'Something Extra' full transcript
ALLISON: A heads up before we begin: This episode contains a mention of sexual assault.
KELLY: Someone told me to do this, to go in the grocery store. And when you see the line you start counting people 12345, herpes, 12345, herpes, every sixth person statistically has genital herpes.
ALLISON BEHRINGER: One out of 6. That’s about 16% of the adult population in the United States who have an STD that no one wants to talk about. This episode is about facing off against that stigma again and again, and with each face off, a little more information. I’m Allison Behringer, this is Bodies. And this is Kelly’s story.
It was the mid-eighties. Kelly was in her mid-twenties and living on her own. She spent most of her time with her friends. They went to the beach, they went out dancing. And she dated a lot.
Like many young people at that age, Kelly was chasing freedom. But she was also trying to put as much distance as she could between herself and parts of her childhood.
Growing up, the messages she received from her mom and their church made it very clear:
KELLY: When you're a Christian, you don't want to like sex. Everything was unreasonable, no pleasure. Everything about your body was taboo. And then on the other hand, I had a stepfather, who’s an alcoholic, who was coming in almost every night and molesting me. My stepfather stopped molesting me when I was 11. But then he did a different type of abuse, which was just very psychological. So when I moved out, I made a commitment to myself that I wasn't going to let him ruin sex for me. And so, I had my own, like, sexual revolution. Sex is good. I like it, and I'm going to have it.
I don't know how I made sure but I was determined that I wouldn't be ashamed of having sex.
If I wanted to have sex, I had sex. And I liked it. I enjoyed it. So as time went on, I just I became more confident in sex. And I guess I had a lot of nice experiences because I became confident and enjoyed it. And when you're confident, it's just a better experience.
ALLISON: And so when a man a couple years younger started flirting with her, she flirted back. They went out for drinks.
KELLY: And I was hot to trot. I wanted, I wanted some of that young thing. And he pushed me off. And I thought, well, that's odd. But he wanted to see me again in about two weeks. So we set that up. And I saw him again in two weeks. And it was– the chemistry was there. Um. We had sex, it was great. And I hoped to see him again.
ALLISON: And then about a week to 10 days later...
KELLY: And I woke up and I had, like, itching. And I thought, “Wow, am I getting another damn yeast infection?” And I remember going to the bathroom and getting down on the cold tile with a mirror between my legs and opening up my labia to see what is this? And seeing all these white little blisters. Tons of them, tons of them. and they hurt.
ALLISON: Kelly also started feeling aches and pains and body fatigue – as if she was getting the flu.
KELLY: And then I got an appointment with an OBGYN. And he says, It's herpes. It's incurable. There's nothing I can do for you. And I thought, well, what the hell is herpes? I don't understand. I'd never heard the word.
ALLISON: Kelly went home and spent nearly a week in bed. It was summer time and she didn’t have air conditioning.
KELLY: I had the fan on, at the foot of the bed, directed at my body and trying to keep cool. I had a hard time walking. I’d have to walk down the hall with my legs far apart because I didn’t want anything rubbing.
ALLISON: What Kelly didn’t know then … is that the first herpes outbreak is usually the worst. It was 1984, so she couldn’t just google herpes. And at the time, there was no antiviral medication either.
KELLY: I wish there would have been someone that said, “Stay hydrated,” or “Put a wet rag on my head.” Go, “It's gonna be okay,” and hold my hand. Oh my god, I was so freaking alone. Other than my best friend who I called, there was no one else to tell, I wouldn't tell my mom. I would be ashamed. And it would be shameful to tell her that and I would have to admit that I'm having sex.
ALLISON: As much as Kelly had tried to leave behind the conservative values of her family, a little voice inside of her was telling her that herpes was the punishment for having sex outside of marriages; it was something that happens to bad people.
KELLY: Getting herpes, you know, it was kind of – it was like a slap in the face. Hey, wake up. Your mom was right. I remember that the guy who I got it from started calling me. And back then, I had a voicemail that would play out over speaker. And I wouldn't answer it. And he kept calling over and over and over what’s wrong – and he got more frantic, what's wrong, what's wrong, there's got to be something wrong, why aren’t you answering. And I think he knew that he must have given it to me. I never wanted to speak to him again.
ALLISON: Kelly was angry at him for a lot of reasons. She was angry at him for the pain. She was angry at him for not being honest with her. And she was angry at him most of all, because Kelly was sure that no one would ever accept her now that she had herpes. She was afraid that she’d never have another boyfriend, that no one would ever marry her, that she’d never even get to have kids.
