We were sitting on the same side of a booth at our favorite pizza place when my partner, Dan*, told me about his recent clinic visit. "The doctor said it kinda looks like herpes," he explained. "But they don't really know."
Several days earlier, he had shown me a small, red dot on his skin. "Does it hurt?" I asked. He said it didn't. "Does it itch?" He shook his head. It didn't feel like anything; it was just there.
It seemed nothing like the constellation of open sores whose stinging emergence between my legs prompted me to visit my university's health center four years prior. There, a nurse took one look at me before declaring my symptoms a herpes outbreak. A culture of the affected area confirmed her diagnosis, she later told me over the phone. There was no doubt about it: I had genital herpes. And since then, I've always known I might unintentionally transmit it.
It didn't come as a shock, then, when my partner of three years found an unfamiliar spot on his penis. Though we consistently used condoms, which can cut the risk of herpes transmission by half, we both understood that nothing could fully prevent the virus from spreading during sex. Together we had chosen to accept that as part of our relationship. At peace with my body and practiced in discussing sexual health, I reconciled myself to the possibility of transmission as a bridge we'd cross when we got there. But I wasn't sure how I'd actually feel if we did.
Our first conversation was decidedly undramatic. We agreed that he should make an appointment to get a professional opinion and necessary tests. He appeared equally calm the next time we spoke about it, despite the inconclusive results of his appointment. The idea of having acquired herpes didn't seem to frighten him; as he pointed out, he had signed up for this risk. Besides, it wouldn't change our relationship much. We'd continue using condoms, which I preferred to other forms of birth control, and which he, more wary of impregnating me than contracting a sexually transmitted infection from me, insisted on wearing for peace of mind. As we talked between bites of pizza and sips of fountain soda, I felt proud of us.
Yet, in the back of my mind, I questioned my composure. Part of me felt compelled to apologize. Another part of me countered that apologizing would mean assuming blame for Dan's decision to be with me. I recognized that neither of us had done anything "wrong," that our shared sex life constituted a shared responsibility. Still, I couldn't immediately shake the tiny voice inside telling me I was supposed to feel terrible. The underlying expectation here was that he ought to feel terrible, too.
That's because herpes remains heavily stigmatized. Many people will tell you it's the stigma, not the disease itself, that's most painful. In becoming knowingly herpes-positive, not only does one have to come to terms with being a person that society has erroneously categorized as "bad," but one also has to contend with one's ability to pass it on. It's a burden most people would rather live without.
The irony, of course, is that not knowing one's status makes it harder to take steps to prevent transmission. "We've created a scenario in which people feel it's better for them not to know," says Peter Leone, Professor of Medicine at the University of North Carolina. "They view it as, 'Well, I can't get rid of it, and I have to have this discussion. So if it's not bothering me, if I don't know and someone gets it, it's not my fault because I didn't know. So I'm just not going to know.'"
And in fact, many people don't know they're infected. "80 to 85 percent of people with genital herpes in the US don't know they have it," Leone says. "People will come up with every explanation for what they think they have rather than an STD." Many people also carry the virus without experiencing symptoms.
When herpes entered my life, however, it was undeniable. And so I acted accordingly: I disclosed to partners. I encouraged them to get tested. I taught myself everything about the virus that sex ed had failed to. I taught my partners those things too, discovering in the process just how little my peers knew about STIs. Aware that people who spread herpes are conceived as selfish, deceitful, heartless, I tried to be the opposite. I was afraid of being seen as the type to transmit without giving a crap about the consequences.
"I'm sorry," I offered.
"There's nothing to be sorry about," Dan replied. "I mean, I don't really care. And I don't know if I actually have it."
The doctor couldn't say for sure based on her examination, and the swab test she performed came back negative, which could either mean that the spot on Dan's penis wasn't a herpes sore, or that the sore had healed past the point of viral detection, she explained. "They basically left it at, 'your guess is as good as mine,'" Dan recounts to me now.
He got closer to a definitive answer when his blood work came back positive for herpes simplex virus type 1. But that wouldn't be enough to identify the mystery spot with certainty. The problem? Blood tests cannot determine location of infection. Whereas HSV-1 has historically been associated with oral herpes, current figures show that about half of new genital infections (once attributable almost exclusively to HSV-2, a similar yet distinct strain) are now caused by type 1, says Leone. Oral herpes, meanwhile, is common, affecting between one-half to two-thirds of the American population. In other words, Dan's blood test might have detected an oral infection just as easily as a genital one.
Based on blood work alone, the doctor couldn't confirm if Dan's infection was new, if he had acquired it from me some time ago, or if he'd had it before he'd even met me. Furthermore, Dan hadn't been tested for herpes previously. Like many people, he had mistakenly thought it was included in standard STI panels. "Patients don't really know what they should be tested for," says Terri Warren, an adult nurse practitioner who specializes in herpes simplex virus, and owner of the Westover Research Group. "They assume if they go to be tested for STDs, they'd be tested for the most common ones they'd have. But often they're not."
Herpes testing is expensive, Warren points out. And the technology itself isn't great. "There are false positives in the HSV-2 test, and the HSV-1 test misses 30 percent of infections," she explains. "The testing needs to get a whole lot better before clinicians decide to use it."
In Warren's view, herpes screening isn't always realistic or warranted. However, "you're making a big mistake if you either don't test or don't tell patients you're not testing," she says. "It's a matter of communicating what you're doing, why you're doing it, and why you're not doing it."
But not all health care providers are as informed about herpes as they should be. "Clinicians are ordering the wrong tests and don't understand the newest research," says Warren. "They only have so much bandwidth […] and I think that they probably focus on things that are more medically challenging rather than psychologically challenging like herpes is."
I have come up against this myself. On multiple occasions, doctors have told me I didn't need to know the answers to questions I asked about my health. And clinicians have rejected my requests for a type-specific blood test, claiming it wouldn't yield valuable information. Eventually I gave up; if the medical community didn't care what kind of herpes I had, who was I to argue?
"Everything starts from an accurate diagnosis," Warren maintains (and that includes checking for type when lab tests are performed, she says in The Herpes Handbook, one of her comprehensive guides to understanding herpes). "People [may need to] go beyond their provider." Unfortunately, I had capitulated to providers. As a result, when Dan's test came back, I couldn't use my own type as a clue in mapping our respective viruses.
Further testing is still an option for us, which I am interested in. But we may never know if I gave Dan herpes, and I think that's okay. Because the point of openness and honesty, of sharing our wants and our needs, hasn't been solely to prevent transmission; it was to give him ownership over that choice. To give us both choice. To prepare us for, well, this. We built our trust strong so we could be vulnerable with each other. And not just with our bodies.
* Name has been changed