I Never Went Through Puberty: Life As A Perpetual Adolescent

5 Being A "Loser" Can Have A Medical Cause

Puberty is kind to few of us, but at least there's a point where we come out the other end, the hormones having transformed us into some kind of functional adults. For Kevin, things kept getting worse. "I developed a pear-shaped figure, I was tall for my age, I had a stammer (still have)," he told us. "I was a big, clumsy kid who knocked things over, stumbled and fell, couldn't verbally articulate what I was thinking." But Kevin's condition was an actual medical one, not merely the result of being smote by the puberty gods. As a matter of fact, they hadn't even noticed him.

"I have Klinefelter Syndrome, which is a corruption of the chromosomes," he says. "A 'normal' male has 46 chromosomes and is XY, so that on paper, they're described as 46-XY. I have an extra X-chromosome, meaning that I'm 47-XXY ... when puberty arrives and all that testosterone is supposed to be released, for the Klinefelter boy, it doesn't happen, or happens only a little."

As a result, boys with Klinefelter syndrome tend to be less masculine-looking, with less body hair and more feminine figures, complete with (in about a third of cases) what is medically known as man boobs. They have lower libidos and are often sterile. They often have learning disabilities, or at least trouble articulating themselves and understanding others. They have motor skill difficulties, which makes them clumsy. They're less assertive, more prone to anxiety, more obedient, and more eager to please. In other words, a Jason Biggs character.

But that's not that weird, right? Well, that's part of the problem. You see, Kevin only found out he had Klinefelter syndrome two decades later, when he was 34, after a nasty side effect kind of forced the issue. (We'll get to that later.) That makes him an anomaly -- not that he found out so late in life, but that he found out at all.

It's hard to detect without prenatal genetic screening, which is not routinely performed, meaning that about two-thirds of those affected have no idea. And why would they? You probably know lots of chubby, underachieving, awkward dudes. What are the chances that some genetic issue is the culprit? Rather high, as it turns out. It affects as many as 1 in 400 male births. You're about 10 times likelier to have this condition than you are to get hit by a car.

4 It Makes Sexuality Super Confusing

Klinefelter syndrome is technically an intersex condition, with all its attendant gender/sexuality implications. In fact, Lili Elbe, subject of the 2015 Oscar-winning movie The Danish Girl, is now believed to have had Klinefelter syndrome. Kevin identifies as a heterosexual man, but for a long time, was all but asexual.

"I didn't feel any of the things a normal boy would feel with the onset of puberty," he says. "Because of that, I didn't really have a gender identity or any sort of sexuality. I wasn't attracted to girls, so the conclusion everyone jumped to was that I was gay, and no matter how hard I tried to deny that, the fact that I didn't have a girlfriend when all the others did 'proved' it to them. But I wasn't attracted to boys, either. I wasn't attracted to anything or anyone."

That means everything that's a nightmare for most teenagers, thanks to the incredibly unwelcome hormones waging psychological warfare on them, were a distinct kind of nightmare for Kevin, for the opposite reason. For example, Sex Ed was "a living hell" for him. "I was surrounded by boys packed to bursting with testosterone, for whom everything was sexualized and hilarious in that manner, and by girls who were giving the boys the come-on ... and there I was in the center of all that, unable to understand why I wasn't feeling any of these (as the teachers put it) 'perfectly normal' things. And because I didn't feel it, and I was shy and awkward and inarticulate, being told by the teacher to answer directly sex-related questions was a form of torture."

Even since Kevin began treatment and this whole "women" thing started to look cool, he's only ever had one relationship, and it didn't leave him with a great taste for the stuff. "It wasn't love, because I didn't know what that was supposed to look like," he says. "I just wanted to have sex with something that didn't resemble my right hand, and eventually she let me."

Not an auspicious beginning for anyone, but Kevin's inexperience sealed the relationship's doom. It turns out his people skills hadn't caught up with his dick. "I found myself watching her as she talked, trying to anticipate what the best response ought to be, monitoring her and calculating how best to present the expected emotional response," he says. "As a result, I was on tenterhooks throughout the relationship, and the stress and the fact that she knew I was faking interest and didn't understand why undermined us further ... We split up after a particularly nasty screaming match, and I've never dared try another relationship."

3 It Makes Every Area Of Life Difficult

For reasons that science does not totally understand, people with Klinefelter syndrome usually aren't great students, due to their language and learning difficulties. As Kevin less-kindly puts it, "I was officially thick, an unskilled dumbass to be relegated to manual laboring and dead-end jobs." But their physical condition makes them poor candidates for the jobs that are open to them. Again, imagine a movie about a Jason Biggs type forced to work on a crew with a bunch of walking caricatures of masculinity, complete with slapstick physical comedy -- except in real life, it isn't so funny.

"In the timber yard, I couldn't keep my mind on the job, and caused an accident when I rolled a stack of wooden planks weighing about a quarter of a ton off the end of a rolling conveyor to crash onto the ground and block the access road for the side-loader forklifts that were supposed to take it away," Kevin says. "I just could not concentrate on the job. It was the same story in the warehouse I went to next ... and so it went, crappy job after crappy job, always with the same problems."

