The STI Project with Jenelle Marie Pierce
In Episode 6, Erin interviews Jenelle Marie Pierce, Executive Director of the STI Project & Founder of herpes activist network HANDS. Erin and Jenelle discuss the focus of Jenelle’s work with the two organizations to destigmatize STIs and having a positive status, as well as insights on testing, and disclosing STI status in a relationship.
About This Episode
Episode 6 Transcript
The STI Project with Jenelle Marie Pierce
Erin Everett: Hey, everybody, and welcome to Exclusively Inclusive. I’m your host, Erin Everett, nurse practitioner. Today we’re going to be having a really special guest on the show, Miss Jenelle Marie Pierce, who is the executive director of the STI Project. One of her main missions is to break the stigma on STDs and STI infections. I was able to connect with Jenelle via Instagram. She has a lot of similar interests as I do and I think she has a lot to offer our listeners as far as STD education, knowledge, and ways to manage your new diagnoses, maybe communicate that with a new sexual partner, and also just breaking the stigma and not letting your STD infection define you. With that in mind, I’m going to go ahead and introduce Miss Jenelle. Jenelle, go ahead and say hi to our listeners.
Jenelle Marie Pierce: Hello. Thank you so much for having me.
Erin Everett: Excellent. We’re so happy to have you. Jenelle, why don’t you go ahead and start with telling us your full name and preferred pronouns?
Jenelle Marie Pierce: Yes. My name is Jenelle Marie Pierce and my pronouns are she, her and hers.
Erin Everett: Excellent. Obviously I’ve had time to poke around your website and all your social media platforms, but for our listeners, can you just briefly highlight any of your specialties and organizations that you represent?
Jenelle Marie Pierce: Yeah. As you mentioned, I’m the Executive Director of the STI Project. We just recently rebranded from the STD Project. For the last seven years we were under the STD acronym and now we’re the STI Project. Then also I’m the founder of the Herpes Activist Network, which is called HANDS, and that stands for Herpes Activists Networking to Dismantle Stigma. Then I’m the spokesperson for Positive Singles, which is a dating site, platform and app and support network all for folks who have been diagnosed with an STI or STD. Then I wear a couple of other hats, like I do a lot of freelance writing and media and press and such, but for the most part those are the biggest role that I play right now.
Erin Everett: Awesome. It seems that you’ve had your hands busy and full with this since about 2012, is that right?
Jenelle Marie Pierce: That’s correct. Yeah. Almost eight years I launched the STD Project then, but now it’s the STI Project, of course. I launched that in April of 2012 alongside of STD awareness month. Yeah, it’s almost been a full decade. Pretty quick here. A couple of more years. It seems like almost just yesterday, it really does. It doesn’t seem like that long.
Erin Everett: Yeah. Well when you’re doing something that you’re really passionate about, time tends to fly by.
Jenelle Marie Pierce: It’s true. I know it.
Erin Everett: Yeah, well we’re so thankful. Also if you wouldn’t mind giving us a little brief personal background. You don’t have to go into too much detail about your personal life, but any hobbies, pets or anything like that?
Jenelle Marie Pierce: I live in Asheville, North Carolina. I have herpes. That’s part of kind of the motivator behind the STI Project initially. I’m married and my partner is pretty awesome. What do I say about my partner? I don’t know. Anyways. I’m married. We’ve been married for three years and we live here with … we recently relocated to Asheville actually. I’m originally from Michigan, the high five state, the land that’s shaped like a hand, otherwise known as the Great Lake state. We have four fur babies. We have two dogs, a 75 pound pit/lab/shepherd/chow mix. She’s like a hot mess and she’s three. Then we have a two and half year old rescue who is 95 pounds and he’s a shepherd/collie mix, and they’re both giant babies. Then we have two cats as well, a long-haired and a short-haired cat and they hate each other. It’s like antics in the house all the time, plus tumbleweeds of fur balls all over the place. No matter how much I vacuum, it’s like a hot mess in this house.
Erin Everett: Oh, I’m sure.
Jenelle Marie Pierce: We have some fish. I just recently relocated, re-homed a fish because my step kids, my husband has three children and two of them brought home fair fish that they won at the fair, and this free fish grew from two inches to nine inches, and we went through three different fish tanks because she just got bigger and bigger and bigger, and kind of all along the line of what we’re talking about today, it was pretty neat because she got so big that I was able to identify her sex, and she was a she because I could she her fishy vulva, and when they get big enough, you can actually see the vulva in a fish. My step kids were like, “How do you know that it’s a she?” Who knows what sex their fish is, right? I’m like, “Well.” She did actually lay eggs at one point in time too. Of course they didn’t get fertilized, but that was pretty cool.
Erin Everett: That’s super cool.
Jenelle Marie Pierce: Anyways, I had a sexual health conversation about how you tell where her vulva is. Then they were like, “What’s a vulva,” because they have only heard vagina. It was a really awesome conversation and a good segue. There you have it. That’s a little bit of a snapshot into my life.
Erin Everett: That’s so funny how just having a fish then leads you down the trail of having sex education with your step kids.
Jenelle Marie Pierce: I know. It’s great. In my heart of hearts I feel like that’s how those conversations should go, the way in which they feel the most organic, as they just happen throughout.
Erin Everett: 100% agree.
Jenelle Marie Pierce: When things pop up, exactly.
Erin Everett: Yeah, I mean that’s what normalizes it. I know it’s a little tangent, but growing up it was so hush hush. You didn’t have those conversations. In my experience, me and my friends, I grew up in Australia, and people didn’t really talk openly about sex back then, let alone your period. Those conversations were reserved for special times when your parents maybe thought it was about to happen. I think it’s awesome that you’re having those off the cuff conversations with your kids.
