Some disadvantage

The chromosome disorder I have been bestowed doesn’t manifest itself as a critical condition, seriously detrimental to one’s day to day life, as we’d consider the likes of cystic fibrosis or spina bifida. In my opinion, the impact of my condition is mostly psychological.

To speak of its impact on my life, therefore, feels selfish. It has never been the cause of significant pain, or extended stays in hospital. Its primary effect is disadvantage: emotionally and socially, in education and employment, in finding a partner and raising a family. The fact it only causes disadvantage is probably why it is not widely surfaced in medical circles. The only health professional most people with that extra chromosome will see is the endocrinologist initially tasked with monitoring their serum levels.

Often its effects are so subtle that your family doctor, teachers and parents will diagnose it first as shyness and then laziness as the years pass by. In babies, the condition manifests in them often having weak muscles, slow motor development — taking longer than average to sit up, crawl and walk — and delays in speaking. All three of these symptoms were present in my earliest childhood. To this day, my family still reference these delays as a preface to the joke that I was always late.

In boys and teenagers, symptoms can include weak bones, the inability to develop muscles, delayed puberty, low energy levels, learning difficulties, a tendency to be extremely shy and sensitive, difficulty expressing feelings, problems understanding emotional signals and socialising with others. Again, all of these symptoms were present throughout my adolescence. However, most of these could easily be attributed to laziness, or downright weirdness — and so they were.

The weak bones and poor muscle development were a particular problem in physical education, leading to ritual humiliation at the hands of other boys and teachers alike. One of our sports teachers took a particular disliking to me as a result of the weakness of my body and would regularly lay into me for that, as if it was within my abilities to change. Like most of my teachers, he too diagnosed acute laziness which he felt was best addressed by regularly calling me out in front of all of my peers.

Low self-esteem and poor confidence is also often associated with the condition, but in my opinion, this is less likely to be a direct result of the chromosome abnormality itself than a consequence of the frustrations of the adults in our lives dealing with our persistent refusal to do anything. Having been diagnosed lazy by all of the adults in your life, this will then become the perpetual refrain which defines you and your life from here on. An approach hardly conducive to developing positive self-image.

The physical manifestations of the condition are significant, but they’re not critical or life-limiting. They don’t interfere with your ability to function normally, seriously hampering day-to-day life. They’re mostly impactful because they present as difference from all that is considered normal in a young man — often in the most humiliating way. If you don’t know what’s wrong with you, it’s a heavy burden to carry, because the best explanation those around you can offer is that it’s your fault because of something you did or did not do. Still, however psychologically burdensome, it’s not going to cause you serious physical harm.

In adulthood, the primary manifestation of the condition is infertility. Indeed, it is at this juncture of life that most men with the condition first learn of that extra chromosome. That’s usually a year into gynaecological investigations focussing solely on their partner’s fertility; consideration of the male part of the equation is seemingly always an afterthought. Usually, that devastating prognosis will be delivered matter-of-factly by an insensitive clinician with a caseload so large that they’ve forgotten how to show compassion or care. You can’t have children, there’s nothing we can do, get over it.

Unfortunately, by this stage, most men receiving that diagnosis are in their late twenties or early thirties. These are the lucky ones. Many others, still struggling with the symptoms of the condition, have not yet found a life partner and soulmate capable of embracing them just the way they are. But for those that do find out what’s wrong with them, it’s the beginning of a long journey of discovery, as all the experiences of their earlier life begin to make sense. For some, it’s also the start of the road towards some kind of recovery. While there’s no cure for the disorder, some of the problems associated with it can be treated.

For the adult, it’s too late for the speech and language therapy that could have helped them in childhood, or the educational and behavioural support that could have helped them at school. But they can now access interventions which will help address their low mood, self-esteem and energy levels, and avoid the onset of osteoporosis. As a result of a quarterly injection for the rest of their life — if they can bear to follow it up — they will gradually see their appearance normalise, their deficits in strength and stamina at last addressed.

In short, it’s an annoyance — at times in the most humiliating of terms — but it results in disadvantage at most. I know from personal experience that if I neglect treatment for a significant period of time, I can still function as well as could be expected. There is the low mood to contend with and that general lethargy, but there is no great impairment, interfering with daily life. You can exist relatively normally without intervention; you just have to learn to cope with what makes you different.

In my case, I feel fortunate to have had significant advantage in my youth with which to counteract the worst of that disadvantage. While my experience of private school was wholly negative, I must acknowledge that it probably enabled me to achieve greater success than would have been possible without it. Likewise, my upbringing in a strict, religious family most likely helped me avoid addictive coping mechanisms as a young man. The very high expectations of my family probably helped steer me away from abject failure. In all of this, I was clearly blessed, and for that I am very grateful.

In contemplating the impact of this chromosome disorder upon me, I must acknowledge that it could have been worse. There were difficult years in my late teens and early twenties, but nothing that was insurmountable. The biggest impact was emotional and psychological — and it still is. Though I don’t physically show it to those around me, I regularly feel like bursting into tears. But that is just my small burden. There is no physical pain, or life-long impairment, or invasive medical interventions. What I carry is merely what I am: the building blocks of my character and being, as decreed by the One in whose hand is my soul. Alhamdulilah in all circumstances.

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