Welcome to my XXY Blog. Some people say they don’t like what “Google” displays for information about XXY on the internet. Obviously those people never lived when there was no internet! From my perspective, the information on the internet is fantastic compared to the “no information at all” when I was first diagnosed in 1976!
My XXY story
The internet didn’t become a thing until 1994. Now the newly diagnosed have a treasure trove of information they can pluck from wherever they like, for whatever purposes they like. The newly diagnosed today are much better off than the newly diagnosed of my newly diagnosed days, and all those before me. Grizzle if you must, but frankly….. …… you know!
I was born the year before Jacobs and Strong first discovered the extra chromosome. At the time the rest of the world was searching for the incidence rate of XXY with consecutive live born studies of babies chromosomes, New Zealand’s population was too small for that kind of expensive research. Only countries like Australia, Canada, USA, Great Britain, Europe, and Japan had the population and resources to warrant that research. (It’s a pity the Australians didn’t think they could include New Zealand in their work, if they had I might have been diagnosed somewhat earlier?)
So that 1:500 to 1:1000 live male births figure was derived from that research, and anybody claiming anything different is going to have to produce the proof of their claims before I’ll believe it, which they should put with their claims so people don’t have to ask. Adding more rare sex chromosome disorders to the XXY disorder does not make XXY more common, but less common. Keep things separate I say.
I did have a great many problems educationally growing up, but I had no idea they were related to being XXY until 1993. Of course, “education” encompasses every aspect of life. I wasn’t just slow in the classroom, I was slow everywhere. The first people to realise there was a problem were, of course, my parents but their responses were not the greatest. Back then though children didn’t have educational difficulty, they had “little bastard disease” everything was planned by them for the purpose of pissing their parents off.
When I left school I got an apprenticeship as a Panel Beater, but even though I’d passed a couple of subjects at School Certificate, I had a major misunderstanding of Mathematics, I just didn’t understand Mathematics. So as it turns out there is a major component of Mathematics in Panel Beating, and I failed it. There was another Apprentice at the very same shop as me, and he was useless at Maths too, but he passed because he never did a single assignment himself. He had an older brother and father who were both Panel Beaters and they did the work he couldn’t for him. I had no such luck in my house. I had people who were certain if I just tried harder I’d get it, I just never did get it. I still don’t get it. Mathematics is a foreign language, it is a nightmare in a foreign language.
I didn’t immediately start the Apprenticeship when I left school, first I had to work out what I wanted to do. I thought Farming might be a good career, after all there are bugger all people working on each individual farm, that sounds ideal to me. But unfortunately being as skinny as a starving rake and having no musculature to speak of, wasn’t going to lend itself to a life of physical activity. Nobody was ever going to hire me. When I was at high school in England I was tested for Anorexia Nervosa because I was so skinny. Me protesting that I wasn’t happy being skinny and desperately wanted to put on more weight convinced more than 1 Psychiatrist that I genuinely wanted to be heavier. I was not starving myself, I was being starved by myself, as it turned out!
Males need testosterone to gain muscle weight and they need lots of testosterone, lots and lots over a long time. When you’re a teenager a year is a long time!
Maybe if I was living in New Zealand when I was suspected of having Anorexia things might have been different? I was skinny and pasty white coloured, and lots of people in England are pasty white coloured, I fitted in just fine there! So people, parents, stopped looking to see why I was so skinny. All the testosterone I was making was going into making my penis longer and making sure I could masturbate frequently, and making sure my height didn’t get excessive. I didn’t know about XXY back then, or KS, (any variety), I just knew I wasn’t heavy enough, wasn’t even closely looking like I might shave one day and people were noticing, just not noticing enough.