was unusual for my sister to be given something and I not get it too. She played with my trucks, and fire engines, and radios, and I played with her dolls, plastic farm animals, and blocks, we shared everything. We always played together. We were always together. We slept in the same bed for years. My younger brother was supposed to share a room with me, but initially he slept on his own, in a room with two bunk beds. Then one day it all changed, about that time that book was handed over, in it’s secretive brown paper wrapper. Something was in it that I wanted to know, because my sister knew it. So I asked, this turned out to be the only question about sex I ever asked, and I didn’t know it, I asked “Can I see that?” And our mother said “When you’re older.” “Oh OK” I said, and I have never seen that particular book, so I guess I’m still not ‘older.’
The only benefit, looking back, of going to London was meeting Keith, if I’d not met him I don’t know when I’d have discovered what puberty was. I was well into studying Human Biology, but the subject of puberty wasn’t covered as by then everybody was virtually sexually mature, and sex education was all about human reproduction, how not to get pregnant, avoid STD’s, obtain prophylactics, that were technically illegal for under 18’s to acquire. Silly rules in England about sex, what fool thinks if condoms aren’t made available that teenage boys and girls won’t attempt to have sex?
Well of course they attempt to have sex. Even I did! I wouldn’t have if Keith wasn’t there though, he’d ‘set me up’ with girls for sex.
[Ohh complaint from the peanut gallery – do not be confused or deliberately ignorant, teenage girls want sex with teenage boys too, this is by no means a 1 way street. I just happened to be in a desirable position, Lord of the Manor, effectively. Edit added 26 May 2013]
I didn’t know how to meet girls for sex. There aren’t any lessons on that aspect of sex. I think he must have learned it from his 2 older brothers? I could provide a house, my parents were almost always out, they had important Diplomatic things to do, cocktail parties, dinners, wine and cheese evenings with foreign dignitaries, and occasionally they had one of those at their house, where I lived. Do you think I went to London for my health? Do you think it was my choice? Don’t be so silly. Anyway, making a house available for Keith’s idea of a party was easy, and my reward was sex. Sounded like a great deal to me.
So how big were my balls then? I didn’t have enough testosterone to grow facial hair, or enough to grow body hair, or enough to develop musculature, but I did have enough to have an erection, and be interested in sex. I did know my balls were particularly sensitive and needed very gentle care. But none of the girls mentioned them, if they were tiny, nobody noticed. I certainly didn’t. One time my sister’s boy friend flicked my balls with his finger tips, he thought it was funny, I can assure you it’s not. It’s bloody agonising. I knew he had a habit of doing that to other boys at school, but I thought as he was my sisters boyfriend I’d be safe. That turned out to be a wrong assumption. To him no boys’ balls were ‘protected.’
So however big they were they felt pain, they dangled on warm days, they were definitely present. I didn’t start getting tired after physical activity, like really tired, until after I stared working. Doing a ‘mans’ days work for a mans’ days pay’ as the Employment Officer said at my interview for my first full time job at General Motors, Trentham, Upper Hutt, New Zealand. When I had easily left school London, returned to New Zealand, done 6 months at Wainuiomata College, travelling to there and back by bus every day from Lower Hutt, leading my physically active, busy life. So it was a bit of a shock to suddenly not have the energy I used to have.
I was still very skinny, no musculature, and the arguments over my diet were ever present. I ate as much as I could eat, as much as I needed, I didn’t see any point in eating any more. I couldn’t eat any more. My mother would prepare meals that I was too tired to eat. I’d get back from work and crash. I just didn’t have any inclination to do anything. I was becoming more and more impotent, I’d still think about sex, and a partner is not needed to have sex, but an erection helps. It’s just plain depressing to not be able to have an erection, and at 17 it’s unusual, very! Without discussing anything with anybody at all I gave 1 weeks notice, the legally required notice, and left General Motors.
I got tired of waking up in Wellington, when I should have got off the train at Woburn. I had to pay the extra fare I didn’t intend to take, and another one back to Petone, or Lower Hutt. It wasn’t a lot of money, I could easily afford it, it was just bloody inconvenient. I knew Ford Motors were hiring, and I thought I’d get a job there, half an hour from where I lived. Was that a good thing or a bad thing? I suppose it was good, that was where I had my first ever full body physical examination, without my mother present. That’s when I was first suspected of Klinefelter’s syndrome, because of my total lack of musculature, no body hair, no facial hair, and small firm testes (balls), and an inability to have an erection. Oh yes people, good doctors want to know and examine EVERYTHING, and bad doctors don’t. There are more bad doctors than good doctors, from my experience.
And the rest as they say is HISTORY.