Back in 2022, I contracted herpes after receiving oral sex from someone I’d been dating for years. They had an active cold sore at the time—we’d historically avoided sexual contact when they had an outbreak, but this time we pushed our luck. The luck ran out. 

My diagnosis made me re-evaluate how much I thought I knew about my sexual health, and completely changed how much I knew about HSV. 
 

When most people think of herpes, they’re thinking about HSV-2, the virus commonly known as “genital herpes.” But that strain isn’t the only possible cause of herpes outbreaks in the genital area. HSV-1—the strain of the virus that causes the common cold sore—can also appear on the genitals and cause identical symptoms. I contracted HSV-1.
 

By all accounts, my first outbreak was very mild—but when I discovered it, I naturally freaked out. I made my partner photograph the rash from different angles, comparing it to photos from Google Images, each one more gruesome than the last. I remember lying on the bed with a cold rush flooding through my chest: How could I have let this happen? 

And perhaps more importantly: What now?
 

As a queer, sexually active and community-oriented person in Toronto, I considered myself well educated on topics of sexual health. I got tested regularly, stayed up to date on new HIV treatments and usually followed health public advice to the letter. But where HSV was concerned, I was ignorant. My diagnosis sent me down a rabbit hole filled with half-baked advice and contradicting information. I soon realized there was a reason no one talked about herpes—no one could agree on what to say. Since that day, I’ve had countless conversations about genital herpes with a variety of people, and received as many differing opinions. So, I set out to straighten out the facts. Here’s what I learned.
 

How common is herpes, really? 

It depends what strain you’re talking about. Cold sores are exceedingly common—over 70 percent of the global population has them. So, does that mean everyone who gets them technically has an STI? 

Not necessarily, says Stevie Sheehan, a registered nurse who specializes in sexual health. “The classification of an STI is more to do with the route of transmission than the location of the infection,” Sheehan explains. “HSV-1 (oral herpes) can be transmitted through sexual contact—in that case, it would be classified as an STI regardless of where it appears.”

In Canada, the prevalence of HSV-1 is increasing, along with the proportion of HSV-1 affecting the genital area. In some developed countries, HSV-1 has become the primary cause of first-episode genital herpes in young adults, according to Aida Sivro, a microbiology researcher at the University of Manitoba and a manager for the National Microbiology Laboratory. 

Genital herpes, meanwhile, affects an estimated five million people in Canada. That’s about one in seven of us . It’s remarkably common but still rarely talked about. I think the double-edged sword of prevalence and stigma drives this paradox: so many people have herpes that it can feel inconsequential. Yet those who do find it consequential often don’t feel that they can discuss it because of stigma. 
 

How can I get tested for herpes? 

The first order of business when I realized I was having an outbreak was to get a surefire diagnosis. I went to a walk-in sexual health clinic in Toronto, and they confirmed via NAAT/PCR swab testing that I had contracted HSV-1, specifically. 

I learned only later that in all my previous STI screenings, I’d never actually been tested for HSV. Most people don’t know that HSV testing isn’t part of a standard STI panel—I certainly didn’t. 
 

“Since we do not routinely test HSV-1 or HSV-2, we generally only diagnose when a patient presents with active genital lesions,” says Sheehan. For those without active lesions, the only option is a blood test. However, asymptomatic screening is not often recommended because, as Sheehan notes, “[It] cannot tell you if there is an active outbreak, when the HSV was acquired, or what location it will present in—for example, oral vs. genital.” 
 

Many people who are herpes carriers will never have an outbreak or experience symptoms. Dr. Darrell Tan, an infectious diseases physician at St. Michael’s Hospital, adds that as herpes is a lifelong, incurable infection that can often go unnoticed, it might do more harm than good to diagnose it. “There’s data out there showing that if you diagnose people with herpes based on a blood test, but in the absence of symptoms, that can cause psychological harm,” says Dr. Tan. “Because HSV is so stigmatized, [the diagnosis] causes anxiety for understandable reasons. In that case, we haven’t done the person any favours.” 
 

Is herpes dangerous? 

For most of the population, both HSV-1 and HSV-2 are mild and won’t cause severe health problems. It’s important to note, though, that herpes can cause health complications for severely immunocompromised individuals (such as those who have cancer), as well as for newborn babies. For birthing parents with genital herpes, doctors recommend taking a suppressive treatment such as Acyclovir at 36 weeks to ensure no outbreak is present during birth.
 

