The hardest part about recent explorations of self, framed by a greater understanding of the effects of this chromosome disorder, is that I now doubt everything. By which I mean my understandings of past events, particularly those experienced in my youth. The condition I still cannot name and I don’t think I ever will, because to me it is a humiliating diagnosis. Not more humiliating than the lived experience, I suppose, but still it rests heavily on my soul.

I know what I experienced then, but I now doubt why. For all I know, what I thought was happening wasn’t happening at all. Perhaps I was derided for my appearance and voice alone, and not because of all the other reasons I long understood to be the cause. Or perhaps all these different factors really did coalesce and collide, smashing me to pieces. For sure, that’s how I felt at the end: totally obliterated.

Recently, I have been reading a PhD thesis on the significance of this diagnosis — apparently a common condition that is rarely diagnosed, and little understood by healthcare professionals, let alone the wider population. Reading of the lamentable ignorance of the former doesn’t really surprise me, for I have experienced that myself.

More interesting to me are the shared experiences of those diagnosed in later life. There are so many commonalities in experience, that it can make difficult reading. That awful feeling that there’s something wrong with you, compounded by the derision of all of your peers, from whom you feel socially isolated. I have to agree with the assessment of one of the contributors to the study: that experience was just crap. Actually, it was horrendous.

I don’t know whether it would be better to get a diagnosis in adolescence or later. On one hand, with an early diagnosis, you could at least access interventions and start to address deficits. By your late teens, it’s probably too late for learning support or speech therapies to make any difference, but at least you could begin to address problems with strength, muscle tone and body image. On the other hand, knowledge of the impact of the condition could have a detrimental impact on pursuing a future partner.

The latter is a really big question, but honestly, continuing to live with the condition undiagnosed and therefore untreated for another decade was such an utterly horrible experience. That meant continuing to deal with all the awkwardness and weirdness throughout a first degree, a masters degree and the early years of employment, when social interactions are so important. If you thought years eleven and twelve at school were bad, imagine being an undergraduate still dealing with all those issues. As we all know by now, I dealt with it by seeking refuge in the One, for that was my only recourse.

It’s true: this diagnosis has made me all that I am. The experience of growing up with it undiagnosed and therefore untreated was profound; it has affected my entire take on life. We could say this is a positive thing, in some sense. Perhaps it is a good thing for my wife and children that it has generally made me a kind man, angry outbursts excepted. Perhaps my wife considers it a good thing that I am generally a gentle man, unlikely to ever give her a black eye because dinner wasn’t ready on time, or for whatever other reason causes some men to act like ogres.

So, yes, we could say that there are positive aspects to living with this chromosome disorder. Undoubtedly, without these experiences, I would likely never have picked up the path I did in life. You have to be missing something to set out in search of that. You can’t seek to be fixed if you don’t know you’re broken. Even so, it’s not a condition I’d wish on anyone. If I had been able to access interventions as a child and teenager, I would have done. I would never wish to go through those experiences, all the more intense for over a decade from my mid-teens to my mid-twenties.

The only consolation I have is that I was sent a life raft towards the end of that period. I am so grateful for that. This was a difficult test. Without this companion at my side, I don’t know how I would have dealt with it. The more I learn, the more I understand who I am. Sometimes these understandings are difficult to come to terms with. Indeed, only now is it really all starting to make sense. Perhaps I am beginning to understand everything.

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