I Felt Like A Sexual Pariah: There’s Still A Stigma About Herpes

It was Christmas Day and Flo was frantically googling symptoms. That morning she’d found several sore spots on her genitals. She hoped she was overreacting but the search results didn’t look promising. Two days later a doctor confirmed what she already suspected: she had herpes. "I was devastated," says Flo, 29. "It made me feel like a sexual pariah. I thought I was damaged goods."

For many of us, herpes is a well-worn punchline. "What's the difference between love and herpes?" goes the joke. "Herpes lasts forever." But few people know how common it actually is. Nearly 70% of adults under 50 worldwide have either oral or genital herpes. One in three of us will experience herpes symptoms at some point in our lives.

Erica Spera presents dating podcast Shooters Gotta Shoot with co-host Molly DeMellier. She recently 'came out' on the show about having herpes and is on a mission to break down the stigma around it. "Doing the podcast was such a weight off," she tells me on Skype. "I felt like I wasn’t hiding anymore. I had people reach out – people I never would imagine had it – like, 'Oh my gosh, me too!' They were so relieved to have someone to talk to."

Spera, 28, was diagnosed with herpes three years ago. She hopes that by talking about her experience she can show that it’s normal. "It isn’t a big deal," she says. "Pretty much half the population has it so it shouldn’t have this scarlet letter stigma."

Unlike STIs such as chlamydia which can be treated with antibiotics, there is no cure for herpes. A study of women who had recently contracted herpes found that 34% felt depressed and 64% experienced anxiety following their diagnosis. Many are left feeling 'undateable'.

"My first thought was, How will I get a boyfriend now?" Spera admits. "You feel like you ruined your life." Her feelings are echoed by other women, most of whom asked to be identified by their first name only, or requested I use a pseudonym. "I feel shame and embarrassment that I carry this 'taint'," says Ruby, 40. Mariana, 33, told me: "I was worried I’d have regular breakouts and it would affect my sex life massively."

Maggie was 19 and in a monogamous relationship when she contracted herpes, yet her doctor made her feel disgraced. "He made me feel like the sluttiest, most shitty person," she says. "At one point, my grandmother poured holy water over my vulva. She was convinced I had sinned so badly even Jesus wouldn't help me."

The fact that the virus stays with you for life is a key reason why people have such a pessimistic view of it. Yet many find that after the initial outbreak, they do not suffer from further symptoms.

"People worry because herpes is 'incurable'," says Dr Naomi Sutton, a consultant in sexual health and contributor on Channel 4’s The Sex Clinic. "But the virus does not cause long-term issues. Some people will have recurrent blisters but the majority will have one episode and never need to worry about it again!"

Mariana has only had a couple of mild breakouts since her diagnosis four years ago. For Flo, that first time on Christmas Day is her only flare-up. Some people, particularly those with immune problems, experience repeated outbreaks but these are generally manageable. "I take a dose of antiviral medication and hope for the best," Ruby says.

There are eight human virus types in the herpes family – including chickenpox and glandular fever. HSV-1 and HSV-2 are the two which cause herpes. HSV-1 is more associated with oral herpes (cold sores) but both types can cause both kinds of herpes. Oral herpes can be transmitted to the genitals and genital herpes can be transmitted to the mouth, often via oral sex. But the virus does not spread through the body so if you catch it on your face, it will be limited to that area.

Symptoms include painful sores as well as itching, tingling and inflammation. An antiviral drug may be prescribed by your doctor but in most cases the flare-up will clear up on its own. There’s no doubt it’s unpleasant, but for many people the worst part comes from the awkwardness of having to discuss it with sexual partners.

"At the time of my diagnosis, I was starting to see a new guy and the idea of having to tell him was horrifying!" says Flo. "The first night we spent together I pretended to be on my period." However, she says her current boyfriend wasn’t bothered at all. Some people say they make it a point of principle to tell every partner; others say they gauge it on risk.

"I recently had an outbreak when I had a date planned so I sent him a message to cancel and explained why," says Ruby. "It was a horrible feeling to send that message, but I couldn’t not. He sent back a row of laughing faces and I didn’t hear back...until a couple of weeks later! I guess his libido won out over his revulsion."

The risk of transmission is low if you don’t have symptoms. However, there are times when there is enough virus in the skin to pass it on, even without symptoms. This is called 'viral shedding' and occurs around 2% of the time. It decreases with time and for people with few recurrent outbreaks, the risk is minimal. But herpes is transmitted by skin contact so even if you are using protection, you can still catch it.

"Using condoms and dams can reduce transmission but cannot prevent it entirely," explains Dr Annabel Sowemimo, a doctor of sexual and reproductive health and founder of Decolonise Contraception. "Any sexually active person can catch herpes. There is no way to prevent transmission or completely eradicate the virus."

Such is the likelihood of catching it eventually that you might say it’s not worth worrying about. Herpes cannot cause infertility or lead to cancer; it is extremely rare for it to have any serious effect on a person’s long-term health. Why then does it remain so taboo?

It’s actually the benign nature of herpes that makes it so embarrassing, says Jenelle Marie Pierce, executive director at The STI Project and founder of the herpes activists network, HANDS. "It doesn't cause major health concerns, so it becomes fodder for ridicule and a stain on someone's reputation."

Now 43, Maggie hasn’t had an outbreak since 1998. She still doesn’t like to talk about it but she recently told an acquaintance who had just been diagnosed. "I told her I had it too and that it was going to be okay. She was so relieved," she says. "I think we just need to normalise it. They sell Carmex for cold sores in every grocery store so the message is that it’s no big deal but if it's genital herpes then it’s like, 'Ho boy, you must be a slut who deserved it!'"

The ignorance surrounding herpes makes people feel like it’s a life sentence. In reality, the virus is little more than a painful nuisance which almost all of us will get at some point.