The Power and Pitfalls of STI Statistics: Understanding HSV-1 and HSV-2
I believe in the normalizing power of statistics. I believe in accumulating knowledge to make informed sexual decisions for ourselves, and to share with our partners. But I also see how easy it is to become obsessed with statistics after one’s diagnosis and how that connects to stigma.
Hear me out.
I shared this story in my latest AMA (which is now in my highlights): A few months back I created a post on HSV-2 transmission rates. Effectiveness from barriers, to body parts, to antivirals. From an extensive source list, to acknowledging who and what was missing in the research presented within the tables. Ever since that post, my comments, email inbox, and DMs (hi! please respect my DM boundary!) have been flooding with the same question.
“Hi! I have HSV-1. Can you make this for HSV-1? It would be really helpful to know. Thanks.”
“Hi this is nice but what about HSV-1? I’ve searched the internet and your page and I can’t find anything?”
“When are you going to make one for HSV-1?”
“What about HSV-1?”
At this point, I am also asking, “What is it about HSV-1?” What is the urgency, the persistence, and why does the absence of transmission statistics (on my page and the internet) matter to so many folks?
Herpes transmission is mostly seen through a partnered lens, as is one’s worth post-diagnosis (Who will love me? Who will have sex with me?). Yes, there is such a thing as self-inoculation, however, when most people are in the depths of their post-diagnosis internet searches, they’re looking for how it happened & the likelihood of transmission. Because that set of statistics is the set that matters to potential partners.
It’s not only about the odds of transmission, it’s about the odds of acceptance.
For me, statistics have always been a pathway to normalizing conversations around STIs. They’re a way to provide partners with more accurate research and resources so that they can make a more informed decision.
The reality is, you can’t just give someone a statistic and leave it there. More than likely, they have questions. They might have doubts, resistance, and fear—likely thanks to a less than comprehensive sex education experience.
There’s still stigma buried beneath the statistics. “What are the odds they’ll get herpes from me?” “What are the odds that I’ll get herpes from this partner?” Part of that is a healthy curiosity, but there is also palpable fear present. No matter what the data says, there will always be outliers—in life, in love, and in herpes. Research can only prove so much of a story, and there are never any absolutes or guarantees. There’s still work to be done beyond the existing data and literature, too.
Data on HSV-1 transmission is not as robust as data on HSV-2 transmission. Similarly, much of the existing data involves heterosexual, monogamous couples. At this time, I don’t have the representative data involving barrier methods, antivirals, and communication that can pack neatly into an Instagram graphic.
The uptick in my HSV-1 transmission content requests held me in reflection of a deeper meaning. With that in mind, my reflective, Carrie Bradshaw-esque questioning sounds something like this: “These might be the rates of HSV-2 transmission, but do the odds really matter in the grand scheme of stigma?” If herpes really isn’t a big deal as society says, if we really accepted its normalcy in society (because most people have it and just don’t know), how would our interpretation change? How would we calculate the odds? Would they even need calculation?
Transmission rates are often the statistics people with herpes use in hopes of easing potential partners’ fears to engage sexually with them. I get it. It’s digestible. It makes people step back and say, “Really? That’s it?” It’s educational and informative. It also makes people uncomfortable. It rattles their ego. It forces them to shift what are likely lifelong perceptions and beliefs about people with herpes, and herpes itself.
Statistics alone don’t resolve stigma, and one’s response to these statistics can often reveal what stigma remains.