Jenelle Marie Pierce: Yeah. I think it’s important. I mean I’ve had the same kind of similar background in that it was like a real conservative kind of … my parents were pretty open-minded and pretty … they talked about things probably more than even most parents did, but it’s just like nobody even said words that were related to our genitals. No one even said the word genitals. It was like hoo-hah and woo-woo and stuff like that.
Erin Everett: You’re so right.
Jenelle Marie Pierce: What? I mean this is not helpful. It doesn’t empower anyone. It makes you just feel shame right from the get go. As a little kid you’re wondering why can’t I say my boobs or my nipples, any of that?
Erin Everett: Right. Then on a more serious note now we’re learning that it helps protect kids against child predators to be more open about the actual anatomical names for your body parts.
Jenelle Marie Pierce: Oh yes. The autonomy that is afforded to children when you tell them that they are allowed to say no to hug or to a kiss from a family member or somebody who’s nearby or close or whatever, that they don’t just have to accept all touch and receive all touch. I mean all of that is huge, because it’s no wonder folks are confused when they’re forced to hug Aunt Gertrude at Christmas time and then five years later they’re in a situation where they’re uncomfortable. No wonder there’s some confusion there. No wonder there’s a lot of shame when stuff happens that folks don’t feel good about and they feel like it’s their own fault when it’s not. I mean it’s just a lack of us being consistent across the board and empowering our youth. I mean all of it. Steps off soap box.
Erin Everett: no, no, no. I totally agree with everything you’re saying. I can already tell this is going to be a fun interview. I’m in 100% agreeance with that, but of course we could talk an hour for that alone. What is one other fact about you that maybe people don’t know about? I know obviously you’re very open and honest in all your blogging and your podcasts and all your press releases, but is there anything that maybe people don’t know about you that you’d love to share?
Jenelle Marie Pierce: Yes. I’m 100% an introvert, and most people don’t read that from my conversation and when I meet people in public. I really enjoy social interaction and I love people, but that’s partially why I surround myself with animals. I recharge and recoup all my energy in nature and by myself. The majority of my time, it sounds kind of glamorous, like, “Oh, I’m a sexual health educator and I run this website and I do all these interviews and things like that,” and I’ve been in some big media outlets that people are like, “Wow, that’s just so awesome, and you’re famous,” or friends of mine say that because they don’t know anybody else who’s ever been interviewed by Cosmo for example, or something. It sounds really frou-frou and fancy and things, but the vast majority of my day, just like today, I’m sitting in the clothes that I slept in last night, I haven’t brushed my teeth yet, I’m drinking coffee, there’s no music, no sound on in my house. It’s just silent. The dogs are sleeping around me and I am just in bliss. I’m super happy without talking to people all day long. I actually, even our interview, we scheduled for today, and I scheduled all the rest of my phone calls for the week for today so that I don’t have to talk to anyone on the phone for the rest of the week.
Erin Everett: That’s amazing.
Jenelle Marie Pierce: I’m an INTJ on the Myers-Briggs if you’re familiar with Myers-Briggs.
Erin Everett: Yeah.
Jenelle Marie Pierce: I am this spitting, exactly everything they say about INTJ is me to a T. It’s just not to me. It’s on such a level. That’s not what people will read because I’m so public and I share things in such a way, but most of the time I’m just hiding in my house.
Erin Everett: Yeah. I think that’s a really important distinction that you just made, because a lot of people see introverts as anti-social, and they’re not. They enjoy to be social but they also really need their alone time and they need to refuel and they can be easily overstimulated by social interaction, not that they dislike it. I think that’s super cool. We’re pretty similar in that regard. I definitely enjoy social interaction, but afterwards I need to return to my cave.
Jenelle Marie Pierce: yes. Oh, so much. That’s the actual big identifier I used to show to my college students, I teach college classes as an adjunct, and I used to show them a 20 minute TED talk that was the Power of Introverts. That was the name of the TED talk. It talked about how that is the common misconception. All my life basically everything I do around STIs, now I have a pit bull, I’m basically challenging stigmas and misconceptions of every facet of my life. That’s a side note, but anyways, it’s the same thing with introversion. It’s not that folks don’t actually want to engage, it’s where you gather your energy. Whereas my mom and dad are extroverts, so they’ll get done at a get together, a family party of whatever, and they’re like high energy, like, “That was so much fun,” and yay, yay, yay. Even though I will have had fun, I’m tired and I don’t want to talk anymore.
Erin Everett: Yeah. You’re ready to retreat to your cave, have some quiet time.
Jenelle Marie Pierce: Yeah, exactly.
Erin Everett: Do things that make you happy too. What took you to Asheville? I freaking love that city. My mom lives in Michigan, and Asheville is just simply amazing. It’s so progressive.
Jenelle Marie Pierce: It is awesome. Thank the stars for Asheville and the community here. I am so relieved to be in this area. I was on the other side of the state for a couple of years. We moved down here initially to be closer to my husband’s family. I grew up around my family for 30 years and was in the same area forever and ages, and I’d always had this vision that I would move away and explore and try some place new, but I think the introvert in me knew better, that that probably wouldn’t happen in the same way that some folks are just like wanderlust people. I’m like I’d rather lust instead of wander and sit in one place doing that.
Jenelle Marie Pierce: Anyways, I always had this vision that I would go and explore. Denver was some place that I looked at, and San Francisco and all of these, of course, super expensive but very progressive places. Where I grew up in Michigan, which was Grand Rapids, Michigan, it’s the second largest city in the state but it’s the conservative of the two. Detroit is the biggest and that’s super progressive and liberal and everything. For me that was tough because I tend to err on the side of very, very progressive, very, very liberal, do what you want with yourself, your life and your body kind of situation. I was always day dreaming about what would it be like to be in a community like that.
Jenelle Marie Pierce: We moved down to North Carolina and it was super cheap to live on the other side of the state, so we did that initially, but it was miserable. It was very, very conservative. I got called horrible names when I cut my hair and shaved the sides of my head. I mean I had some really crazy stuff that you only see on YouTube happen, where people are taking a video, and you just never think that stuff is going to happen to you and then it does. It was horrendous, and I was just miserable for two and a half years there.