Laying in bed, fan blowing between her legs, Kelly kept thinking about Dave. Dave was another person that she was dating at the time. By the way – we’re using a pseudonym for Dave. And for the other men you’ll hear named later in this episode. So, Kelly realized it was possible that she’d given it to Dave. She really didn’t wanna tell him, but in her mind, she had no choice. Once she was well enough, she got in her car and drove over to his place.
KELLY: And I told him, I have something to tell you. I just found out I have herpes. I said I don't even know everything about it. But there's a chance I may have given it to you. I don't know, but I will do anything to help you if I’ve given it to you. He just looked at me and he goes, “Don't worry. We'll just take this one day at a time.” I was so relieved. Oh, my God, I was so relieved. And so here was this lovely man, a good man that wanted to continue seeing me and I felt I had no other option.
I thought, this is the one chance I have to have love, to have all those things that I wanted a home and kids, and it was a lifeline. You know, it's – someone threw out a lifeline to me, and I grabbed it. I wasn't letting go.
ALLISON: Kelly climbed aboard Dave’s ship. It was comfortable and safe, especially in that first year with herpes when she was having outbreaks every ten days.
There wasn’t much to do besides spend time at home. They had sex only occasionally. Partially, because of the outbreaks, AND also because according to Kelly, Dave just wasn’t a very sexual person. But she was willing to accept this part of Dave… and other incompatibilities.
KELLY: He wasn't the best match for me. And as time went on, I realized that I thought, you know, really, the reason I married him is because he was the first person that accepted me and I thought no one else is gonna love me. By the time I did marry him, I was in love with him. But it wasn't the best match, if that makes sense.
ALLISON: Two years after Kelly’s first outbreak, they got married. Two years later, they had their first son. At this point, herpes wasn’t much of an issue for Kelly, in terms of physical symptoms. For two main reasons: One, because over time, a person’s outbreaks typically become less severe and less frequent. And two, around this time in the mid-eighties, oral antivirals for herpes came onto the market and became available to Kelly. Taking this medicine was a game changer for her — it reduced her symptoms even more. Today, when people get diagnosed with herpes, they’re able to get antivirals right away and avoid a lot of the pain that Kelly had in her first year. Herpes wasn’t on her mind very much.
KELLY: It quickly, especially once I got pregnant faded into the background, we were in the mode of let's get pregnant, let's get pregnant.
ALLISON: They bought a house, they painted the walls, they fixed up the yard. They had another son,
KELLY: And it was a really good time in the marriage.
ALLISON: A really good time with one catch: Even as her outbreaks became more and more rare, Kelly and Dave still only seldom had sex. Dave just didn’t seem that interested.
KELLY: So when he wasn't around, I masturbated a lot because I have a high sex drive.
ALLISON: She tried everything she could think of to inspire a sexual connection with Dave, but it wasn’t working. Like one evening, after the kids went to bed, Kelly and Dave were sitting out the couch watching TV. Kelly scooted herself closer to him… she felt him stiffen. She thought, lemme try to be proactive here. And she just asked him:
KELLY: Do you want a blowjob? I can give you a blowjob. I'll do what you know, what do you what would make you want sex? And he told me: you’re reading too many books. I got this person who's kind of chunking away at that – cutting slices off of my self worth and my self esteem. And I thought, well, this is not going to work. I would rather be divorced than live in this marriage. Because I've never felt more alone in my life than I did then.
ALLISON: She felt herself growing, but the marriage was keeping her small. And becoming more of herself meant becoming less compatible with Dave. Kelly didn’t want to be IN the marriage, but was afraid of what it would be like to be OUT of the marriage. She’d have to start thinking about herpes again.
KELLY: I'd be starting all over again. I wasn't sure if I could find someone. I dunno, you know, it's hard enough to find someone without dealing with herpes.
ALLISON: And then...they got an internet connection. It was the late 90s. Kelly would log on, searching for more information about Herpes, thinking maybe there was some cure out there she could get and then she could date and never have to talk about herpes again. She didn’t find a cure, but she found a lot of information. AND, a website: Meeting People with Herpes.com, it had all kinds of chat rooms--some for making friends, some for discussing how to manage symptoms and others for dating...dating where she didn’t HAVE to tell them, because they ALL had herpes.
KELLY: Once I found those groups, I realized there was hope for something much more than I had thought there would be. Hope for romance, a chance for love again. I didn't have to spend the rest of my life cloistered with herpes.
ALLISON: Sex is rarely the sole reason that a relationship breaks down. But in many relationships, sex takes on emblematic properties – and becomes the place where other frustrations, grievances, incompatibilities and hurt are on full display. This was the case for Kelly. And so about 10 years into their marriage, around 40 years old, Kelly asked for a divorce.
