SPFPP 225: Destigmatizing Sexual Health Communication with Planned Parenthood
Planned Parenthood Columbia Willamette in Portland, Oregon joins us for a conversation that taught me a few things I hadn't known before. For instance, I was completely unaware that after you receive treatment from a healthcare facility, you can make an appointment to ask questions. I don't know why but I absolutely thought appointments were exclusively for treatment, not education. Lena and Olivia were great to learn from and give us further insight to how Planned Parenthood services can be utilized by patients.
The more we're able to exchange dialogue about stigmatized topics, the less stigmatized they become. With education and the expectation of communication (wow what a sentence), we can inspire allyship in our surrounding communities. This includes our sexual partners, our peers, friends, families, health care providers, media personalities/influencers. This sense of allyship can serve as a catalyst for folks to feel supported in their own dissolution of internalized stigma not just with their own sexual health, but even communicating ABOUT sexual health altogether.
Transcription:
Something Positive for Positive People Episode 225: Destigmatizing Sexual Health Communication with Planned Parenthood
April 8, 2022
Courtney: Welcome to Something Positive for Positive People. I'm Courtney Brame. Something Positive for Positive People is a 501c3 non-profit organization that serves as a suicide prevention resource for people who are navigating herpes stigma. Today's podcast episode features Planned Parenthood Columbia Willamette in Portland, Oregon. And I am here with two people who are gonna talk us through the practitioner side of what Planned Parenthood does as well as the educator side of what Planned Parenthood does. So I am going to have each of you go ahead and introduce yourself by name and title, and then go into what you do. And then we'll pass it around to the other person just so people listening are familiar with your voice. And then we'll get into the discussion today. You first.
Lena: My name is Lena Crandell and I am a lead clinician at the Planned Parenthood East Portland location. I've been with Planned Parenthood for almost 10 years. It'll be 10 years in June. And I'm a nurse practitioner. My role there is to provide care for patients. A lot of that involves S T I screening and treatment, among other things.
Courtney: All right, let's pass it over to Olivia.
Olivia: Yeah, so my name is Olivia Jarratt. I use she/her pronouns. I'm a Community Education and Outreach Coordinator here at P P C W. So, I serve Multnomah County and Clackamas Counties. I teach education in high schools, in trade schools, colleges, to youth service providers, to parents. Kind of wherever sex ed is needed. And I've been here for just over 10 years.
Courtney: Oh, so both of y'all have been here for a while! Are there any notable changes that you can speak to from your own experiences from when you started to where you are now?
Olivia: Oh yeah, I mean a lot. Lots.
Lena: Things change a lot [chuckles].
Olivia: Yeah.
Courtney: Have you always had the same role? Let me ask you that first. Olivia: I have not.
Courtney: OK.
Olivia: I started on a grant for the first five years and then transitioned to the position I currently have, where I'm more connected to the health centers.
Courtney: Mmm-hmm.
Olivia: Of course, Covid shifted everything. But before I was assigned just to the East Portland Health Center, so working with Lena's health center. I still do, and also work with two other health centers.
Courtney: OK.
Olivia: So, that's a way that P P C W has transitioned to connecting health centers and education more than ever before.
Courtney: Pre-Covid compared to during Covid, how has your role really evolved or changed? Outside of having to do everything on Zoom?
Olivia: Well, we had some financial losses. We lost a couple educators. So I've shifted now to taking over more geographical area. And we're also shifting away with fewer staff. We can't do as much sex ed directly in schools, just because of time. So now we're focusing on: How can we build capacity within existing organizations so that they can support people they work with in talking about sexual health? So that's been a huge shift. And it's been great, we've been doing that pretty strong for the last...six to nine months?
Courtney: Mmm-kay.
Olivia: Yeah!
Courtney: Lena, what about you?
Lena: What is the biggest change I've noticed?
Courtney: Yeah. I guess pre-Covid to Covid. In your experience.
Lena: Oh. Well, there was a brief phase where we weren't seeing patients for routine screening or other routine visits. That was in the very beginning of Covid. We weren't seeing preventative care, basically, which is a huge, huge change. That
did not last long, luckily. And now my day-to-day life is almost exactly the same as before. We just wear masks.
Courtney: What was one of the major impacts that not being able to see patients for routine visits had?
Lena: Well, it's hard for me to know exactly without looking at statistics from the Public Health Department. People have asked me before if there's been a rise in S T Is--
Courtney: That's what I was gonna ask! [laughs]
Lena: --Yeah, because people weren't able to get in for testing. However, at the same time, I think a lot of people were a little bit less sexually active, especially in the quarantine phase, maybe having fewer new partners. So I'm not sure if there actually ended up being any notable rise from the already rising S T I stats. So the answer is I don't know. And I think we've caught up pretty well. I mean I've been seeing people for preventative care visits at the same rate as pre-Covid at this point and I have been for a while.
Courtney: OK. And part of what Planned Parenthood offers is preventative care, not exclusively for people with vulvas, right?
Lena: Oh yeah, we see people of all genders with all anatomies.
Courtney: And I ask that because it was actually--I think a podcast interview I did two years ago--was with a guy who got tested at Planned Parenthood and he was like: "I didn't know that Planned Parenthood served men." So that kind of also influenced why I reached out to you all, to speak to some of the things that you all do. And part of that is that you can diagnose someone with H S V--Herpes Simplex Virus--right? And that is part of what you do, right Lena?
