Yes, yes, I know you’re probably thinking: “I don’t have herpes, why should I read an article on it?” Actually, you might. By some estimates, anywhere from 60% of adult Americans to 90% of adult Americans have herpes simplex 1 (HSV-1), which most commonly manifests as cold sores.
There is not much stigma in having a cold sore, whereas the genital sores associated with herpes simplex 2 (HSV-2) can cause not only physical pain but also emotional stress around disclosure. According to the CDC, around 16% of Americans have HSV-2, but around 80% of them are unaware that they have it. So, yes, you probably should be reading about herpes in order to learn more about it, because it’s increasingly likely that you or someone in your life will come into contact with it and need some guidance.
In my post series on informed consent, I wrote about the importance of disclosing STI status before having sex with someone. But, obviously, you need to know what your status is before you can disclose it.
Enter this amazingly thorough, well-written article on dealing with a herpes diagnosis that wasn’t what it seemed to be. The author struggled with disclosing her herpes-positive status to potential sexual partners, until a blood test came back negative. Huh? It turns out that she likely has a rare form of genital HSV-1 that is invisible on blood tests, rarely sheds, and thus isn’t necessarily putting anyone at risk because it’s very difficult to transmit.
So who should be disclosing their status? Individuals like this author, who are incredibly unlikely to transmit, or individuals who have cold sores which go un-stigmatized, but who are highly likely to transmit the virus during oral sex?
I’m going to quote at length what she found by talking to some experts:
Right now, a visual diagnosis—no tests, just a “you have herpes”—is the standard route for practitioners to diagnose a herpes outbreak. The CDC endorses “visual inspection” as a valid form of diagnosis on their website. Somewhere between 60-85 percent of the time, clinicians make a correct visual diagnosis, Dr. Leone said, but that leaves a pretty big possibility that it’s something else. Patients and their doctors can confuse irritated genital symptoms like herpes, yeast infections, and allergic reactions to vaginal hygiene products, Dr. Handsfield said.
Most people wouldn’t want to take a 20 percent chance that they’ve wrongly diagnosed a lifelong disease. So why wouldn’t doctors just conduct a simple test? “They’re lazy, they’re ignorant, and they don’t like talking about sex…You sort of have a ‘don’t ask, don’t tell’ policy around herpes,” Dr. Leone said.
Wow. It’s definitely not encouraging to hear that even medical experts are maintaining the silence surrounding herpes. It’s even worse that the stigma of disclosure is thrust upon people who have a low risk of transmission, while those who are probably transmitting it the most – the folks with recurring cold sore outbreaks – aren’t being told that they should be disclosing. Perhaps the stigma for carrying an STI like herpes would be lessened if the 60-90% of the adult population with cold sores was prompted to think about whether they should disclose their status before a sexual interaction. Can something still be stigmatized when such a high percentage of the population lives with it? (I’d argue that it could be – just look at how poverty is stigmatized in the U.S. and how pervasive it remains)
Again, I’d urge people to educate themselves on the risks of sexual interactions, and to know their own STI status so that they can decide what an ethical level of disclosure is for them.