She started spending more time in the online herpes communities. She also found some herpes groups on a new website called Meetup. The herpes meetup group in her area hosted parties every couple months. And after buying and trying on all kinds of new outfits, Kelly decided to go. On her way to her first party, Kelly was nervous.
KELLY: I checked, make sure that my mascara wasn’t all smeared under my eyes, and I didn't have a big glob of lipstick on my teeth.
ALLISON: Kelly walked in the front door, and looked around the large open room. It was like a party scene from a movie. Everyone was laughing. The lighting was perfect.
KELLY: These were people from all walks of life. All ages, professionals, blue collar, down on their luck. I mean, it was just, and we were all there. We all had herpes.
ALLISON: That first night, she was just taking it all in, putting faces to user names. The second time she went, she spotted someone across the room.
KELLY: Tall. Nice head of hair. I was just immediately attracted to him.
ALLISON: She went up to him and started talking. They kept talking throughout the night.
KELLY: And I remember he walked me to my car, and he, you know, gave me a better than chaste kiss, but not tongue. And I thought, oh my god, I'm gonna get laid, I think I think I'm gonna get laid.
ALLISON: They arranged a date. They went out for dinner and drinks. Afterwards, they went back to his house.
KELLY: We took a long time getting our clothes off, and we just did good old fashioned make out and grindin’ around. And when we finally got our clothes off, he thought I was beautiful. He liked my body. It was so wonderful.
When you're having sex with someone and that first time when it's so exciting, and you don't know exactly what it's going to feel like but you're pretty sure it's gonna feel really great.
And then when you experience it, it feels much better than you even imagined. And the orgasm is something that almost gives you a headache, it's so strong. And then he does it again. It was like, holy smoke, I've hit the jackpot.
ALLISON: They went out a couple more times, had more sex and then just became friends. She made a lot of friends, lifelong friends, during this time.
KELLY: I probably have more of a social life through those parties and those websites than I ever did before … So not only was I coming out of a marriage, where we'd stop doing things together, there was this opportunity to go hiking, and go to parties. I don't know what I would have done without those groups, without that example of, it's not killing us. It's not killing our social life. It's not killing our intimate life. Everything is possible now.
ALLISON: The source of many of these romantic possibilities was Kelly’s favorite website: Meeting people with Herpes dot com, or, as the more discrete website heading read: “Meeting People with H”.
KELLY: So I would get on there while I was looking for dates, trolling for dates. And my oldest son, he would keep going by, and as soon as I saw him I’d go to another page, try to get out real fast.
So finally, one day he says, “Mom, I don't understand why are you so weird about dating?” And I said, “I don't – what are you talking about?” And he was like, “Why will you only meet people whose first name starts with H?”
And I just – I looked at him, I go, “What are you talking about?” He goes, “You know, meeting people with H.”
ALLISON: Her sons were 10 and 11 at the time. Kelly wasn’t completely sure if they were old enough to get a talk about STDs, but she’d spent so much energy trying to hide the fact that she had herpes from them, that she just decided to be honest. She decided they were old enough to hear the truth.
KELLY: And so, okay, sit down, I want to tell you something, And so I told them that I had herpes, and what it was.
And then they said, “Are you okay, can we help you? Does it hurt right now?” You know, I said, “No, no, no, I'm fine. Right now I have medicine that helps me not get, you know, those blisters. And that works a lot and I'm okay, I'm doing very good. But I want you to be aware of these things. Because if I had a choice for you, I would choose that you not get any STD. So you need to know that they exist and how you get them.”
Part of the conversation was, all kinds of people get herpes. I said, “Doctors get it. Truck drivers, you know, your teacher might have it. It's not something you want, but it doesn't say anything about the person.” And I said, “Okay, are we good?” “Yeah, we're good. Can we have ice cream?” “Yeah, you can have as much as you damn want tonight!”
ALLISON: The tricky thing about these herpes-only dating sites is that it only captures
a small fraction of people who have genital herpes. Most people who have it are asymptomatic – in other words, they never get any herpes sores. Or, their outbreak is so small, they think it's something else. In both of these instances, you can still pass it on to a partner.
The reason that many people who have herpes don’t know it, is that genital herpes is not included in a typical STD/STI screening. This is partially because most of the affordable tests are inaccurate AND because herpes is an STI that--except in rare cases-- doesn’t actually have any medical complications or long term PHYSICAL consequences — unlike say Chlamydia, which can cause infertility, or HIV.
