Anita Rao
There is no scarier place to be vulnerable than in the bedroom — expressing our likes, dislikes, boundaries and limitations all while trying to stay in the moment. But conversations outside the bedroom about sex are a close second — discussing sexual history, sexual trauma and sexual health...opening yourself up to a lot of questions, concerns and judgments.
And this is why God made friends — friends you can count on to walk you through a trial run of uncomfortable conversations. Because what happens in book club or wine club — or book club where wine is the central focus — happens in a safe space. At least, that's been my experience. It was in one of these small circles that I was first introduced to the complicated dynamics of a herpes diagnosis. It's an STI that is incredibly common and especially stigmatized, but it doesn't have to be. Which is why it's on all of us to learn more about all bodies, including those that aren't our own.
This is Embodied, I'm Anita Rao.
I don't know about y'all, but my high school sex ed class did a terrible job talking about herpes. I didn't walk away with much knowledge, but the takeaways I did have conjured doom and gloom and left me with the notion that herpes was a life-long curse of painful blisters and a bad sex life.
These are similar to the assumptions Ella Dawson had as a young adult. Ella was just shy of her 21st birthday when she woke up with an outbreak of genital herpes. At first, she thought maybe this was shaving gone wrong. But then she started to wonder if it was something more sinister...and took her concerns to the student health clinic on her college campus.
Ella Dawson
The doctors there were very kind but said: You know, this is absolutely herpetic. Welcome to the secret society.
Anita Rao
This secret society is larger than you might think. An estimated one in eight people in the US carries the strand of herpes virus that most commonly causes genital herpes.
But so many of us still know so little about it... and that's where the fears and misconceptions come in. We quickly fill in the blanks with what we've heard about the STI. Ella Dawson is now a sex and culture critic. Understanding her diagnosis was not just an education, it was an emotional journey.
Ella Dawson
It was a traumatic experience. Even though I received such good care, a herpes diagnosis can throw you into such an identity crisis, because I had spent my entire life absorbing all of these horrible stereotypes about the type of person who got STIs. I struggled with insecurity and confusion and guilt and embarrassment. And it was incredibly disruptive. And it absolutely ruined my 21st birthday.
There are a lot of stereotypes that we learn through sex education, or just from pop culture, that the type of person who gets an STI, especially herpes, is someone who has been reckless. Someone who is irresponsible and selfish. Usually we associate it with infidelity and deception. So there's this real sense that if you have an STI, you have some kind of moral failing.
Anita Rao
Maybe you could tell us a bit about the process of uncovering how the virus manifests in your own body, and learning how to manage that.
Ella Dawson
It took me a long time and the help of some wonderful, supportive partners, as well as just educating myself to understand that the virus lives in my body and my body is still me and the virus is just one part of my body. I also get sinus infections, and I don't judge my nose for being useless.
Anita Rao
Time for a little sex-ed booster... because I know we all could use it! There are eight types of the herpes virus that affect humans, and two that are relevant to our sexual health: Herpes Simplex Virus Type 1 and Herpes Simplex Type 2. The odds that we've come into contact with one or both of them are fairly high. Both strands of the virus can cause oral and genital herpes, but there are some big differences between the two virus types. About 12% of US adults have HSV-2. It's the most common cause of genital herpes and can lead to a higher frequency of outbreaks.
HSV-1, on the other hand, most often leads to oral herpes, and more than 50% of US adults carry the virus. So why aren't we all constantly walking around with cold sores or painful blisters? That's because the majority of people with either type of HSV show no symptoms or only mild ones. And though outbreaks can be painful, recurrent episodes are often shorter, less severe, and more infrequent over time.
Considering all the bad info I and so many others left school with, I think we deserve a little expert insight now...
Peter Leone
Before we had culture and PCR tests where you could check for the DNA of the virus or even blood tests that will allow us to detect antibodies, it was a visual diagnosis. So it required someone coming in with lesions and someone being able to look at it and say: That's herpes.
Anita Rao
Peter Leone is a professor of medicine in the department of infectious diseases at UNC Chapel Hill. And he told me that our medical knowledge about how to diagnose and treat herpes is still evolving.
Peter Leone
We then had cultures. The cultures were relatively insensitive and weren't being done on people who did not have sores or lesions at the time that they presented. As a result, people think that if they don't have, you know, sores, and painful blisters, that they don't have herpes. It's really a misnomer.
Anita Rao
Should we all get tested? I mean, it's not a part of a normal STI testing battery. So it's something you would have to ask for independently. But do you recommend that people err on the side of doing that, because they may be walking around and passing it to other people without knowing it?
Peter Leone
We've had a lot of debate about this. I've been on the CDC STD treatment guidelines in the past, and we could never get agreement from them on making this a routine part of STI screening. I do think it's a good idea to get screened for herpes. Certainly, as you age up, the prevalence rate goes up. But that also means that your partner should know their status. So I just think that it levels the playing field to say: Look, we're going to be responsible: get an HIV test. Get tested for gonorrhea, chlamydia, syphilis, and we're going to get a herpes blood test.
Anita Rao
So how are people treated who do have herpes? What can they do to reduce the risk of transmission once they know that they have a positive diagnosis?
