Herpes has become like a word you learn, and then suddenly hear everywhere. First I hear a podcast describe the of dilemma of a 19-year-old girl — my age — who was diagnosed with genital herpes, and she was really struggling.

Then, a few days later, a Tiktok appeared on my For You page from Alexa Mazur, a woman in her twenties, who was trying to explain how difficult it is to face rejection while dating in your twenties, and once again the key factor here was, she had genital herpes.

It caused me to really take a step back and reflect on what I know about the virus, and about STIs in general, which I soon realised, was not a lot.

What do you need to know about herpes simplex virus?

Herpes Simplex Virus has two strands HSV-1 (commonly affecting the lip and mouth, AKA oral herpes) and HSV-2 (commonly affecting the genitals, AKA genital herpes). The virus typically presents with blisters and cold sores. HSV-1 can cause genital herpes, whereas HSV-2 primarily affects the genital area. The virus can be contracted with skin to skin contact, kissing, oral sex or penetrative sex while someone is having an active outbreak or it can transfer if there are zero visible symptoms when someone is shedding the virus, which means their body is producing infectious virus particles that can be transferred, which can make it really tricky for people who have the virus to navigate.

According to a publication by the Queensland Government in 2023, it is estimated that one in eight sexually active Australians has genital herpes and up to 80% of Australian adults carry HSV-1. More than half of primary genital infections are caused by HSV-1 in young people due to the increase in oral sex.

An interview with Alexa Mazur, a woman who is more than her diagnosis.

@alexammazur

♬ original sound – Alexa Mazur

Alexa Mazur had contracted the virus from someone she had trusted, who told her that they had been screened for STDs and they were clean. So the experience of sitting in a room with her obstetrician-gynaecologist, who held her hand as she told her the news, and reassured her that wasn’t alone in this, was nothing short of traumatic.

Alexa didn’t have a yeast infection. Instead, it was two different STIs, and one was genital herpes. Alexa now takes an antiviral daily to ensure the physical symptoms of herpes don’t impact her. Her biggest hurdle to overcome since being diagnosed was the stigma.

“I still had my fair share of suicidal thoughts and heavy shame because of the stigma, the jokes we hear all the time and the misinformation that this somehow renders you filthy and less than.

“I shared my experience with my Mum, brother and sister-in-law as far as family. One of my best friends has HSV so she was the first person I called. The more people I have told, the less ashamed I’ve felt over the years but it definitely felt like a heavy secret in the early days,” Alexa said.

Something commendable Alexa has done since then has been taking something that is traumatic for her, and creating a safe space online for other people going through the same thing.

“It hurts my heart to think that anyone feels like they are unworthy of love, intimacy, or a great life because of a skin condition.

“Now, seven years into my story I have the confidence and self worth to deal with any backlash that comes my way.

“I’m willing to speak up to be a light at the end of the tunnel for those who are still dealing with the dark parts of their diagnosis,” Alexa said.

So far she has created several videos on Tiktok discussing her journey with the virus, defending people who have it, and breaking the stigma. She has reached millions of people in total and the views continue to grow.

“I am genuinely surprised and grateful for the fact that a vast majority of the comments are supportive and my DMs are flooded with people thanking me for sharing my experience and asking for advice.

“That being said, the internet is a safe space for unkind folks to anonymously comment and/or attack those they disagree with. I file them under a few categories, if they are spreading misinformation, I combat with fact. If they are saying hurtful or unkind things for the sake of it, I simply delete.

“The reach of the video has gotten to a point where I’ve had doctors and nurses sound off in the comments which is super cool to see. I’m not here to change the minds of people who are not open minded. I’m here to support those who need it and passively inform those who are open to considering the facts,” Alexa said.

In terms of disclosing the fact you have HSV, Alexa has some tips.

“Disclose when you feel safe and comfortable to do so. I recommend asking about their sexual history and health such as, ‘When was the last time you were tested and what were the results?’ Then you can gauge how often they’re tested, if they’ve had an STD, and what their initial experience might be with being exposed to HSV.

“Tell them directly and invite them to seek advice from a professional. Do. Not. Google. Google images are the least helpful thing in this scenario and are often misinformation. Go to your doctor, ask all the questions you have and better understand how you two can sleep together safely.”

Alexa’s final words for people who have been diagnosed are these: “You’re not alone! Hot girls have herpes. Cool people have herpes. You will figure out your symptoms, how often you have outbreaks and eventually even forget you have it sometimes. Focus on the other, more important parts of you that make you, you.

“Also, every person who has rejected the idea of potentially contracting HSV is not my person. My person is empathetic, kind and loves me so having this conversation early in a relationship allows me to weed out the wrong people to get closer to the one.” Alexa said.

So, where did the stigma come from?

In the 1980s, a pharmaceutical brand called Burroughs Wellcome developed the drug Acyclovir to tackle viruses in the herpes family, mainly HSV and chickenpox, when the drug didn’t reach the return on investment they had hoped, they began marketing it to genital herpes patients.

Articles began surfacing in newspapers across America, herpes even made the cover of Time magazine twice. Once with the title “Today’s Scarlet Letter, Herpes”.

Negative aspects of the condition were emphasised to heighten public worry. They branded genital herpes as “incurable,” making genital cold sores appear more serious than any other skin condition. While infections like thrush, chickenpox, and glandular fever also linger in the body, few can name any of these conditions as readily as they would naming herpes.

Professor Tony Cunningham and his work in vaccines

Professor Tony Cunningham has spent years researching and trialling a vaccine for HSV-1 and HSV-2. Professor Cunningham is a member of the Australian Centre for Vaccine Development Scientific Advisory Committee and serves in a number of international expert panels on HIV/HSV, antivirals, and vaccines.

In terms of creating a vaccine, Professor Cunningham and his team came very close in 2002.

“It was about 73-74% effective, only in women who had not had either herpes simplex type one or type two previously. So it was very limited. It was trialled again in 2012 and they found then 58% efficacy again against women with HSV-1 genital herpes but not effective for some reason against HSV-2.

“I still think the problem with the herpes simplex vaccines is that we haven’t got the right protein set up from the virus and we haven’t necessarily got the right immunostimulants,” Professor Cunningham said.

Professor Cunningham explained that herpes simplex virus isn’t easy to actually give to your partner, as there has to be small breaks in the skin or through a mucous membrane in the genital areas.

“That’s why only 3%-5% of people who do have genital herpes pass it on to their partner per year” Professor Cunningham said.

Professor Cunningham also contributed to a study that found more women than men are infected with HSV-2, more urban people than rural people are infected with HSV-2 and a higher proportion of Indigenous population is infected.

It’s difficult to know if genital herpes will ever be destigmatized, but with the ever increasing social media presence of creators who share their story of living with the virus, as a society we might slowly start to accept it as the skin condition it is, rather than the things we have been led to believe about it.