In the eighteen years since diagnosis, I have never knowingly met anyone else with the condition, or interacted with them in any way. This despite studies indicating that it is one of the most common chromosome disorders, affecting as many as one in five-hundred males. In a town like mine, we might expect to encounter about twenty people with the condition. But no, I’ve never encountered anyone else with this diagnosis, not that it’s something you would typically publicise.
Indeed, the past few months have been the first time I have ever opened up about having the condition, and I still speak of it in very shrouded terms. I’m not going to tell you what it is called, its precise characteristics or the full range of effects. If I did name it, you would straight away google it, and would then be presented with a shitstorm of misinformation which would make what is already a humiliating diagnosis a crushing typhoon. I have learnt to carefully filter and select information, mostly relying on the National Library of Medicine, a US repository of research papers. The uninitiated wouldn’t know to.
Prior to recent writing, I have never spoken to anyone about it, except for my wife and a couple of healthcare professionals. I have never spoken of it with my parents, any of my siblings or any other family member. One acquaintance — an endocrinologist by profession — correctly guessed I had it based on a particular look I have, but then doubted his own assumptions based on an outdated and inaccurate phenotype. I recently spoke of it to a trusted friend and mentor — a scholarly religious type now undertaking mRNA research — but I have known him fourteen years at this point, indicating the level of trust I needed to build.
This disorder has an array of clinical manifestations, including cognitive delays and physical features. The cognitive delays have been of particular interest to me, for there was a running joke throughout my youth that I was always late. It turns out it wasn’t so much a joke, as an indication that something was wrong, but — ho, hum — we are where we are. All the signs were there, if only this condition had been more widely known in those days. Perhaps today’s youngsters would have more luck getting appropriate support.
Recent weeks have been the first time I have felt the urge to find people like me, in the hope of learning from their experiences and just, well, not feeling so completely isolated in dealing with its effects. At this stage of my life, these are now mostly psychological. Physical deficits have largely been addressed with a good Turkish diet and the curated mindset, “I just don’t give a flying duck anymore.”
But my mind is another matter: I am perpetually bothered by disjointed thoughts, a subpar intellect, short-term memory blackouts, brain fog, low confidence and a tendency to be easily distracted and bored, not to mention the never-ceasing blues and mood swings. In short, I’ve begun to feel that I need to seek support for these, even if it is merely the encouragement of peers, who have lived with similar experiences. Which brings me to that forum… Golden envelope please… “And the award for crappiest support forum goes to…”
There are a number of forums out there purportedly claiming to offer support to people with this diagnosis, but I immediately discounted this one on the basis of their intimidating, hostile and unsympathetic gatekeeper questions, one of which was for me a significant trigger. Faced with those questions, I simply cancelled my join request and walked away.
Here I am, finally mustering the courage to reach out for support nearly two decades after diagnosis, and the forum moderators think it’s important to thought-police what they describe as bigotry, but I just see as a trigger from relentless bullying in my youth. Given the impact of this condition on body image and particularly what we would consider typically masculine phenotypes, you might think that a support forum would be more sensitive in how they broach such issues.
But no, one’s thoughts and opinions on a personal issue, which may have been the direct cause of significant bullying throughout one’s youth at the hands of young people and adults alike, is presented as a barrier to admittance to the group. Thanks very much; as if dealing with the condition isn’t hard enough without self-appointed gatekeepers policing what constitutes belonging. To me, it sounds like they’re pushing a particular agenda — one which I’m personally indifferent about, but which is nevertheless entirely unhelpful to me in my quest for understanding. What or how I think is irrelevant to my pursuit of support.
Suffice to say, I decided not to follow up on joining that forum. There are others, more inclusive of the diversity of experience, which I am sure will provide more useful guidance. But if not, I will just continue doing as I have always done, supporting myself as best I can. I resist gatekeepers of orthodoxy in my spiritual life; so will I resist in this sphere too. I will always take the road less travelled. Nobody polices my thoughts.