Peter Leone
Well, there are several things that you can do that actually do have an impact on reducing transmission and controlling disease, so the frequency of outbreaks. So one of the first things to do actually is to disclose your status. And I think it's important for a lot of reasons, both in terms of reducing stigma, but also for whatever reason, disclosing that you have genital herpes actually does seem to reduce the risk of transmitting it to a partner, even though there aren't any changes that we know of in sexual activities or use of condoms with that sort of disclosure.
Anita Rao
Other useful facts I learned from Peter — using condoms and not having sex during an active outbreak can help reduce the risk of herpes transmission. If you have HSV-2, you can also take a daily medication to prevent outbreaks.
Now, knowing your status and how to treat it is one step. But deciding how and when to talk about it...that is a whole other thing.
Understandably, some people keep their status private outside their romantic partnerships. Ella, who you met earlier, took a different approach and shared her diagnosis with the world. Two years after learning her status, she gave a TEDX talk in Connecticut. It's been watched more than 750,000 times.
Ella Dawson
It's very strange being a public figure associated with herpes. It's always funny when somebody Googles my name and then it suggests Ella Dawson herpes to complete your search. It's definitely odd. I decided to become more public about having herpes, because when I was diagnosed, all I really wanted was to see other people's real life experiences. I wanted people to relate to who weren't anonymous and who were like me, so that I had role models and felt less alone. And it's been certainly odd to have job interviews where someone Googles me or to have a boyfriend's parents Google me. And there are occasionally people who kind of cringe and go: Ew, that's disgusting. And I've certainly had moments where I've had to stand up for myself in awkward social situations. But in general, people are really gracious and grateful, because it is, it's this huge void in our conversation about health.
Anita Rao
Being afraid of disclosing can really prevent people from having healthy and safe relationships. And it's even led to some interesting things on the internet like herpes-exclusive dating sites. So I'm curious to have you talk a bit about that and kind of what has emerged from the fact that so many people are afraid to disclose because they don't know how people are going to react?
Ella Dawson
Yeah, you're putting yourself in a vulnerable position when you tell someone: Hey, this is a part of my life. And I feel shame around it — even if you know that shame is illogical — those feelings are still so powerful. And it's led to the creation of STI dating sites and dating apps. And I can understand the appeal that they have for folks who really struggle with disclosing. The idea of just having it not even be an issue. But at the same time, I personally don't use those sites. I worry that they benefit from stigma and reinforce the stigma because it encourages folks with STIs to self segregate a little bit away from the general population. And for folks who don't have STIs who see the existence of those sites, it underlines for them that folks who have STIs are not dateable.
Anita Rao
I know one of the most common reasons people land on your site on Google is they are googling: Should I date someone with herpes? So I mean, what is your approach to disclosing your status? And and what are those conversations like for you?
Ella Dawson
When I was first dating as a newly diagnosed person, my approach was to get it out of the way early, mostly because I'm kind of a loud mouth person, and I blurt out whatever is troubling me. And I actually really loved that approach because it saves me the awkwardness and the heartbreak of becoming really invested in someone and then having them change their mind. But I also found that when I approached the conversation from a place of curiosity and passion of: I have this virus. It's not really a big deal. It's really strange how socially stigmatized it is. And I brought an energy of excitement and not shame, I received a much better response from the person that I was disclosing to. And I think a lot of folks with herpes are dreadfully afraid of rejection. And as a result can drag out disclosing or avoid it, or when they finally do disclose, they might apologize or frame it as this awful secret and this awful baggage that they're bringing to the relationship. And then that energy of shame and fear is mirrored by the person you're speaking to, who then sees it as this big scary thing and this potential deal breaker because that's how you framed it. The advice that I usually give to folks who are newly diagnosed or who are dating for the first time is: Don't be afraid, and don't apologize. Bcause this is just part of your life. It's just part of who you are. And at the end of the day, you are an amazing, well rounded person. And this one piece of your life shouldn't be a reflection of everything that you bring to the relationship.
Anita Rao
Ella's takeaways on herpes are the exact opposite of what we're fed culturally about the virus. In 2020, the cast of SNL and late night host Jimmy Kimmel jumped on the already-packed bandwagon of comedians who make herpes jokes and perpetuate the stigma that herpes is the sexual health bogeyman.
The reality is if you don't have herpes yourself, chances are, you know someone who does. I've had so many conversations with friends about herpes over the years, and I recently called up one of them to talk more about her experience. She asked to remain anonymous for the show to protect her health privacy. And then we talked about all the change she hopes to see in our cultural conversations about herpes.
Anita's Friend
Okay, all right, I'm rolling. We have tons of power.
Anita Rao
Tons of power. Tons of juice. Good. Okay, I'd love to I guess to start our conversation by talking a bit about disclosure. Tell me about how your like journey with disclosure has evolved over the years — from the beginning when you first got your diagnosis, how you were talking about it with loved ones, and specifically with partners at that time, to kind of where you are today — how have things evolved for you?
