Herpes: Symptoms and Stigma

I'm Jacob Goldstein. This is incubation on today's show Herpes.

Yeah, I became the Herpes Girl for a while, which I didn't expect, and there's some pros and cons to that. I was really delighted by how excited people were to have this conversation, but it was also very strange and like I would go back to my college campus around that time and people would be like, it's the herpes girl.

I'd be like, Hi, you've.

Heard Ella Dawson writes about sex and culture and she's also one of the billions of people billions with a bee living with herpes. We'll hear a lot more from Ella later on, but first let's do a little herpes one on one For this part of the show, I called up a herpes authority on a wault. Is it true that you're the Queen of Herpes?

Yes, that's my less formal title. Let's just say I was introduced like that about now twenty years ago, and I decided to adopt that namucher and I've been doing herpes work now for thirty years. There are not a lot of experts in this field, and I've stuck with it.

In addition to being Herpe's royalty. Anna is also a professor of epidemiology at the University of Washington, and today we're turning to Anna to explain five key things to know about herpes. By the way, Anna talks about the two types of herpes that we usually hear about, which are known as HSV one and HSV two. So thing number one to know about herpes, most people have it. How many people in the world are infected with herpes.

Well, it depends if you're talking about HSV one or HSV two. HSV one about two thirds of people in the world have HSV one infection and most of its oral, but not all. Some of it is genital, and about fourteen percent or so have genital HSV two infection.

Wow, So that's thing number one to know about herpes. Thing number two, it's really common to have herpes and not even know it.

Only about twenty percent of people who have HSV two infection, which is the main cause of genital herpes, at least historically know that they have genital herpes.

Next thing to know. Part of the reason so many people don't know they have herpes is that testing is notoriously unreliable.

The problem is that many of these essays that are now commercially available, they're not that accurate. And what's happened because the frequency of herpes has gone down, but the frequency of testing has gone up, the proportion that's actually diagnosed incorrectly has increased.

So there are a lot of false positive A lot of people get herpes tests that say they have herpes when in fact they do not.

Right, Because we have people who got tested for whatever reason for HSV two. They had a new partner, they were anxious about it, and the test came back positive for HSV two. I had somebody who didn't believe that they have it and the gynecologists tell them to go to therapy to accept it. She was subsequently tested with an accurate test and the geynecologist was wrong. Right, So we're giving people a false diagnosis.

You and your colleagues have developed a better test than the common test.

Is that right?

My colleague who was here actually before me, did develop a better test that is still available through University of Washington, but it's only available here. It's what's called the Western blot, which means that we look at the ability of the immune system to respond to a very wide range of proteins of not just one or two like the commercial assays.

The fact number four, Herpes is incurable. With lots of other viral infections, the body figures out how to eliminate the virus from the body entirely, but herpes isn't like that. Herpes has evolved to have this really clever trick that allows it to evade the human immune system.

Herpies hides in the cells of the nervous system, and the nervous system is what's called immuneprivileged site. Is that there's not a lot of immune cells there, so it is able to hide in a form that's inactive. It's called latent. It infects bundles of nerves that are along your spinal accord, and at that point it doesn't elicit much of an immune response.

And there are just kind of hangs out, not eliciting an immune response, and then comes out of hiding at some point later.

It elicits fair little immune response when it's there, and then in response to triggers that are not very well defined, it will come out and make its journey back inside the nerve all the way down to the either genital area or to the oral area, depending on whether you're talking about oral or genital herpes.

Okay, now we come to the fifth and final key herpes fact. HSV one, which has historically caused oral herpes, has in the past few decades been causing more and more cases of genital herpes.

And so they are susceptible to acquiring HSV one in an area that probably before was not susceptible because they were already infected at a different site. So now they initiate sexual activity and they could acquire a genital h's view, the other reason that people say is that people now have more oral sex. But it's very hard for me to believe that this generation invented oral sex. So I am more a believer in the fact that people are growing up without HSV one as an explanation.

Thanks to doctor Anna Wald, Queen of Herpes, when we return, we'll hear more from Ella Dawson about what it was like learning that she had herpes and what it's been like living with it. Ever since that's in just a minute. Ella Dawson is a writer. She writes a lot about sex and culture, and she has also written a fair bit about having her which turns out to be a subject that has a lot to do with both sex and culture.