Jenelle Marie Pierce: Finally, my husband has family on this side of the state as well, so we had a job opportunity come up, and as long as I have internet, I can work anywhere, so I was like yes, let’s get the F out of here. I can’t take this anymore. Now, Asheville, like you said, it’s so cool because it’s beautiful, first of all, and there’s lots to do actively. We’re super active. I like to hike and kayak and camp and all that stuff, so it’s perfect for that over here. Secondarily the community is super progressive. They have Vino and Vulvas, which is a show that one of my friends over here produces that I’m going to be on the panel this year. There’s just neat stuff going on. One of her shows, even though it’s called Vino and Vulvas, so hey Heather, I’m sending you a shout out. I’m going to have to tag her.
Erin Everett: Yeah, I’m definitely going to have to check this out.
Jenelle Marie Pierce: It’s so cool, and she always has these experts on her panel and it’s always at a brewery because Asheville’s filled with breweries. One of her last shows was Beer and Butt Holes, so the whole show was all about butts and butt sex and butt health. I mean that’s the kind of city that Asheville is. It was packed, too. It was sold out. It was standing room only.
Erin Everett: Is this a factual show or is it kind of comedic relief?
Jenelle Marie Pierce: It’s a little bit of both. It’s really geared toward being factual in support of sexual health, but with an entertainment and also a light side to it. Yeah. Even that Beer and Butt Holes, some of her panelists were just funny. They were talking about a serious subject that’s uncomfortable for folks and somewhat taboo in a way that was relatable and warm and we laughed. We were all nodding. It’s a cool experience.
Erin Everett: Yeah. Saying things that people are thinking but not necessarily comfortable talking about. I love it.
Jenelle Marie Pierce: Exactly, exactly.
Erin Everett: It sounds like we need to connect with Heather too.
Jenelle Marie Pierce: Yeah.
Erin Everett: This is the kind of thing I’m talking about. This whole Exclusively Inclusive podcast is supposed to bring people together, feel like they can talk about their sexuality, and while the focus is LGBTQ, obviously I want cis-gendered people and allies to feel comfortable talking about whatever makes them normally uncomfortable on this show. All that sounds amazing, really cool.
Jenelle Marie Pierce: That’s wonderful.
Erin Everett: Yeah. Awesome. Well I guess we should get to the meat of the show because I know the listeners really want to hear from you. You touched on it briefly about your STD formerly now STI Project and your HANDS activist network. Give us a little bit of an overview of kind of the work you’ve been doing and things that you’ve been doing to kind of create this awareness and break the stigma.
Jenelle Marie Pierce: Yeah. That’s a good question. Really it’s all about reframing, dismantling and reclaiming, and we do those things through what we call the three pillars, what I call the three pillars, awareness, education and acceptance. First, of course we have the website so you can Google and search in theory for, we’re top ranked, so then you can find our blog posts and things like that, but then we’re also on tons of social media channels. I have a podcast. I’m horrible at it, but I’m dabbling in podcasting and YouTubing and all of the things, basically trying to be everywhere as much as possible to open the conversation, to start the conversation, to say, hey, this is a relevant experience for so many people.
Jenelle Marie Pierce: So many people contract an infection and feel isolated, entirely alone, and they don’t realize that there are resources, and there actually aren’t that many resources, so it’s not even that they don’t know that there are tons available and all they have to do is find it. There are really few resources that are out there that are talking about STIs from a more realistic perspective, a more personal approach, and that’s where the reclaiming the narrative comes from because there’s a lot of great resources out there that are a little bit clinical and dry, and they’re necessary, they’re needed.
Erin Everett: Of course.
Jenelle Marie Pierce: The American Sexual Health Association or the CDC. They’ve got tons of information about symptoms and testing and treatment, all the things that are absolutely applicable and we definitely need that out there, but then there are very few resources that are talking about what does it mean to live with an STI? What does it mean when you contract one? How do you communicate that to a partner? Does this have to change your sex life and your behavior and your habits and what you’re interested in? How does this impact you on a psychological level and a social level? All of those facets are really rarely covered. That’s really what we’re doing and what I do on a daily basis, is I do a lot of work around talking about what the experience is really like.
Jenelle Marie Pierce: Not just for myself because I’m cis-gendered and heterosexual primarily. I’m a little on the spectrum too, but I’m married to a man and a person who has a penis and who was a male at birth as well, so his sex matches his birth and his current identity matches his sex at birth and things. All of that said, my experience is not going to be representative of everyone’s experience, so that’s where HANDS comes in. We still have work to do in broadening our network and making it larger and representative of multiple populations and marginalized identities and such. There are quite a few that are represented by our members now. We have 30 members, 30 public activists, and then we’re also now this coming year, we’re adding in, we just had two new organizations join, so now we’re adding organizational bodies, educational institutions, public health clinics and stuff like that.
Erin Everett: That’s amazing.
Jenelle Marie Pierce: The intent is to say that if folks find me, and I’m glad that they do, but either my energy, my tone, the messaging, my approach, just who I am doesn’t seem to resonate with them, that’s totally okay, and it won’t with everyone and that’s for sure going to happen. Here are all these other resources and people who may be speaking your language, whatever that is and however that means and however that feels to you like a good fit. That’s really the intention is to not only for me to be doing the work, but to help others and to uplift others who are doing it too so that they can without burnout, so that they can sustainably and that we can continue to foster additional activists.