Anita's Friend
When I got diagnosed, it was like a really traumatic event, like the situation and the relationship that I was in. It was all just like, really, really bad. And so there was at the time for me no way to like not read my diagnosis as if it was some kind of punishment for my poor judgment and low self esteem. And there was no way for me to really talk about my diagnosis with sexual partners without also telling them the story of my horrible breakup. But that wasn't necessarily the information that was important for that person at that point in time.
Anita Rao
So what did you kind of come to think like was important to say and what was not. Like versus feeling the pressure to like divulge everything? How did you kind of walk that line between doing what felt comfortable to you, but not like sharing in a way that made you feel overexposed?
Anita's Friend
It became much more about kind of listening to them and thinking about what if I was in this situation? What would it be important for me to hear and kind of starting to speak from that perspective, as opposed to like: Oh, thank you, you're someone I can tell my story to, and just kind of trauma vomiting all over them. It became more about well, okay, we're gonna take this step, and I need to initiate this conversation with you. So, you know, I'm going to start off with a couple points, but then I just shut up. And I'm like: What are your questions? But I do always say: Please don't just go home and Google it. Like, ask me to send you links. Because it's easy to get misinformation out there.
Anita Rao
Totally. Like, what are some of the best reactions that you've gotten?
Anita's Friend
The affirmative ones. The ones that are like: Okay, well, I have some questions, but I'm still interested in you. The very best thing that ever — the best thing that anyone ever said was — you know, I was all nervous and like: Okay, okay, I have to tell you something, and I have herpes. And he was like: Okay, well, I trust you to tell me what is the most safe and fun. And then we had like, amazing sex. So that was the best reaction.
Anita Rao
When you started talking about it more openly with friends. What was that like? Like did you find helpful advice that you got from people? Or did it feel, because I mean, it's less of a ... there's less of a need to know when you're talking to friends about it. So I'm curious about kind of what inspired talking about it more openly and what it was like to get that reaction
Anita's Friend
Talking to friends about it is like the best thing. You can fall down these Google holes and negative spiral thought patterns about your self image and your worth and your desirability. And going to the circle of women usually that, you know, have gone through this or have resources or even insight is, is just the best. Like talking to other people — talking to doctors and talking to friends just gave me more information about something that I really didn't have a lot of actual information about — just kind of rumors and impressions and like cultural fears. There's the popular online news article that's like comes up right at the top of search results about what to do if you have herpes. And the conclusion of the article is abstinence is the only way to like, you know, have safe sex with herpes, abstinence. And it's just like, really?
Anita Rao
What kind of change would you like to see in how it is talked about?
Anita's Friend
Yeah, I guess the change I would like to see is this moment of like disclosing to a partner. Ninety-nine percent of the time, I'm the first person to ever tell them this, or to just like, bring up STD, STI, whatever status, like before having sex. And definitely there's like a timing question that can be worked out with practice or whatever. But like, it's such a burden on me to do that. If I could wish for one thing to be different. I would want that conversation to just be so much more natural.
Anita Rao
The TLDR of that conversation: Don't ghost on people who open up to you. You may miss out on getting to know one of the coolest people ever.
If any of the phrases we've been using like asymptomatic carriers, positive diagnosis or getting tested, feel familiar. That connection has not been lost on me either. We've all had endless conversations about the Coronavirus at this point, and it's changed how we navigate personal and social boundaries. Ella Dawson has seized the moment as a teachable one.
Ella Dawson
I've been having conversations about safer practices in the context of my sexual relationships with someone who has an STI. And it's been kind of fun to teach my family and my friends how to have these uncomfortable conversations about risk assessment, and how you're socializing and the choices that you're making. So, my hope is that while we don't really know yet how COVID will impact the way that we feel about STIs, that we all might learn some useful language and conversation skills that we can bring to the safer sex that we'll be having in the future.
Anita Rao
As we celebrate the brilliant scientific minds that develop the COVID vaccines under immense pressure, folks in the herpes activism community remind us that a herpes vaccine would be a game changer.
But finding one has proved challenging. After four decades of research, a vaccine still hasn't made it beyond the final stages of clinical trials. So while scientists continue that work, it's up to us to prevent and treat herpes as a community, just like we've done with the Coronavirus. And Dr. Peter Leone's observation that disclosure contributes to herpes prevention sticks with me. If we just talk about this thing we're so scared of, we can make ourselves healthier and find opportunities for more love. Not less.
My thanks to Kaia Findlay for producing this episode and Charlie Shelton-Ormand for editing. Thanks also to Weaver Street Market, a worker and consumer owned cooperative, selling organic and local food at four Triangle locations in North Carolina. Now featuring online shopping with next day pickup: weaverstreetmarket.coop.
Embodied is a production of North Carolina Public Radio WUNC, a listener supported station. If you want to lend your support to this podcast and WUNC's other shows on demand, consider a contribution at wunc.org. now. Incredible storytelling like you hear on Embodied is only possible because of listeners like you.
Lindsey Foster-Thomas is Embodied's chief evangelist, also known as WUNC's director of content. Every episode of this show sounds great because of sound engineer Jenni Lawson. And your head is bobbing right now because of Quilla, who wrote our wonderful theme music. I'm Anita Rao, on an exploration of our brains, our bodies and taking on the taboo with you.