With herpes, the most terrible symptom is the social stigma and so doctors don't wanna put people in a tailspin over a condition that won’t impact their physical health and that may never even surface.
And so there are some people who are critical of these “H-only” dating sites like Meeting People With Herpes or Positive Singles. They say it perpetuates the idea that people with herpes shouldn’t date people without herpes. Their thought is: why create something that reinforces the stigma? Why can't people with herpes date people without it?
But for Kelly, these sites and this community were a safe landing spot after the divorce. It helped normalize herpes for her. It was also the launch pad for going outside of the herpes-only dating sites. Her friends would tell her:
KELLY: You can't let this be the focus of your life. You can't define yourself as a person with herpes. Herpes is a very small part of who you are. So don't be embarrassed and learn how to disclose to people. Don't just limit yourself to people who have herpes, because that's a really small dating pool, people who admit they have herpes.
ALLISON: Though the herpes community, Kelly learned that taking antiviral medication, using condoms and not having from sex during outbreaks, signficantly reduces the risk of transmission. Studies show that doing all three of these things at the same time can cut transmission risk to around 2%
She started dating people outside of the herpes community. And she started telling them she had herpes. It was going well. And then she met Doug, on a general dating site.
KELLY: And he was highly intelligent, and kind. And I could tell he really liked me. He had this beautiful voice. Sometimes just randomly, he'd call up and sing to me in this, you know, baritone voice. And gosh, darn. And I really adored him. But I always kept him at bay.
ALLISON: Kelly wanted to have sex with Doug, but she didn’t dare let it go there. Because ...despite her mantras of self worth and commitment to disclosure, she was too scared to tell him the truth about herself.
One evening, he came over for dinner. Afterwards, she walked him out to his car. And when she came back in, she saw that he left a letter for her on the couch.
KELLY: Oh, what is this, and and then I read it.
It says you're so beautiful. And you're one of those women who has no idea how beautiful they are. And I just sat there for a long time. I read it over and over again. It was just so lovely. When you realize that someone has such high regard for you, honest, pure, high regard.
And I thought, “I can't tell him. I can't ruin this picture of me.”
ALLISON: And so Kelly didn’t say a word about the letter. She just pretended it didn’t exist.
A few weeks later, Doug invited her to be his date to a wedding. He told her that he had gotten a hotel room and that she was welcome to stay with him. This was clearly his big post love letter move.
KELLY: I thought that this would be so easy if I didn't have herpes this time. And you know, this is in the middle of my big revolution of disclosing and, and feeling comfortable with it and not being ashamed of having herpes. But he was higher stakes to me, I didn't want to lose him out of my life.
ALLISON: Kelly wanted to tell Doug that she had herpes and then get to spend a glorious night with him in his hotel room. She wanted that but –
KELLY: I – I just chickened out. And I could tell he was disappointed when I said “No, I need to get home.”
ALLISON: That night was the last time they went on a date. But they stayed friends. And every December, he would call Kelly on Christmas and sing carols to her.
Years later, Kelly was spending Christmas with her teenage sons. She was single at the time, in her mid-40s. And Kelly got her annual christmas call from Doug and after the carols and the catch up, he asked her,
KELLY: Remember that letter I wrote you?
I said, Yeah, I, I'm sorry, I didn't respond.
He goes, that really hurt me. I can't believe that you didn't respond. He said, Why didn't you respond?
I said, Well, the reason I didn't respond is because I have herpes. And I didn't want to tell you, I didn't think you would see me after that.
And so there's just this dead silence.
And then when he starts talking to me, again, he's obviously very angry. Says, I really, really wish you would have let me make that decision for myself. Because do you really think that I would let something as small as that get in the way of a relationship with you?
You know and I apologized, I'm sorry, I just – but he had already started dating someone.
And he says, Well, you know, I wish I would have had that chance. He goes, Now I'm dating someone. I like her. And I said well, that's good. I'm happy for you.
ALLISON: After they said goodbye and hung up the phone, Kelly sat there, wondering what it would have been like if they had had a relationship.
KELLY: I thought, I’m not going to let this happen to me again. I'm just gonna go out there. And I'm going to disclose.
ALLISON: We’ll be right back, after these messages.
ALLISON: After that conversation with Doug, Kelly developed a sort of protocol for herself for dating people outside of the herpes positive community.
KELLY: I always told them between the second and the third date. I hadn't slept with them. But I knew that was coming. I was really wanting it to come. But I needed to make sure that they had the option of not taking the risk. I had to give them consent, yes, I consent to take the risk of– I can potentially have herpes, or no, I don't want to take that risk.