Jenelle Marie Pierce: It’s not necessarily the case that even everyone has to be a public advocate. In the HANDS membership, you can be a private or a public advocate. Also it’s not safe for everybody to be public about their STI status in the way that I am. And it is not necessary for good activism and for advocacy. There’s a myriad of 10,567, exactly, ways in which you can be an activist. One of those might be being a public activist like I am, but there’s such a plethora of different ways in which you can help yourself as well as others, and it doesn’t necessarily mean being public about it. It’s all of those things working and trying to say, hey, we’re real people who have these experiences. It will be okay. Everything that you hear, this horrible stigma that’s associated with STIs, that’s really not accurate or representative of most folks’ experience. How do we change that? How do we redefine and reclaim that narrative?
Erin Everett: Well that’s awesome. That’s seriously so cool. I wanted to circle back a couple of things to touch on what you were saying. Coming back to the diagnosis of an STI. As a health care provider in a primary care clinic, I actually sometimes, depending on the day, wonder if I work in an STI clinic. There’s a lot of STDs out there. I’m very open with my patients. I make sure that they feel comfortable talking to me about their sexual practices, their sexual acts, whether they’re having sex with penises, vaginas, both, toys, whatever. Whatever you’re doing, I try to tell them I’m not asking because I’m nosy. I’m asking you because I want to come up with your own tailored sexual health treatment plan and prevention plan.
Erin Everett: Jenelle walks into my clinic and she tells me who she’s having sex with and what kind of organs you’re using and whether they’re using toys or this, that, condoms, whatever. Based on what you tell me, I can come up with defense mechanisms to A, prevent you from getting an STI, but also kind of manage what you’re talking about which I’m always floored with the amount of shame going on behind the diagnosis of herpes. People are freaked out about a diagnosis, and this is just my experience with my patients. They’re freaked out about diagnoses of gonorrhea and chlamydia, but they know that there’s a treatment that eradicates it. They are really freaked out about a diagnosis of herpes and wonder what the lifelong implications are.
Erin Everett: I’m always trying to reassure them, like listen, pretty much everybody who walks in here has herpes in some form, because as you probably know through your research, either your self research or other things that you’ve done, herpes also is very closely related to other types of viral infections. I’m trying not to test people via serum levels in their blood work, because we can check an HSV1 and and HSV2 titre, but if someone has never presented with symptoms of herpes, I’m extremely reluctant to do that. I explain to them because you might get labeled with a diagnosis you don’t actually have, because those titres aren’t 100%. They’re not super accurate. They only become accurate about eight weeks after you’ve presented with symptoms of herpes, which, you know, for people listening who have no idea, I’ll briefly summarize.
Erin Everett: Sometimes the first infection does not actually present with an ulcer or lesion. It might just be like achy, cold, flu-like symptoms. Other times it’s a very painful cluster of lesions that usually are fluid-filled, that break open, crust over, and they’re extremely painful. They’re usually sending you to a provider because if you don’t know what it is, you’re like, “Wow, this really hurts.” That’s the distinction between that and syphilis, right, because syphilis doesn’t hurt. I tell patients, again, if you haven’t had that happen, I really don’t want to put this diagnosis on your chart. I care less about your chart. I care more about your mental health because I see the amount of mental anguish people go through with these diagnoses.
Erin Everett: Having an STI project like yours where you’re breaking the stigma and re-educating patients to know, hey, it’s not just you who have this. Let’s talk about this and how you can live a healthy lifestyle, because for me it’s like when I’m talking to patients, that’s no different than you coming in. For some reason people care less about oral herpes. I’m like, do you know what? It turns out herpes does not actually discriminate. If you contract herpes via oral sex, you can get HSV1 lesions on your anus, your vagina or your penis. It’s actually more painful, but when I test them on the blood work, they leave feeling better, like oh, they’re just fever blisters. Well, it’s all just fever blisters, right, it just depends where it’s showing up.
Erin Everett: I find myself constantly connecting people with therapists or other outlets and referrals to kind of break their own stigma and like you said, re-write the story. Again, to your point, those resources are slim pickings. I have a few really good local therapists that can talk to patients about that and alternative types of sex until they feel comfortable having sex with their new diagnosis, but I think it’s really important. I’m so glad that I was able to find you because I’m going to be able to use you as a resource for my patients. Just to reinforce everything that you said, what you’re doing, few people are doing it. Like you said, people don’t necessarily have to stand up and say, hey, I have herpes, but if they then can break their own stigma and re-write the story, then when they do share with their sexual partner in a much more relaxed, casual way and educate their partners, that’s how the domino effect occurs as well.
Jenelle Marie Pierce: Oh, it’s so true. You’re doing the work as well, and that’s what’s so great about it. It’s like yes, a lot of times people see me as the face of herpes, this public kind of basic figure, and I’m not the face of herpes because herpes doesn’t have a face. It cares zero about what you look like, what your background is, what kind of sex you’re having. Yes, certain types of activities are going to be more susceptible to contracting an infection just because of our biology, just because of how our body is made up and where our mucous membranes are housed and things like that. Like you said, first of all letting folks know that there are tons of people who are walking in. You see herpes all the time. You see STIs all the time. Oh my gosh, this is something I see every single day. We might as well just be an STI clinic because that’s how many there are. Even knowing that, that in and of itself is such a relief to folks. I don’t even know if you recognize how much you’re helping people by even sharing that small tidbit of information, of this is such a non-issue for us. We see this so much. For them, it’s like huge, giant, big, big, big.
Erin Everett: Earth shattering news, yeah.
Jenelle Marie Pierce: Yes, exactly, exactly. That’s great. Also your conversation, it’s so great to hear a provider actually doing this well because we’ve done … I sit on the board of the National Coalition for Sexual Health, and some of our member organizations have done research around basically that providers are lacking in terms of the kind of communication, the sexual health conversations that they’re having, the preventative efforts that they’re encouraging and/or that they’re able to mitigate through that conversation and through discovery and being able to meet people where they’re at and having that eye to eye conversation that doesn’t feel shameful, that’s just factual and practical and helpful. That’s just not happening across the board.