It was easy enough to present himself as someone who could do the job, because people with Klinefelter syndrome tend to be on the tall side, but, "The bosses quickly learned that even if I was a big guy, I wasn't that strong, because I was mostly flab," Kevin says. "I was a physically slow worker, typically taking far longer than other people to do the same menial tasks. That lack of energy was directly related to the minimal production of testosterone."

And remember: At no point during all of this did he know he had a medical condition. He simply thought he sucked at everything. Faced with tasks he physically and mentally couldn't do, Kevin eventually started bullshitting. "I couldn't count because I couldn't hold figures in my head for more than a few seconds, and so, come stock-take time, I ended up making up counts that were based on wild guesses after numerous attempts to do it right," he says. "I cut corners in jobs because anything that required the exercise of brain power was too much effort. I had no energy for physical labor, and not much in the way of intellectual engagement, either."

That, combined with his habit of causing Rube Goldbergian catastrophes, meant that "I always seemed to be the first one out the door if they needed to lay anyone off." Eventually, and completely understandably at this point, "I had a nervous breakdown, and didn't work at all for two years," which is pretty much the only logical reaction to having no idea why you can't stop screwing up.

2 It Can Destroy You

Research suggests that, left untreated, people with Klinefelter syndrome can expect to live about five years less than other people. This is mainly due to their increased risk of cardiovascular problems and certain kinds of cancers (including of the breasts). Other health problems associated with Klinefelter syndrome are autoimmune disorders, osteoporosis, and tooth decay, because hey, why not.

Kevin experienced a rather more pressing complication of Klinefelter syndrome: testicular torsion caused by an undescended testicle. He twisted a nut.

"I was getting a nasty, twisting sensation in my left testicle that was accompanied by a feeling of burning and aching, as if I'd been kicked there," he says. Testicle-having readers, you might wanna sit down (but not too hard) for this: He didn't immediately go to the doctor, because, "At that point in time, I was shy and body-conscious to a paranoid degree, and the idea of dropping my trousers in front of a complete stranger was mortifying."

It took a few days of hanging out with a literal ball of pain before he summoned the courage to see a doctor, who "wrote up an appointment for me to visit the hospital for what turned out to be exploratory surgery," he says. "This involved cutting open my scrotum and examining the contents and taking samples." It also involved something called a "'scrotal support bandage,' which looks like a fishnet posing pouch or the worst beachwear in the world."

It turned out to be a relatively straightforward untangling job -- or at least, as straightforward as anything involving scrotal dissection can be. But it was the very definition of a blessing in disguise, because "a couple of weeks later, while still coping with the support bandage, the consultant endocrinologist sat me down and explained what he'd found," Kevin says. "He told me I had a very low sperm count and was basically sterile, and he named the condition for me, and that was the very first time I heard of Klinefelter syndrome."

1 Treatment Makes You Realize How Cheated You've Been

Once Kevin's stupid chromosomes were identified, he could embark on a long, messy journey of experimental and invasive gene therapy treatments. Kidding; all he needed was a shot. "The treatment for me is an injection of testosterone substitute called Sustenon that I get via a muscle-mass injection (in the buttocks) every three weeks," he says. The whole time, it could have been that easy.

He notes that it "has the side effect of making my piss smell like burnt matches," but it "was like having a whole new battery installed ... I went from being a slow, rather dull person to being a deal more incisive, bright, and talkative. I'm not saying that the injections magically created the energy, sharpened my brain, or conjured conversational ability out of nothing. Clearly, all of that was there, just waiting for a spark to power it up."

In visible terms alone, at the age of 34, Kevin head-on collided with puberty. "I started growing body hair," he says. "I'd had some already, but I went from having a smooth chest to tufty one. I have to shave my jaw every two or three days. Prior to the treatment, I could go nearly a week without needing to. Suddenly, all the manual labor induced physical responses in my body. My arms and legs became, if not muscular, then at least strong enough to carry me and to do things without me wanting to keel over. I'd had tiny, narrow arms that I could almost wrap one hand around before. Now I have muscles there. Physically, I'm still not much to look at -- still vaguely pear-shaped and with bum and thigh fat distribution -- but I feel totally different."

He felt so good, in fact, that "in a moment of pure 'What the hell?'" he decided to go back to school. "I've now got a first-class history degree, I'm a hobbyist writer, and I have friends who don't judge me on my physical appearance," he says. "I never would have done that without the Sustenon, and I did it on my own, with no coaching or pressure from outside ... I never would have had the confidence to do that, prior to treatment."

But there's a bittersweet edge to it, though -- what Kevin calls "its own little extra kick in the teeth" (you know, aside from the smelly pee). "Imagine growing up with learning difficulties, being labelled (and pitied) for being subnormal, and then getting better," he says. And not only that, but knowing you could have been better several decades ago, if only you'd known you even had a problem. "I suddenly realized what a hellish childhood I'd had, and that furthermore, no, nobody else felt like that. I'd grown up believing everyone felt sick and terrified and bloated and awkward in childhood, and that I just couldn't handle it for some reason. In short, I felt cheated out of my childhood."

The lesson? Don't let shame prevent you from seeking help, ever. You might not be a butt-shot away from fixing your whole life, but who knows?

Manna has a rich inner life which transcends hyperlinking, thank you very much, but also a Twitter.

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