It’s also possible (but very rare) for herpes to turn into encephalitis, a life-threatening infection of the brain. Many other common viruses, such as Epstein-Barr (mono), mumps and chickenpox, also carry this risk—and as Dr. Tan puts it, the incidence is “very, very low.”

According to Dr. Sivro, “the impacts for many people include discomfort during episodes, anxiety, stigma and concerns about transmission.”

It’s true that for me, at least, the psychological impacts of having herpes have far surpassed the physical effects.
 

How should people navigate disclosure? 

I’m no longer with the long-term partner I contracted HSV-1 from, which means I’ve had to come out of the proverbial closet to new sexual partners. When I first started sleeping with new people after my diagnosis, I searched high and low for advice about how to approach this new hurdle. Still, the directives around herpes disclosure, from a public health perspective, are mixed. 

Some experts believe disclosure isn’t necessary, since most people carry some form of the virus. “My honest opinion is that it’s not worth it,” says Dr. Tan. “Typically, HSV-1 is acquired in childhood, and it often fizzles out over a person’s lifetime. It’s not practical to tell three-quarters of the population to share this information.” Whether it presents orally or genitally, Dr. Tan believes HSV-1 is common enough for the drawbacks of disclosure to outweigh the benefits. 
 

The same factors hold for HSV-2, he says. “About 10 to 20 percent of adults will carry [it], and most won’t have symptoms. If we tell people they have to disclose to all their partners, it gives them an extra burden that is not helpful.” 
 

Still, many health professionals do support disclosure. “It’s ultimately a personal and contextual decision,” says Dr. Sivro. “Some studies have found that only 10 to 25 percent of people are aware that they have a herpes infection. But to reduce transmission, it is important to disclose any STI to a sexual partner.” 
 

Can herpes be transmitted between outbreaks?

Now that the shock of the initial phase has passed, I often forget about my herpes diagnosis. It doesn’t affect my day-to-day life: in fact, I never experienced another outbreak after the initial one. While many people go years, or decades, between outbreaks, the risk of transmission isn’t totally eliminated. 
 

“HSV can often be spread during asymptomatic viral shedding or during the prodromal phase before any sores develop,” Sheehan says. A person with more frequent outbreaks may be more likely to transmit HSV over time, but someone with rare outbreaks can still shed the virus and transmit. 
 

How can a person prevent transmitting herpes?

If you know you have herpes and want to reduce your chances of passing it on to anyone, you can take a suppressant medication. These come in pill form, and they can be used in a few different ways—started as soon as symptoms begin, or as daily suppressive therapy for people with frequent recurrences. “Suppressive therapy [such as Acyclovir] can reduce outbreaks and viral shedding, but it does not eliminate transmission risk,” says Dr. Sivro. 
 

And while treatments currently rely on the person carrying the virus to act, the science around HSV-1 and HSV-2 is still evolving. Dr. Tan’s lab at the University of Toronto is beginning research that could allow Valacyclovir, to be used as prophylaxis to prevent herpes spread—similarly to PreP for HIV.
 

How can we manage stigma in the meantime?

Even if better prevention eventually changes how herpes is transmitted, it won’t undo decades of misinformation, or the isolation many people feel after a diagnosis. In my experience, confronting the reality of the virus is the best way to avoid carrying that load alone. When I share my HSV status with potential sexual partners, I’m often pleasantly surprised and comforted by their reactions. Most people, I’ve discovered, don’t know much about what a herpes diagnosis means—but they are eager to learn. 

Recently, I wrote a poem about my diagnosis as a way to process an experience I still hadn’t fully come to terms with. I later workshopped it in a room full of other queer writers. That night, one of them reached out to me to share that she also had genital herpes—she’d had it since she was a young adult, much younger than me—and that my poem spoke to her. A few days later, I sat down to write this piece. 
 

I’d like to say I understand my diagnosis better now after examining it from every angle. The fact is that I’ll have HSV-1 for the rest of my life, but that doesn’t make me anything other than part of a majority. And if I’m lucky, I’ll meet more people along the way who will make me feel all but unique.