Jenelle Marie Pierce: Even the conversation around which types of sexual activities folks are engaging in, it a lot of times feels very invasive because we’re so afraid of talking about our sexual health and our sex lives publicly or in any kind of fashion out loud whatsoever. Really, like you said too, we even need to know whether you’re having oral, anal or penetrative sex if you have a vagina. I mean all of those things are relevant because you have to get tested in different locations for different infections. People don’t realize or recognize, oh no, it’s not just a simple pee in a cup and then you can capture everything. If you have an oral infection and you pee in a cup, it’s not going to discover that.
Jenelle Marie Pierce: People aren’t aware of that necessarily, and just that kind of conversation is like, “Oh, the reason I’m doing this is because …” I know it takes that small extra step, but I think it helps reframe it and make it to where it feels safer for people to share information that they just feel so worried about and so much shame around anyways, which is unfortunate but it’s the reality. It’s like how do we address this reality and help people to feel better about the experience? Like you said too, being able to chat about it going forward. Does this mean I want to change behavior or different type of sexual activities for a while? I’m working at it, figuring it out.
Jenelle Marie Pierce: It’s interesting too because you mentioned the being reticent to test folks for herpes, and I think it’s two fold and it’s a circular problem in that the stigma itself and how pervasive it is, especially specifically for herpes because it’s long term, it’s been the butt of all jokes, it’s all in late night comedy, culturally it’s used like shaming tool. Because of the way that we treat and how we treat herpes, people are absolutely more petrified of that than even some other infections that could even be worse. I mean not necessarily worse, but could have longer term ramifications or complications. Even if they’re not worse, they’re just whatever basically they could also just be the same in terms of the implications on our health. Either way people are so worried about that specific one which is making them ask a little bit more, be more persistent about getting tested for it because they want to know whether they have it or not and they want to make sure that they don’t, essentially, is really the goal there. They’re really hoping that they don’t so they can claim that, know that, feel good about it.
Erin Everett: Yeah, but the whole quote, “I’m clean,” which I really try not to encourage. It’s like, okay, just because you don’t have herpes doesn’t mean you’re clean. Did you bathe today? It’s not a clean or dirty issue here.
Jenelle Marie Pierce: Exactly. The thing is too is even getting a full panel test and having those turn out all negative, you’re only getting tested for four or five infections at max, and there are 30 plus STIs out there. The whole clean/dirty dichotomy, one, it doesn’t even make any logical sense because hygiene has very little, if anything at all, especially in first world countries, to do with the risk of transmitting an STI, and secondarily, the idea like if I’m negative for an infection, I’m clean, then that means it assumes then, presumes that then if you’re positive for an infection, then you’re dirty. We can’t do that because that doesn’t actually make any logical sense and it’s shaming, of course. As soon as you tell folks that, “Oh, we don’t use clean to describe a negative status, because you don’t even know if you’re negative for everything because everything can’t be tested for.” People are like, “Oh yeah.” Almost always kind of a light bulb goes off and they recognize it and say, “Yeah, you’re right. That doesn’t make any sense. Okay.”
Erin Everett: Right, right.
Jenelle Marie Pierce: I’ll change my language. That’s actually one of the easier misconceptions to tackle, but I think it’s that whole … the testing is tough for me because on one hand I totally understand and support anyone who wants to get as much information as possible, but the kind of education that’s necessary when someone tests positive for an infection that they’ve never had symptoms for is complicated, because there would need to be follow up testing, because you could have had a false positive.
Erin Everett: Correct.
Jenelle Marie Pierce: False negatives are more common than false positives, but even so, you could still have a false positive. Then if you so, it’s then you should go back again in three to six months and make sure. In the meantime you’re in this limbo state of do I or don’t I? I have potentially this positive and I don’t even know the location. That’s the other caveat is that you could test positive and like you said, your fever blister can literally be on the genitals, your anus, or it could be on your lip. I don’t know why there’s such a big dichotomy between the two of a good herpes and a bad herpes. Again, that makes zero sense whatsoever.
Erin Everett: Of course.
Jenelle Marie Pierce: Logically all this stuff doesn’t make sense, but it’s emotionally targeted or triggered. That’s what’s happening is the psychological impact is because of the concern and what happens socially amongst ourselves, amongst one another when this diagnosis happens. What we assume, assumptions based on misconceptions, it’s just this whole large circular problem. I think actually if we could reduce the stigma significantly enough, which I don’t know if I’ll ever see that in my lifetime, to be honest. I mean there’s so much more work to be done and it’s pervasive across multi sections. It’s culturally pervasive and intersectional. It’s not just one thing that we could fix and then it will all go away kind of thing. There’s media and there’s our educational system and how we view sex in general. There’s so much that impacts it. If we could really, this is hypothetically speaking, but if we could really reduce stigma significantly enough to where people felt about genital herpes that same way they do about oral herpes, I don’t even think anyone would care to get tested anymore.
Erin Everett: Right.
Jenelle Marie Pierce: People wouldn’t be pressuring and pushing and saying, “Yes, I really want this test. Yes, I know I don’t have any symptoms or whatever, but I need to know.” There wouldn’t be that concern.
Erin Everett: Yeah, you’re right. I never want to block someone from getting a test that they want our of their own curiosity, but if they’ve never had symptoms, like you said, there’s so much education that goes into that. Okay, you’ve just added 20 minutes onto our visit because I’m going to go over reasons why I don’t love testing for asymptomatic herpes. If you still want to at the end of this little educational session, then I’m happy to test, but I want you to report back to me and verbalize your understanding of how these results may or may not impact your life. You can get tested, but …
Jenelle Marie Pierce: Yes. Tell me what you’re hearing.
Erin Everett: Yes. Let’s make sure we’re on the same page.
