In National HIV Testing Week, we're sharing Kayo Chingonyi's moving chapter from Beneath the Skin, which tells of how HIV has affected him and his family.

In Beneath the Skin, fifteen writers each explore a different body part. Published in partnership with Wellcome Collection, it is a funny and awe-inspiring voyage through the mysterious landscape of our bodies.

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Kayo Chingonyi

If I meet someone new, let’s say at a dinner party, and that person asks about my family or my childhood, then I test how little I can get away with saying. This works exceptionally well if I’m sat next to an extroverted, chatty, person who, if I make the right sounds from time to time, will happily fill in the gaps. ‘I’m told you’re a poet; that must be difficult. I mean how does anybody make any money doing that? But I hear you have a book and you’re doing really well so you must be doing something right?’ It is fascinating to note how one-sided an exchange can be, how few words you can speak and still be in a conversation with someone. If I’m feeling particularly mischievous I make things up. The trick is to try and keep a straight face. If you can say something with a straight face even the most incredulous of sceptics will be taken in for a moment.

Sometimes I don’t have to fabricate anything; someone will make an assumption about my life and I simply won’t correct them. So when they ask where I grew up and I tell them, and then they imagine me living there with my parents, it is easier to stick to what they believe to be true than to explain myself further. Talking to someone for the first time is rarely the right moment to share the most painful facts about my life. But the things that come up when two people are trying to get to know each other, when both parties are attempting to appear breezy and casual, are very difficult for me to talk about. If I tell the truth, there is no way of making that truth light. If someone asks about my mum and dad, I can’t say to them ‘They both died when I was a kid.’ Or rather, I can, but if I do, that immediately pushes the conversation in a certain direction. Parents are not supposed to die so early in their children’s lives, and so sharing one of the most basic truths of my life means causing other people discomfort. ‘How did they die?’ is a natural follow-up question but, in this country at least – where restraint is an art form – nobody ever asks me that, though their facial expressions sometimes do. Faced with a choice between letting someone I don’t know believe I have lived a life I have not lived and watching their face change as they struggle to know what to say or do, I more often than not choose the lie. 

It is that question, of how my parents died, that brings me to the subject of blood. If I’m in a forthcoming mood and someone asks me directly, ‘How did your parents die?’ I might say that my parents died from ‘a blood condition’, which takes care of the salient points but is mercifully vague. What I rarely say is that both my parents died from bronchopneumonia because they had HIV. I never elaborate and say that they died because HIV impedes the function of white blood cells, the cells that help the body protect itself. I don’t go on to explain that in Zambia, where I was born, ‘the prevalence of HIV among adults is thought to be somewhere between 12 per cent and 20 per cent depending on the region’. I don’t say that Zambia is a country where around half a million children have lost a parent or both parents to the virus. The reason I don’t, is shame. There is so much stigma, lots of which is racialised in deeply problematic ways, and such a dearth of understanding around HIV, that I don’t feel able to say what is true without incurring judgement.

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