I’m sitting alone in a sterile, white room at the UO Health Center, staring at pictures of clownfish on the wall. I’ve just had a routine well-woman exam and STI panel. I try to be responsible about these things, so I’ve already told my doctor about a recent partner who may not have been totally honest about their sexual history.
After a 15-minute wait, my doctor returns to gently inform me that I’ve tested positive for the Herpes Simplex Virus. She’s obviously waiting for me to panic — but I’m not panicking. I’m already involved in several sex positive communities, so I know there’s no reason to have a meltdown. Mostly, I’m just mad that I made the mistake of trusting someone I probably shouldn’t have.
Of course, I text that partner as soon as the doctor leaves. They respond with a lackluster: “I honestly don’t know what to say.” They tell me they didn’t know about their status, but they’ll go to the clinic after lunch to be sure.
“I hope you don’t hate me,” they say. “I’m sorry that I unknowingly hurt you.”
In the following weeks, we go on to have several friendly conversations in between updates about the health stuff. Of course, I can’t ignore the fact that this person apparently misinformed me about my risk in order to obtain my consent. But, as I quickly realize, pointing fingers about who “infected” whom is ultimately a self-destructive process. Whenever I wield the discourse of shame and blame against them, my own feelings of shame intensify.
My feelings become even more complicated when I discover that official CDC guidelines recommend against testing for herpes during routine STI panels unless there are symptoms or a patient discloses unprotected sex with multiple partners. Despite the fact that I had been requesting routine STI panels for “everything,” I wasn’t being tested for herpes.
In reality, I could have just as easily been carrying the virus without knowing it.
I’ve been surprised by a lot of what I’ve discovered in my research over the last month. But most of all, I’ve been surprised by the sheer intensity of the emotional distress I’ve experienced following my diagnosis. I’ve cried in therapy a lot — ugly, snotty crying broken up only by half-formed questions about whether anyone will ever love me again.
It turns out that my experience is common enough. Studies show that people with recent STI diagnoses frequently experience social isolation, sexual anxiety and decreased self-esteem. One study actually compares the coping process and psychological effects of a herpes diagnosis to those of a cancer diagnosis. I’ve even seen people talking online about how they contemplated suicide following a diagnosis.
Frankly, it’s a pretty dismal situation on this end of the stigma.
But it doesn’t have to be like this. Breaking the stigma begins with correcting two commonly-held beliefs: 1) that herpes won’t impact you or someone you love, and 2) that herpes has massive consequences for one’s physical health.
Let’s talk facts.
There are two strains of HSV, helpfully labeled 1 and 2. According to the World Health Organization, two-thirds of the world’s population under 50 already carries the HSV-1 strain. There’s a lower chance that you’re carrying HSV-2: the Harvard Medical School estimates that HSV-2 affects about 1 in 4 Americans. Although HSV-1 is popularly referred to as “oral herpes” and HSV-2 is more often called “genital herpes,” you shouldn’t be misled by these misnomers because you can contract HSV-1 and HSV-2 at any body orifices including the eyes, the mouth and the genitals. Genital herpes can therefore be passed through any number of physical exchanges — including everything from oral sex to penetrative sex to plain old skin-to-skin contact.
Dr. Monique Tello, a contributor to Harvard Health Publishing, argues that “genital herpes is far and away the most common sexually transmitted infection that we see in primary care.” However, most people carrying the virus never realize it because signs of genital herpes are often confused with other problems like ingrown hairs, pimples, insect bites and razor burn. The CDC estimates that “87.4 percent of 14- to 49-year-olds infected with HSV-2 have never received a clinical diagnosis.” Accordingly, it should be no surprise that most new herpes contacts are with people who don’t know their status.
Yet, despite its ubiquity, herpes gets a worse rap than other STIs that can be cured. It should be noted that the lack of a cure doesn’t necessarily mean that herpes symptoms never go away; in most cases, symptoms decrease in frequency and severity after the initial outbreak. That’s especially true now that there are effective long-term suppression treatments which can reduce outbreaks by 70-80 percent.
Many people on suppressive therapy stop having outbreaks altogether and have minimal viral shedding — meaning that their sexual partners enjoy a relatively low probability of transference. One study showed that suppressive therapy reduced the transmission of HSV-2 between discordant heterosexual partners from 3.6 percent to 1.9 percent. Those odds are comparable to the average risk of pregnancy (2 to 15 percent) when using condoms.
Even without suppressive therapy, the rate of transference is lower than you might expect. In one 18-month study of 528 couples, researchers found that out of every 10,000 sex acts between discordant partners, about 8.9 people with vaginas and 1.5 people with penises contracted genital herpes. The risk, as with most STIs, is higher for people with vaginas.
In other words, for the vast majority of people, genital herpes just isn’t a big deal. If anything, it’s an annoyance that prevents you from having certain kinds of sex during outbreaks and for 7-10 days after. Though a diagnosis can certainly feel like a death sentence for your love life, the situation is far from hopeless.
Moreover, life for HSV-positive people can continue to improve if we develop a broader public understanding of sexual health. Luckily, online communities already offer a wealth of resources and social solidarity. I personally found immense support through conversations with Courtney Brame, founder of @honmychest on Instagram and the Something Positive for Positive People podcast.
Still, talking to strangers online isn’t enough. Discussing my status with friends has made me realize that people are already becoming more open-minded. I guess that’s why I’ve written this (extremely long and extremely public) article: at the end of the day, I’m not actually fighting the stigma as long as I keep treating my own status like a humiliating secret.
Because non-monogamous sex is becoming the new normal, the spread of herpes and other STIs is accelerating. It’s important, then, that we commit to opening up a more compassionate conversation about STIs. We need to create a world where people know how to get tested, why to be honest about their sex habits and when to disclose their status.
Most of all, however, I want to create a world where we demonstrate greater care, generosity and respect towards our sex partners and ourselves.
Community Support and STI Resources:
Westover Heights Clinic herpes handbook (recommended by doctors at the UO Health Center)
Instagram accounts: @honmychest, @my_boyfriend_has_herpes, @aaronsager_, @positive.results.atx, @tatted_std_warrior, @lifewithherpes, @sexelducation, @talys_undermyskin