Jenelle Marie Pierce: Yes. Here’s another angle that I don’t know if you’ve considered, so you’ll just have to tell me if you ever have it. I could see the one thing … I do a lot of consultations. I offer consults for a fee, and I have a group as well that’s a lot more accessible price point too if you don’t want a private consult. Anyways, there’s my little drop there, but that actually wasn’t my intention.
Erin Everett: Awesome. I was going to ask about that anyway so the listeners can hear.
Jenelle Marie Pierce: The point about that or where that was coming from, where I originally started thinking about it is in those consults, a lot of times it’s somebody who has herpes. It’s almost always herpes. I’ve consulted on Molluscum and a couple of other things too, folks who have longer term infections. HPV as well, that one’s pretty common. Herpes I get the most because of the stigma and because of how devastating and traumatic a diagnosis can be understandably. The conversation is almost always the same, and it’s all along the lines of okay, I have a new partner. I either have or haven’t disclosed to this partner yet, and I’m really worried about transmitting the infection to them.
Jenelle Marie Pierce: One of the things I always talk about with them is that, and this is something that just a lot of folks aren’t aware of, is that if they go and get tested … so they would be a person who’s asymptomatic walking into your facility. Then if they find out they have either type, that they have type one or type two, even if they don’t know where the location is, they are much less likely to contract an infection from either a different type or in a different location from that new partner. What I’m saying is the people who I consult with are always really worried about the disclosure, they’re always really worried about transmitting it to a new partner, and one of the things I tell them is one of the things you can do once you disclose to this new partner, if the partner wants to move forward with you and is considering this, I would ask them to get tested because they may have an asymptomatic infection. Maybe they have HSV1 orally from when they were a kid, or maybe they have a genital infection, HSV1 or 2, and it’s just asymptomatic and they’re a carrier and they’ve had it for years and years. If so, then that changes the conversation a little bit.
Erin Everett: Absolutely.
Jenelle Marie Pierce: That’s one of the times where I would encourage …
Erin Everett: Asymptomatic testing. Yeah.
Jenelle Marie Pierce: … a test for an asymptomatic person if they have a partner who they know has it. Not because they necessarily think they’ve contracted it from them, but because they’re curious if their risk is a lot lower because they’ve already got the antibodies established. It’s not all the same antibodies. It depends on which type you have and which strain you have too. There’s actually strains of the types, but it does definitely help. It’s something to know because I think it helps reduce a little bit of the fear, the paranoia and whatever, and because we know, you and I know, and now everyone who’s listening knows that so many people have either an HSV1 or HSV2 infection, whether oral or genital. It is something that’s good to know because that can help alleviate some of the fear, some of the fear of transmitting and that paranoia of now I’m the person that they have to watch out for. I’m the monster, I’m the risk, whatever.
Jenelle Marie Pierce: Then it can also eliminate a little bit or reduce the fear of contracting from a partner who really is into this person, but they’re also carrying internalized shame and stigma that’s associated with STIs and herpes in particular, so they’re just not sure how to move forward. I just think it’s good information to know in that scenario. I hear you. It is, it’s a long conversation. We’ve been talking about this now for 10 minutes and we’ve just barely touched the surface. You would have to do that with every single person walking in, I feel like, to feel good about what you were providing, rather than just handing them a test and giving them some results and saying, “There’s the door.” You’re setting them up for fear and failure. In order to even feel good about the service that you’re offering, you have to add some additional information. Ain’t nobody got time for that. You’ve got a long list.
Jenelle Marie Pierce: That’s part of the problem is our system in general does not provide that time and space to give that thorough education. I’m not even really sure where the onus is because is it the health care provider’s responsibility? Is it our public school teachers? Is it parents? Or is it everyone? Maybe it’s a little bit of all, but still, it’s complicated.
Erin Everett: It is. It goes back to the old saying it takes a village. I think it starts in early childhood when you’re already talking about … part of the reason why people have that stigma towards genital herpes versus oral is because people are uncomfortable with their genitals. They don’t even know the right name for them 90% of the time until they’re much older. Even saying the word vagina for some people is, ew, I don’t like to say that. Can we call it something different?
Erin Everett: Even my adults patients, because I don’t see patients under the age of 18, but even my adults patients will say, “Well down there.” I’m like, “You’re going to have to be more specific. You have a lot of organs below your waist. Are you talking about your toes? You’re having knee pain?” It’s like, “No, down there.” It’s like, “Okay, your vagina, your scrotum, your penis, your glans, your prostate? What’s going on?” It starts with what we talked about earlier in early childhood. If people feel more comfortable with their genitals and their actual body parts, then they’re going to feel more comfortable having these conversations with their sexual partners and their health care providers because it’s not going to be weird to even mention the word, let alone talk about the health of that organ.
Jenelle Marie Pierce: Yes.
Erin Everett: I try to get people to view their genitals like their elbow. I’m like, “You would have no problem coming in here and telling me you had a rash on your elbow. Your penis and your vagina is no different, so let’s talk about it.” It’s just another piece of you that needs attention.
Jenelle Marie Pierce: Yes, exactly, that needs attention.
Erin Everett: It does.
Jenelle Marie Pierce: Let’s give it that attention that it deserves.
Erin Everett: Exactly, and to your point, in order to have a healthy sex role life or relationship with somebody, you also have to be taking care of those organs as well. Like you said, we just scratched the surface, but you briefly mentioned HPV. I mean that can have lifelong potentially fatal implications if people aren’t getting their health screenings. It’s important that people get tested not just so they can talk to their partner about this potential herpes diagnosis, but also then get vaccinated against other STIs and get routine checkups and get what they need to get done if they HPV on their cervix so that they can prevent themselves from getting cancers, that kind of thing, or anal HPV. It’s a whole gamut of issues outside of just having that conversation of okay, who gave it to me first?
