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In HIV ‘undetectable’ is the new buzzword and it’s usually only ever linked with sex but, for me and many other positive people, it means so much more…

Undetectable is a fairly recent entry into the HIV / Sexual Health lexicon. If you’d told someone ten years ago that you could have a suppressed viral load and be considered non-infectious they may well have laughed at you. Heck, if you’d told someone thirty years ago that there’d be single-pill one-a-day treatments they probably would have laughed at you too.

HIV has moved on so quickly, faster than any other area of medicine in the world. We’ve gone from a untreatable death sentence thirty-odd years ago, to a ‘chronic manageable condition’ today – one that is, rightly or wrongly, often compared with diabetes or asthma. The HIV lexicon is changing and growing at an incredible pace – suppressed, PEP, PrEP, Truvada, Triumeq, co-infected, reservoirs, functional cures… but the most important, and often misused one is ‘undetectable’.

Being undetectable does, of course, mean amazing things for sex. It means I’m essentially non-infectious, I can’t pass it on to my sexual partner. Great. But it’s so much more than that.

It felt like I might as well have had green alien acid blood...
It felt like I might as well have had green alien acid blood…

From the day I was diagnosed I no longer felt in control of my own body. I felt like I was being controlled by these invisible viral monsters swimming through my veins, living in my organs and defiling my brain. I was dirty and there was nothing I could do about it.

Shortly after my diagnosis I was cooking a meal at the family home and I clumsily managed cut my hand with the knife. There was blood. My sister came to help me but I recoiled and told her to go away. It wasn’t rational, my blood wasn’t some horrible acid that would burn her skin off, and there was no real way for her to be at danger – but that didn’t stop me feeling like a real and present danger to her. I felt like some wretched monster – and that didn’t leave me for weeks.

The day I found out that my medication had been doing it’s job and had suppressed my viral load to an undetectable point was one of the most joyous days of my life. I wanted to jump up and punch the air. I was beating it, I was smashing the monster within me, I was taking back control of my own body. I no longer felt like a threat  – to my family, to my partners, to my friends, to the general public.

But this was something I had to work for. It took months to get to this stage, it took my perfect adherence to my (less than pleasant) medication, it took stamina and sheer determination. It was hard work, but it was worth it.

I felt the worry about HIV that had consumed me for months float away like dozen balloons. I was back in control. I started to think about my own life again, where I was now, where I wanted to be, what was next – it was the first time I’d thought about the future properly since my diagnosis. I was a whole person again. I wasn’t defined by a weak little virus. I was Tom, and I had a future to look forward to.

It’s also worth noting that some people may never be able to quite achieve the ‘undetectable’ status, no matter how much they reconfigure their meds – and it must be heartbreaking to see an ideal you cannot reach. So to consign their goal, their aim, their hopes to just being about sex seems unfair if not down right rude.

Undetectable is a wonderful place to be, but it takes work. Sex is great, but ‘undetectable’ stands for so so much more.

Tom Hayes (@PositiveLad on Twitter)

Tom was diagnosed with HIV at 25 in August 2011, and has since worked as a HIV activist and treatment advocate – as well as campaigning on other equality issues. Tom has spoken at the European Commission on fairer access to healthcare, at the European Parliament and Sex & Relationship Education, and at the United Nations on HIV related Stigma. He also speaks regularly on British TV & Radio about the need for increased education and HIV testing. 

1 COMMENT

  1. Insightful little piece- thank you for writing and sharing it! I see ‘undetectable’ as a kind of badge of honour and an empowering, new definition for people living with HIV in 2015. Living is the operative word here. ‘Undetectable’ is certainly something to shout from the rooftops and educate all people about- the future is bright! While I respect the right of those with a strong CD4 count and not alarming viral loads to not go on meds, there really does need to more said about the *manageable* and treated aspect of HIV in 2015. Maybe one day soon, we can all move to making HIV stigma ‘undetectable’ too! Fingers crossed! 😀

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