That was what was ethical for me.
And then as time went on, I found that disclosing in person, for me, sometimes was not the best way, because sometimes they were absolutely shocked. So I started doing it by email.
And I like that, because it gave them a chance to consider to not make me feel bad, because you know, at first, and also, it also gave me a chance to give them some resources to look up if they were interested in like always, like, The Herpes Handbook by Terri Warren is just a great, great resource.
ALLISON: Even in this new age WITH the internet, she found that people were not educated about herpes. At all. But once she sent over her go-to guides to potential partners... only one person responded cruelly. Some told her thanks, but no. But most of the time, they said “Yes!”
KELLY: And at this point in my life, I was no longer desperate to date anybody. You had to be someone who would be good for my life, in whatever capacity.
ALLISON: Then she took things a step further. Why not use the herpes as a way to make her stand out? She made a personals ad on Craigslist.
KELLY: I'm thinking, well, I've been on MPWH, meeting people with herpes, for the longest time. I'm becoming stale, like I'm a stale house listing there.
So my title was, The girl with something extra. I do all my stuff. And by the way, my extra is I have genital herpes. I got so many responses to that. I got responses from guys that said, You know, I don't have it. But I'm so impressed that you were so open about it and honest, I'd like to talk to you.
And then some said, you know, I'm impressed. I appreciate it. I'm not interested, but I thought I wanted to encourage you.
And then there were guys that from the herpes websites who go, “Kelly is that you? This is a great ad.”
ALLISON: Her late 40s gave way to her 50s. She dated people with herpes and people without herpes--it was about a 50/50 ratio during her 15 year dating “career,” as she calls it.
Over the course of the decade and a half, she had only a handful of outbreaks and they only lasted a day or two. She didn’t think about herpes anymore unless she was disclosing to a new partner.
Kelly made her world BIG. It was as if she was 26 again, but with the wisdom of half a century.
KELLY: I was back almost, but with more – with more than I was in my early 20s when I was dating, I dated with a lot of confidence, and I was thinking, I've got a really fantastic job, I've got a condo, my kids are growing up healthy, and I really don't need to get married again, I've, I seem to be able to find sex as much as I needed or I have boyfriends. I was– I felt very content with my life.
ALLISON: And then, when she was 56 years old, she went on a date with a man she met on a herpes dating site. His name was Mike, and the moment she saw him,
KELLY: It felt like someone punched me in the heart. I went “Oh! I think that's my guy.” So we're walking along and we’re laughing and having a great time and I looked at him. I go, Mike, I like you. I know you like me. Let's hold hands.
ALLISON: Five years later, in 2019, they got married.
If we could imagine a world where we talked about sex as a source of pleasure and a natural part of the human experience … getting a herpes diagnosis might be like getting chicken pox or poison ivy. Just another sometimes pesky but completely manageable skin condition.
But that’s not the world we live in. As sex educator Jenelle Marie Pierce told me: shame about STIs and STDs come from shame about sex.
Thinking about Kelly, I see how every time she sought pleasure, every time she communicated, every moment she learned, she was chipping away at that shame – shame about sex and shame about herpes. In its place, building a new, more colorful perspective about sexuality and desire.
KELLY: You know, after all this time, herpes and divorce and Lalalala. I'm living my best life and I'm an old gal now. I'm having the best sex of my life.
If this is your first time listening, I wanna invite you to join the Bodies Podcast Facebook Group. Nothing is off the table, and everyone is welcome. It’s a place where you can share your reactions to episodes, ask for doctor recommendations, or find support for a health challenge you’re going through.
For a link to the Bodies podcast facebook group, as well as episode transcripts and resources on herpes and STDs, go to KCRW.com/Bodies.
You can follow Bodies on Twitter and instagram at @bodiespodcast.
I’m on twitter at @albtweetin -- A L B T W E E T I N and on instagram @ a l b 19 19
This episode was written and produced by me, Allison Behringer. Hannah Harris Green is our producer. Kalaisha Totty is our associate producer. Rebecca Mooney is our managing producer and Nisha Venkat is with us as KCRW’s USC Luminary fellow.
Story editing this episode by Sharon Mashihi. Advising and editorial support from Cassius Adair, Kristen Lepore and KalaLea.
Original score by Dara Hirsch. Mixing by Teeny Lieberson.
Special thanks to Caitlin Pierce and Camila Kerwin.
Episode art by Neka King. Cover art by Sarah Bachman.
Bodies is supported and distributed by KCRW. Special thanks to the whole KCRW team.
Thanks for listening. See you in two weeks.