Erin Everett: I think your point about the asymptomatic testing is extremely valid. I’ve definitely done that for partners before where they’ve either come in together or separate, and when they’ve come in separate, they’ve said, “My girlfriend, we’re about to become sexually active. We’re newly dating. I know that she has herpes and she’s extremely worried about giving it to me, so I kind of just want to get tested.” I think that person has done their due diligence in educating themselves and being an advocate in their own health care plan which is freaking awesome.
Jenelle Marie Pierce: Awesome.
Erin Everett: Yes. But how do we reach people who don’t know how to do that? I’ll happily test someone asymptomatically to allow partners to have sex without fear and without shame. If someone’s coming in for routine testing just like, “I just want to know,” and they’ve never had a diagnosis or symptoms before, I’m hesitant to add that diagnosis to their list when they’ve been asymptomatic before and just so that they can have that other puzzle piece. Maybe I should be doing that more. Maybe that would help break the stigma.
Jenelle Marie Pierce: I don’t know. I mean I hear what you’re saying and I empathize with it. It sounds like your approach is pretty holistic and you’re looking at their situation wholly and not just blanketing and saying, “I don’t ever test for this,” or, “You don’t need to know because what you don’t know won’t hurt you.” There’s some problematic standpoints that I’ve heard from practitioners before which is usually, I mean any time we blanket anybody. Here’s a blanket something for a large population is problematic anyways, right? I don’t hear that that’s what you’re doing. I think you’re really looking at it from a practical perspective. Is this helpful? Is this information that you really need or are you wanting it just because you’re checking off the box to be able to do the whole I’m clean thing, which sometimes I do see that.
Jenelle Marie Pierce: Not that I would discourage testing ever, but I’ve seen that where folks will get regularly tested, and it’s a public health department or something like that, so they’re getting three or four of the common, chlamydia, gonorrhea, syphilis and HIV. Those are four, and sometimes hepatitis is in there, but not often. It just depends on which system you’re in. Whatever. They get four infections and then they’re negative for them, and then they kind of parade it around on dating apps and things and say, “Oh yeah, I’m clean. I don’t have anything. I just went and got tested. I get tested every three to six months.” So here I am and I get to go bee bop around and do whatever without any concern. That’s an erroneous kind of viewpoint. That is not moving the conversation forward in any sort of way. It’s missing the mark. It’s missing a lot of actual facts.
Jenelle Marie Pierce: Like you said, HPV is a perfect example. I’ve seen this, not to stereotype, but I’ve seen this in more masculine male types. That’s a product of some toxic masculinity and things and whatever, so it’s not necessarily that person’s fault as an individual, it’s a product of our culture again. I’ve seen that kind of what I was talking about of the, “Oh yeah, I’m clean and I get tested regularly and I don’t have anything. I tested for all the things.”
Jenelle Marie Pierce: I actually spoke on a panel at Florida A&M a couple of years back for the Know Your Status tour. There was a rapper who I was on the panel with, and he said this. I had heard it before so it made me laugh. I called him out right then and there, but he was like, “Oh yeah, I don’t have anything. I’m clean. I test regularly.” I was like, right there, in front of the entire audience, I said, “Actually you don’t know that for sure.” I said, “You know that you’re negative for the infections that you were tested for, but HPV, since you’re a person with a penis, you can’t be tested for that, so you could have HPV.” I said, “It’s awesome that you’re getting tested regularly, like highest of fives and go for it. I think that’s wonderful, but the way in which you’re communicating this now is harmful. You’re propagating stereotypes and perpetuating them.”
Jenelle Marie Pierce: Of course Twitter blew up, like, “Oh no, she did it. She just said so and so had an STI.” I’m like first of all I didn’t say he did. I said it’s very possible and very likely. 80% of all people, by the age of 50, will contract HPV. I love that number. Normally I’m not big like statistics, numbers, throw them out because they don’t really resonate with people, but that one is huge and so huge that I’m like basically that means all people. Most people won’t know because they’ll clear it on their own, but like you said there can be some harmful effects if it’s not caught, if there isn’t proactive checkups being done and pap smears and things like that.
Erin Everett: Yeah, because a not so fun fact is that HPV is now starting to take the lead on throat cancers. That’s so far off their radar. People get throat cancer from HPV all the time, and it’s not like it’s happening to people in their 20s and 30s and things like that, but it could. People aren’t talking about it and they’re assuming that throat cancer’s a result of other issues like tobacco use, chronic acid reflux, things like that. No, I mean that’s why they just recently, and I’m not sure if you’re aware, you probably are, but they just recently allowed us to vaccinate people against HPV up to the age of 45 now. A lot of commercial payers still aren’t paying for it, but the more I write it, the more they’ll start covering it, so I just tell my patients, “Oh, if it’s not covered, we’ll try again next year.” But if I keep submitting the request for coverage by writing for the vaccine or trying to get the vaccine covered, they’re going to have to fold and start covering it.
Jenelle Marie Pierce: I love hearing that. I love hearing that you’re trying to do that and working in that manner, not just giving up.
Erin Everett: That’s how we got a lot of transgender medicine hormones and blood work and all that covered because when I first started, and I know this is off the subject a bit, but it’s a little relative because when I first started doing HRD and transgender medicine, none of it was covered and everyone was so afraid to use the gender dysphoria ICD 10 code which I get, nobody wants a label on them, however it was so important for commercial payers because if I’m submitting a request for coverage under an E34.9, which is endocrine disorder unspecified, then they don’t know that I’m taking care of a gender diverse person or someone in the trans community. They just think it’s some other unspecified endocrine disorder, which it’s not. It’s not a disease process.
Erin Everett: It was important to highlight with the F64 codes, there’s several of them, so that payers knew, okay, wow, there’s a lot more people out here that need these services than we thought, and so coverage was then expanded. It goes on for all things, HPV vaccines. For a long time the gonorrhea and chlamydia Aptima swabs that we were using, patients were getting huge bills for because payers were like, “Why are they doing this every three months?” Because we need to. The more we do it, the more they’re going to cover it. Sometimes we need to do it more than every three months. That’s just for the baseline really. If you’re sexually active with more than one person, even if you are using condoms, I still want you to come in at least every three months.
