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In many studies investigating the experience of living with a chromosome variation, there are often common themes. While healthcare interventions focus nearly exclusively on endocrine issues, those living with condition are often more concerned with its psychosocial impacts.

Many, for example, recall struggles in education. Others focus on the challenges they encountered at diagnosis, their perceived negative interactions with healthcare providers and the limited information they feel they were provided with.

Beyond these shared perceptions, many seem to have had similar life experiences. They report having often felt socially isolated, recall difficulties in making friends, frequently remember having been victims of bullying, and having been misunderstood by others.

For me, while the stigma associated with infertility and perceptions of masculinity (or otherwise) is undeniable, the most noticeable aspect impacting me was language development, and all of the issues of self-confidence and sociability that arise by association.

Most of us are hidden in plain sight. Often we do have some recognisable traits that might be picked up by a specialist — or our peers in adolescence — but there is not that instant recognition as associated with some rarer but better known conditions.

Some might see signs in our face — that perpetual youth common in many of us, pre-intervention — or in our absent muscles, atypical fat distribution, or the length of limbs proportionate to our torso. All of this the awkward body image that weighs so heavily on our perception of self.

But generally speaking, all of these traits could just as easily be attributed to other factors. Perhaps we’re the fabled geek, somehow responsible for our own form. Or, as our PE teachers probably thought, weak due to our innate laziness on the sports field.

I suppose the experiences many of us report are a consequence of that lack of support, or of not knowing what was wrong with us. I look a bit different, but not that different. If you didn’t know, you wouldn’t know, just as I didn’t until that fateful day that changed everything.

So misunderstood without explanation. No doubt I misunderstood much through life, but the same could be said of others in respect to me. It’s incredible how so much can be impacted by something so infinitesimal: a variant piece of code in my genetic programme, capable of granting so many of us remarkably similar experiences.