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One day, I realise, I may have to become an advocate for others bestowed with this condition. To do so, I know that I will have to give it a name: to own it. To do that, I will have to rise above the stigma associated with it, to be unfazed by negative and embarrassing portrayals of its manifestations.

Perhaps in this I already have a blueprint to follow, mindful of those confident in their profession of faith despite its overwhelmingly negative portrayal across society, or those advocating for the disenfranchised, or those who despite facing unrelenting racism nevertheless strive their utmost to bring about positive change all around.

For my part, I admit that I didn’t really understand the true impact of this disorder until about fourteen months ago, when I started reading academic papers on the topic. Prior to that, I treated it purely as an endocrine matter that I would be wise to address, but in reality largely ignored.

In the years since diagnosis, I have actually been very inconsistent in following up on treatment, often going long periods — multiple months and even years — without having that all-important injection. I suppose it’s no surprise then that I have suffered from such low mood and lethargy for so many years, which consequentially impacts quality of life.

Despite every reason to do so, I did not link early delays, language difficulties, memory problems or my foggy mind to this condition. Only in recent months have I begun to have a self-awareness regarding so many of my traits and habits, and felt motivated to attempt to address them. For twenty-five years, I have been attempting to address them as spiritual maladies alone.

It may seem strange that despite working in a field supporting healthcare professions in communicating interventions in mental and physical health, until a few months ago I never once considered accessing those interventions myself. It took a year of reflecting deeply on all that led me to this point for me to understand what actions I now need to take.

So step one: understand the actual impact of that extra chromosome and associated deficiencies on my life, past and present. Step two: access appropriate interventions to overcome those impacts. Step three: arrive at some kind of relative normalcy.

From here, perhaps, we begin to move forward. So step four: become an advocate for others at the beginning of this road, yet to come to terms with its effects and what they now need to do to live productive lives. To emphasise the importance of treatments in regards to so many areas of life, from bone health to general mood, to self-confidence affecting career progression, to relationships with others.

One day, I now realise, I will need to stand up and be counted. To be an advocate for others severely tested by such trials. One day, perhaps, when I consider myself well enough fixed.