Hidden identities

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, because very vocal activists — in both spheres — are intent on pushing their own very skewed and polarised representations of the phenomenon. The internet is awash with misinformation, presented as authoritative guidance, where in fact reliable information is actually very hard to come by. You have to really struggle to sift the wheat from the chaff.

I would never invite anyone to google the name of my chromosome disorder, as I was advised to by the locum doctor who delivered the diagnosis two decades ago, admitting that he didn’t know anything about it at all. In one sense, I was blessed that the internet was in its infancy then, meaning that there wasn’t very much useful information at all.

Today, it is a different story. On the one hand, it is much easier to access clinical studies and reliable medical explanations of the condition. On the other hand, there is now a proliferation of misleading journalism and activist content, pushing other agendas altogether.

But the religious realm is not much different. The same, but magnified a billion times. At least with my chromosome disorder, it is so rare that few will ever hear of it, unless they happen know someone with a diagnosis. But in the case of the faith, apparently so central to modern geopolitics, it is everywhere discussed. Even the total ignoramus has an opinion.

So it is that I keep my head down, never speaking of either, except here in my blog, which is my safe space to surface what is so important to my life. My chromosome disorder is spoken of in generic terms, as I delineate its impact on my life. My faith is discussed more openly here, but only here.

I am not particularly content that I feel the need to hide my identities. But such is the nature of misinformation: it poisons everything.

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