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Healthcare literature often presents the effects of my chromosome disorder as being mild. As if to confirm this point, it will invariably go on to state that most men don’t even know they have it.

When I was diagnosed in my late twenties, it was presented as an endocrine condition alone. Low testosterone. Infertility. Mild, and not a big deal. Like many others, I accepted that framing because I didn’t know any differently.

Twenty years on, I see things much more clearly.

The truth is, the impact of this aneuploidy can be far-reaching. It touches more than just hormones.

It weaves its way through how we learn, how we process the world, how we relate to others. And how we relate to ourselves.

If you’ve grown up with a particular way of thinking, feeling, or struggling, it becomes your normal. You’re your own reference point. You assume that’s just how life is.

But regardless, the framing of what is widely known about the condition amongst healthcare professionals is often crass in itself.

Infertility is not a minor condition. It’s life-altering. It’s a profound reality that touches on masculinity, family, legacy. It affects identity, relationships, plans for the future.

Dismissing it as a side note because it’s not immediately visible does a huge disservice to those who live with it.

Yet despite all this, I suspect many healthcare professionals still operate under outdated assumptions that it is a mild hormonal quirk alone.

Who sees us navigating challenges like executive dysfunction, sensory processing differences, fatigue, anxiety, and social difficulties, often in isolation, mis- or un-diagnosed?

Who understands that it might affect cognition, emotional regulation, sensory experiences, or social connection? Only those of us who live with it, apparently, who eventually take the time to look deeper.

It’s taken me two decades to draw the threads together and to start to see myself. In this time, I’ve come to realise that the initial presentation of the disorder as an endocrine condition was only part of the picture.

We are our own primary reference point. If we’ve always processed the world a certain way, we don’t necessarily question that. We just assume that’s how life is.

The narrative that “most men don’t know they have it” is often framed as a kind of reassurance, as if it’s proof that the condition doesn’t matter very much.

But to me, it suggests the opposite: it means many people are living with challenges they’ve normalised, with no idea why certain things feel harder than they seem to be for others.

I now understand that this disorder can impact learning, sensory processing, executive function, emotional regulation, social interaction, communication, and much more.

But that broader view wasn’t part of the conversation when I was diagnosed twenty years ago. I had to piece it together myself, drawing on published research and new awareness

Naturally, I’m still learning here. But I do now know that this aneuploidy affects the whole person. The sooner we stop treating it as a footnote in endocrinology, the better.