The Accidental Herpes Poster Boy
I want to extend a warm welcome to Cameron Poole, this week’s guest writer and Deputy Director of the Herpes Viruses Association and creator of the recently launched The Viral Truth, to talk about a virus that many of us have, but few of us speak about.
Being British is, for me, perhaps the only embarrassing thing about herpes. We pride ourselves on our progressiveness (so long as it comes with social approval) but we still have lingering puritanical ideas when it comes to sex. This makes us culturally closer to our cousins in the USA than our more relaxed and pragmatic neighbours in Europe, where herpes is more often regarded as an inconvenience than the catastrophic end of a person’s sex life.
You’d be hard pressed to find anything scary if you Googled it in French or Danish. Herpes stigma is particularly entrenched in the English-speaking world. A diagnosis of genital herpes is usually followed by a tumble down the Google rabbit hole, where confusing, alarming and often contradictory information can cause far more psychological distress than the physical symptoms. The modern stigma exploded during the 1980s, fuelled by pharmaceutical marketing, and more than forty years later, we still haven’t grown out of it.
And if herpes is the most unsexy word in the English language, then genitals must be a close second. It’s a word about as attractive as the penises and vaginas it describes. They are seldom works of art; hence ‘bumping uglies’, as a self-deprecating euphemism for having sex.
Location is as much an accomplice to stigma as language. Catch the same infection on the face and it’s just a cold sore; on the hand or finger and it’s a whitlow, but get it on your bits and there’s no nickname, no linguistic softening - just the harsh medical label itself. Language matters and can profoundly shape how someone feels about what they’ve been told. Decades of stigma have even furnished herpes with its own sinister vocabulary: it is contracted rather than caught. A recurrence becomes an outbreak. Its incurability is highlighted as ominous rather than unremarkable, like chickenpox and glandular fever which also recur. Its incurability is highlighted as ominous rather than unremarkable. And when it comes to telling a partner, the condition is catnip for online virtue signallers, who insist it must be formally disclosed rather than simply mentioned as part of an ordinary conversation about sexual health.
It is, to borrow the asinine, stale and adolescent phrase so often attached to herpes, the gift that keeps on giving - not least for those who benefit from the stigma: tabloid journalists, peddlers of bullshit cures, segregationist STI dating apps, lazy comedy writers and the like.
As if that wasn’t enough to combat, medical literature can give disproportionate visibility to complications and unusual cases, while online support groups can become echo chambers of doom, guilt and performative righteousness, often populated by people who have learned to live within the stigma rather than challenge it. In doing so, they can end up reinforcing the very thing they supposedly exist to overcome.
Internet algorithms tend to reward negative content, amplifying what can happen at the expense of what is actually likely to happen; the tabloid press does much the same, so even when presented with the facts, many still cling to the prevailing narrative.
Perhaps due to its wildly disproportionate reputation, few people expect to catch herpes or give it much thought until they’re diagnosed. Yet by age 25, around six in ten people in the UK carry HSV-1 and one in ten carry HSV-2; by 35, carrying herpes simplex is almost universal - but most have it so mildly they never realise! This isn’t widely known to the public, so what is routine to a healthcare professional can feel to the patient like being handed a leper’s bell, making the language used at diagnosis crucial: it can either normalise the condition or reinforce everything the patient already fears about it.
My own diagnosis initially dented my confidence, but I soon reclaimed it. I’m fortunate that it rarely bothers me and, if anything, gives me an incentive to stay healthy.
After more than six years as Deputy Director of the Herpes Viruses Association, immersed in the reality rather than the mythology, I see the hype for what it is: exaggeration and misdirection, a grand illusion like the Wizard of Oz exposed from behind the curtain.
Over the years, I’ve helped normalise and disarm herpes for people of every age, race, religion and profession: newly diagnosed teenagers and newly single widows, gay couples and unfaithful partners, sex workers and Premier League footballers, concerned parents and doctors with questions of their own. Old or young, rich or poor, famous or unknown, your place in society makes no difference to herpes simplex. Like death and defecation, it is indifferent to social status.
Whatever concern brings someone to us, the antidote is facts, context and perspective, delivered with compassion, understanding and occasionally humour.
Most answers can be found on the HVA website, but people have usually already read themselves into a state of despair. Information is everywhere, but genuine human connection is increasingly scarce, and sometimes people just need a conversation with an understanding stranger who knows what’s what.
Before the Covid pandemic I ran an events company, and before that my varied employment history had included video production, teaching, voice work and lyric writing; I’d promoted the Czech Republic and travelled China with a Welsh fairground. I’ve never been a stranger to an unusual career path, so becoming a herpes expert fits—and has proved endlessly fascinating.
When the pandemic passed, I could have rebuilt the events company, but by then knowing I was making a significant difference to people had become rather addictive and given me a new sense of purpose. The public narrative surrounding herpes remains harmful, outdated and unnecessarily cruel. I am helping to correct that, so I feel a duty not to walk away from it.
Publicly associating myself with something most people would rather keep secret rather suits my contrarian streak and contempt for misinformation, injustice and social cowardice - and the novelty and rewards far outweigh the relatively small personal cost.
There’s also something empowering about having expertise in a subject so widely misunderstood. It makes me feel useful and, at 52, that matters considerably more to me than being fashionable.
As I say at the start of my first YouTube video for The Viral Truth:
”What most people think herpes is - doesn’t really exist.”
Cameron Poole is Deputy Director of the Herpes Viruses Association and creator of the recently launched The Viral Truth, an independent sexual-health education project challenging herpes misinformation and stigma.
Find the HVA at https://herpes.org.uk/ and The Viral Truth at @viraltruthmedia
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Excellent post with information that is very helpful.