So I woke up at the end of my junior year of college. I remember it was supposed to be the day of the big Spring Fling concert, uh, and I just felt peculiar.

I had some uncomfortable symptoms.

I would say I had a smattering of raised sores that were quite painful to touch around my genitals. And I think my immediate thought.

Was, are these ingrown hairs? Is this some kind of rash?

Like I wanted desperately for it to be something normal and easily treatable.

But when you google, you know.

Raised red sores herpes is pretty much the first thing that you'll see. And so, yeah, it was not fun. Herpees outbreaks, particularly your first outbreak, tend to be painful. It's not my favorite experience in the world. And like any panicked twenty year old, I went to Google and kind of typed in what I was feeling, and the

As well as very terrible.

It was not a fun day, I would say, but I got incredible medical care. And yeah, I would give it two out of five stars. I would say it's an experience.

I mean, it could be worse, given that it's a diagnosis of a disease. Any more than zero stars is okay.

Right.

So the nurse, as you probably havees a rare case, perhaps of a healthcare professional confirming a Google diagnosis. Do you have a test? Is that it?

Like?

What?

Then?

Yeah?

So she took a culture directly from a sore, and that tends to be, from my understanding, the most reliable form of herpes testing. If you are not expressing symptoms, you can take a blood test for herpes, but those

So you get the labs, they confirm that you in fact have her bees, and then what.

Hello.

I had a lot of uncomfortable conversations. Called my mom and I said, you know, I have some bad news, and she immediately asked, are you pregnant. I was like, no, no, no, no, no, I have herpes, and she goes, oh, that's fine. She was.

It was really nice.

I was so terrified and I was worried, so I appreciate that she was just unflappable and she just wanted to know that I was okay.

My parents were great.

The more difficult conversations I had to have were I had to tell the person I was dating, who was not the nicest person already and was a big jerk about it. I think his immediate concern was for himself, which is totally fair.

I also called.

Some exes just to say you know, Hey, I got diagnosed with this. I don't know if you've been tested. I don't know if you know your history. But for the most part, people were really surprised, but gracious and understanding that this is not something that anyone does maliciously.

Viruses happen.

Did What did you know about herpes when you got diagnosed or just before you got diagnosed?

Next to nothing. I think herpes in particular is a strange virus because everyone knows that herpes is a skin condition that you can get and that is incurable, and it's actually transmitted, but very few people know what the symptoms actually are, how it's actually transmitted, how to prevent it, what the testing looks like. I thought I knew a lot about it, and then I very quickly realized, oh,

And no.

Viruses are weird and they don't behave the way you expect.

So at some point you go from talking about having herpes with your friends and former partners and your family to talking about herpes in public and writing and speaking. How do you make that leap?

Oh?

Yeah, I mean in a nutshell.

What happened was I graduated college, I started writing a blog. I started writing a little bit about having herpes on that blog, and then a friend of a friend worked for women's health and said, would you like to write an article about this for SGI Awareness Month which is April? And I said sure. That was called I think it was why I love telling people, I have herpes, which is a very clicky title, and then that went extremely viral online. I was twenty two. I was completely unprepared

So you write this article it goes viral. What is life after that immediate moment as a person who is sort of internet famous for having herpes.

Yeah, I became the herpes Girl for a while, which I didn't expect, and there's some pros and cons to that. I was really delighted by how excited people were to have this commonversation and to hear from other folks who had herpes who read my work and felt very seen and understood.

But it was also very strange.

To have that suddenly become what Google suggests when you type in my name, it adds herpes at the end, And like I would go back to my college campus around that time and people be like, it's the herpes Girl. I'd be like, Hi, you've heard.

So I want to talk more broadly about herpes in popular culture, and in particular, there is this Time magazine story from all the way back in nineteen eighty two that people still talk about when they talk about herpes. And I know you've written about this particular story, so just to kind of give a flavor of it, I want to read a line from that story from that article here. It is also known as the Scourge, the

It's giving chaos. It's giving panic.

Tell me about that story and the sort of broader role it played in the public imagination of herpes.