Jenelle Marie Pierce: Right, and who’s using condoms for oral sex anyways? I mean let’s just be real. Not that I don’t encourage that and say it’s a great idea and there’s a wonderful place for condoms.
Erin Everett: Of course. You sound exactly like me.
Jenelle Marie Pierce: It’s wonderful, but it’s not happening.
Erin Everett: It’s not happening. As your provider, I’m going to definitely encourage you to use these condoms for oral sex, but also as your provider, I’m going to have a dose of realism. I know you’re not going to, so let’s not kid ourselves.
Jenelle Marie Pierce: Yes. Exactly.
Erin Everett: Please consider it.
Jenelle Marie Pierce: What a breath of fresh air, though. I’m sure so many people are so very thankful for you. This is a little side bar, but even the idea around the hormones being only covered by insurance if they are part of a disease process, I also think that that also could have caused harm to the folks early on who were part of that, who were getting hormones and who had to have it docced as a disease process. That in and of itself and seeing that paperwork, essentially to not have to … it would take a little mental work to not say this is being classified as a disease. I’m a disease, this is a problem. Do you know what I mean? As opposed to just this is me and this is okay and this is what I need for my health. That in and of itself had so many potential implications to it sociologically, or psychologically that thank goodness that that has changed.
Erin Everett: I think people, providers who were using those codes were trying to be sensitive to the community because they didn’t want to label them. Of course with the current administration, which we won’t get into, but there was always that fear that if my health insurance has that information, I’m labeled and now I could be targeted in other ways. I think it came from a good place, but it’s like again, sometimes you have to advocate fiercely and kind of put yourself out there just to get more coverage. Sometimes you take two steps forward, one step back, and that’s just the way progress goes.
Erin Everett: All right. Well we have touched on some really awesome stuff, but I just wanted to make sure, was there anything else that you wanted to kind of speak freely about, kind of reach listeners on or any final notes that you wanted to highlight or that you found really important to mention?
Jenelle Marie Pierce: Yeah. I guess the hill that I’m going to die upon is that I really want to encourage folks who have an STI, who have been diagnosed with an STI to be their own advocate. There are folks like myself who are absolutely pounding the pavement and doing everything we possibly can educationally and on social media and across the board, wherever we can, to let other people know that one, we exist, and one, we’re human and people and nothing is different from us than from anybody else and so on and so forth. I just think it’s so easy to get wrapped up and lost in the mindset now I am the risk, I’m the problem, I’m the thing that everybody’s worried about and that people are trying to avoid or concerned, the monster of society, and then we get stuck in that head. I can say that just from personal anecdote experience that I was there for many, many years.
Jenelle Marie Pierce: We forget to advocate for ourself and our pleasure and our autonomy, our bodies, what is good for us. I especially think that it’s when we’re talking about potentially disclosing to a new partner and what they’re going to think and what that possible rejection might be and if they will want to move forward and if they’ll be worried about contracting our infection. We forget that we’re also susceptible. Once we have one infection, we’re more likely to contract another, and our bodies and our health is just as much a priority as our partners’ bodies and our partners’ health.
Jenelle Marie Pierce: That conversation is a two way or three or four, whomever, how many ever partners are involved, street. It goes in all the directions and it’s not just a now I have to share this information outwardly and hope that they receive it and want me. It’s a I also need some information in return to be cognizant of what’s going on in my health and body and to be proactive about that as well. I just want to put that as a final statement of your pleasure matters and you’re still deserving of phenomenal relationships, pleasurable relationships and awesome sex and a sex life if that’s what you want. If so, then go out and get it.
Erin Everett: Right. That’s awesome. I couldn’t have said it better myself. Thank you so much for coming on. Every time sometimes when you’re out here advocating and you think, wow, this is just so daunting. You stumble across fierce people like yourself who are on the same path and want to continue to help the community and whoever they can reach, so it’s been super enlightening talking to you, and I really think we could have multiple episodes where you could talk even more about other STDs and other things that you’re doing for the community, and it would be amazing.
Jenelle Marie Pierce: Oh, absolutely. I’m happy to come on any time. If your listeners have some follow up questions too, we can answer them in your comments on your social or whatever. You can shoot them over to me and I can help with that.
Erin Everett: Absolutely.
Jenelle Marie Pierce: I’m sure there’s stuff. We barely even touched on certain things. Absolutely. It is. It’s a complex and in depth conversation that a lot of people care a lot about. Absolutely. Any time. It’s my absolute pleasure. You just let me know.
Erin Everett: I really appreciate that. Again, for the listeners, I just want to say a big thank you to Jenelle Marie Pierce. If you have any questions for her, you can reach either her herself at thestiproject.com. She has all of her contact information and social media platforms listed on her website. We’ll also be listing those in the summary for today’s podcast episode. Also if you have any questions for me or anything that you wanted me to ask on your behalf, please feel free to reach out to firstname.lastname@example.org. Thanks again everyone, and thanks again, Jenelle. Make sure everybody stays fierce. Love everybody and make sure you’re speaking your truth.
In episode six of Exclusively Inclusive with Erin Everett, NP-C, your host interviews Jenelle Marie Pierce, Executive Director of The STI Project and Founder of Herpes Activists Networking to Dismantle Stigma (HANDS).
After providing a bit about her life in Asheville, North Carolina, Jenelle goes on to discuss the goals of each of the organizations and how she works to destigmatize STIs and living confidently with a STI-positive status by reclaiming the narrative and the three pillars of Awareness, Education, and Acceptance.
Later on in the episode, Erin and Jenelle discredit the usage and perception of being a “clean” or “dirty” based on your STI status, and Jenelle emphasizes the need for self advocacy among members of STI positive community.