This brain fog is defeating me. It doesn’t help that I am ill and haven’t been sleeping well, but I’m not sure I can really blame either of those for the almost permanent lethargy which afflicts me. Looking upon myself at my inaction and disengagement, I can’t help but recall that this has been my …
I don’t know if the interventions really work. There is a peak, lasting for about six weeks during which I seem to be on top form. But by this stage, midway between injections, I seem to hit a slump and find myself back where I started, demotivated, disinterested, easily distracted. Of course, it’s difficult to …
It occurs to me that I have spent much of the past two decades removing myself from what I would consider potentially judgemental environments. I am rarely found amidst crowds and will generally shun gatherings of any but my most trusted companions. While I have had occasional forays into group learning settings, my overriding habit …
I had forgotten exactly when I was diagnosed. Yesterday I found out it was twenty-years ago this summer. So I was twenty-six, two years married. Though I misremembered the timing, I’ll never forget that appointment. I’d been called by my surgery and asked to make an appointment. My beloved was at work, so I went …
I like the term, chromodiversity. Like the term neurodiversity, it’s an attempt to change the narrative about common genetic variations from a concern with deficits to an acceptance of difference. But though I appreciate the term, I don’t think I’m yet ready to embrace that concept. While it may be appropriate for those able to …
Were I not battling the awkward lethargy for which I had no explanation then — as yet undiagnosed — and the consequential emotions that wrecked many a relationship, I often wonder if I could have achieved a higher grade at university. In my final year, I submitted an essay I put my heart and soul …
There are two aspects of my being which I tend to hide from the outside world for very similar reasons: my faith and the name of the condition I have been bestowed with. In both cases, because they are poorly understood and so badly misrepresented, that misunderstandings and prejudices are commonplace. More to the point, …
In the research into emotional regulation associated with this condition — extremely limited though it is — studies identify an increased tendency for passive coping amongst men with that extra chromosome. By passive coping, they mean behaviour such as isolating oneself from others, worrying about the past, taking refuge in fantasies, avoiding social interactions and …
The chromosome disorder I have been bestowed doesn’t manifest itself as a critical condition, seriously detrimental to one’s day to day life, as we’d consider the likes of cystic fibrosis or spina bifida. In my opinion, the impact of my condition is mostly psychological.
An outside observer might legitimately ask how it’s possible that I never discussed such a significant diagnosis with my wider family, but that would be to make assumptions about my ability to articulate my feelings about anything. In truth, I’ve barely spoken about any of the events in my life to anyone.
There’s something I never told you. Actually, there’s lots I never told you. But this one is bigger than everything else. I never told you, I suppose, because our relationships were fractious then. And, well, because I was struggling to come to terms with it myself. And because I had little reliable information at my …
There was an expression which followed me around in adolescence: “That boy just won’t get on.” Sometimes those sentiments came with the preamble: “I don’t know what’s wrong with that boy.” Mostly that was just inferred.
I feel like I am only now coming to terms with the impact of my character on my ability to function socially. It’s certainly easier today to access research papers on the condition than it was when I was diagnosed eighteen years ago. At that time, the information available to non-specialists was negligible, with just …
If others were asked what most defines my life, they would say religion: first being raised in a very religious home, then adhering to an alternative religious tradition from the age of twenty-one. However, I would say that what most defines me is a chromosome disorder undiagnosed in my youth. The failure to diagnose being …