That Time magazine story and cover are so iconic that it's got like this woman in eighty shoulder pads and a big scarlet H on it.

The H is like a New Scarlet Letter. It's an allusion to the Scarlet Letter, right.

I think that's even the title of the article. That article is the most Banana's hysterical science writing I've ever read, and they interview all these people who say crazy things about how herpes has impacted their life. Some people claim that they're willfully infecting hundreds of people because they feel bitter and they want revenge upon society.

Like it is.

It's like a Jerry Springer episode that's off the rail on it. I shouldn't even insult the late Jerry Springer like that. He would not talk about herpes like this.

It is just it's vile.

And a lot of folks point to that article as being kind of this pivot where herpes went from being something fairly normal and common to something that was incredibly stigmatized because it was it was so bombastic and like a cover of Time magazine that really impacts culture, especially in the eighties.

Like in the eighties, it was a huge deal. It's hard to think of now what would be like Taylor Swift would have to like give a speech about it or something, right like, it's hard to think of something that's as big of a deal now as that would have been then.

And even if you didn't read the article, even if you didn't pick it up, just seeing that cover, that big scarlet h stays in people's minds, And I love the framing of it being like Scourge of the Ivy League, Like there's so much in there about class and like and about race, Like it's basically saying, hey, even affluent white people, you can get this, and you should be you should be afraid, like and again like Jerry Folwell's Revenge, it's saying like, this is a consequence of us having

Besides the hangover, do you have a like second least favorite pop culture reference to herpes, or, for that matter, any pop culture references surphees that you think are actually helpful or good.

Herpies pops up all of the time in pop culture. I think s A Saturday Night Live is an interesting, interesting source text to put my academic hat on for attitudes about herpes because SNL has had some horrible herpes jokes and some great ones, even just in the last few years.

So wait, what's a great herpes joke?

This is the thing.

Herpes is like a lot of taboo topics. You can make a funny joke about them if you do it in a way that is humanizing and informed. For example, SNL did an amazing sketch about COVID nineteen. It was about a family of the COVID virus in their home and other viruses coming to visit, and like the herpes virus lived next door, and there were just really funny little bits in it that were not making fun of people who have the virus, but just making fun of the virus and how it functions.

Now, who is that?

It's your neighbors. We just wanted to out of nowhere and say hello, well this is.

A surprise, honey.

Have you met the herpes?

I haven't, actually, even though statistically I probably should have. I'm oral, and this is my wife genital, please please call me jen.

I just howled laughing at it.

It was like Bo and Yang with like a big herpes virus contraption on his head, and that made me very happy.

It's ten years later. Now, are you still the herpes girl?

I would like to think I am no longer the herpes girl. My career has taken me in different directions. I think the thing about herpes is that you run out of things to say about it. There are other people who have more interesting stories to tell. Black women are far more likely to be impacted by herpes and to face different challenges when getting the treatment they need. It can lead to or exacerbate abusive relationships. You might be kind of vulnerable to being taken advantage of because

Ella.

It's great to talk with you, and truly interesting, really interesting.

It's very fun to have a conversation about herpes.

It's not just like.

How did you get it?

Sad is.

Your life over herpes is fascinating, and I think if we bring curiosity to these conversations as opposed to judgment, we can learn so much. Thank you, so much, Thank you so much for having me on. It's been a pleasure.

Ella Dawson's debut novel will be published in twenty twenty four. It's called But How Are You Really? Thanks to my guest today, Ella Dawson and Anna Wald. Next week on our final episode of the season, a twist Viruses that actually help human beings. I'm talking about phages, bacterial phages.

Life is evolved in a soup of viruses, and most of those viruses are phages. And if a kind of alien life form was to just pluck a random bit of the Earth and look for life, they would probably find phages and nothing else.

Incubation is a co production of Pushkin Industries and Ruby Studio at iHeartMedia. It's produced by Gabriel Hunter Chang, Ariela Markowitz, and Amy Gaines McQuaid. Our editors are Julia Barton and Karen Schakerjie Mastering by Anne Pope, fact checking by Joseph Fridman. Our executive producers are Katherine Girodeau and Matt Romano. I'm Jacob Goldstein. Thanks for listening.