Lena: Yes, I diagnose people with H S V every day--
Courtney: Oh, really?!
Lena: --pretty much.
Courtney: So it's that common?
Lena: Well, maybe not every day, but--
Courtney: Yeah.
Lena: Very, very frequently, yes. It's extremely common, so we talk about it all the time. At least talk about it every day, I might not make a diagnosis every day.
Courtney: That's a major part of Something Positive for Positive People, I think, that a lot of people who listen to this podcast have at some point found themselves either testing positive for herpes or dating a partner who is positive for herpes. Based on what you're saying and other healthcare providers that I've spoken with, herpes is common statistically. It's common. I'm curious to know what some of your experiences have been with delivering a diagnosis to a patient.
Lena: Yeah, there's been a wide range of responses, of course. Probably on the most extreme negative end, I had a patient start sobbing hysterically and say they wanted to commit suicide and [I] ended up having to refer that person to an urgent mental health facility.
Courtney: I didn't know you could do that!
Lena: Do what?
Courtney: Just referring them to a mental health resource.
Lena: Oh yeah, there's Cascadia [Behavioral Healthcare] on Division, they take walk-ins for urgent mental health needs, so I sent that individual there. And then I've, on the other hand, had people say, "Yeah, I kinda figured it was herpes. Eh, not too worried about it."
Courtney: [chuckles]
Lena: So, you see the wide range of things. There's very often tears involved.
Courtney: And I don't want to leave you over here hanging, Olivia. So as an educator, how influential are you in Lena's experience with being able to provide educational resources to someone who has been delivered a diagnosis?
Olivia: So, I don't talk one on one to people who just received a diagnosis. I don't give diagnoses or anything. I teach groups of people. I have a way to get anonymous questions, which has actually been a lot easier in the pandemic because I have an anonymous Poll Everywhere link. And they can put anonymous questions indirectly and I get them in real-time. Whereas opposed to in the classroom they would write on a piece of paper and then I'd answer it later. So I'm getting a lot
more questions, which is great. So that is the only method of one on one, if you can even call it that, conversation I have with people in their specific experience. So it's more broad, right? Because I'm teaching--and I'm not just teaching about herpes, I'm teaching about S T I transmission and prevention. So it's just a piece of a bigger conversation.
Courtney: Mmm-hmm.
Olivia: So we're, like, on kind of opposite sides of the spectrum in terms of giving information out to people. Whereas Lena's like very, very one on one during diagnosis, I am not at all.
Courtney: OK, so as someone who's in the trenches, so to speak-- Olivia: [chuckles]
Courtney: --I hear from people who have experiences with receiving their diagnosis on all ends of the spectrum. A part of what started this podcast was the fact that people were expressing suicide ideation after their herpes diagnosis. Enough for it to be noticeable. It's not like it was a one or two time thing, it was like: "OK, is this a thing for people?" So, you have a resource on hand for if someone comes in and they do have that experience where they're in that dark place to where you can refer out to a mental healthcare facility. Is there anything else that you, as the nurse practitioner, are doing outside of just giving that referral? Are you delivering a diagnosis and they cry and then you--
Lena: Oh yeah. I mean, let me clarify that.
Courtney: OK.
Lena: That was an extreme example. The vast majority of patients, they may start crying, but after talking with me--after I talk with them for 10, 15 minutes--I'm usually able to calm people down, make them see that it's not quite as big of a deal as they thought it was, or it's more manageable than they thought it was. I would say with my experience I've been able to help people to not leave the building in a panicked state. I don't need to refer to mental health often.
Courtney: OK. That makes me happy.
Lena: Yeah, good. However, I have had people follow up later and say, "I'm really struggling with this. What other resources can you recommend?"
Courtney: So people can follow up?
Lena: Yeah, of course! Yeah.
Courtney: I don't think people know that. Like, when people leave the facility they're in shock, essentially. You're still sort of processing that news and you might go home and do some googling, but I think a lot of us don't know that when we get home we can call our healthcare provider and ask questions for educational resources that are needed.
Lena: Yes, yes, you're right. A lot of people don't know that. I've also had people who were diagnosed somewhere else and then they come to Planned Parenthood and they're there for maybe a different reason but they mention to me, "Oh yeah, I was diagnosed with herpes five years ago." And then I talk with them about it and say, "Do you have questions about that?" And they often tell me that the information that they received doesn't seem--like they didn't get the full picture. I do spend some time kind of helping people relearn about herpes after their initial diagnosis elsewhere. That can happen.
Courtney: Mm-kay. I'm gonna pass it over to you, Olivia, and ask you how--ooh, what were you gonna say?
Olivia: Not to toot Lena's horn for her, but I think one of the things that is really powerful about how Planned Parenthood is positioned and where the expertise lies, is that like Lena pointed out, she's talking about herpes all the time [and] diagnosing people with herpes, and is only seeing people for sexual health. Right? Whereas people, when they go to maybe primary care providers or wherever, those folks in those settings have a lot of knowledge, but it's kind of vast, right? Obviously, Lena has a vast knowledge also, but [she] is in the trenches talking about sexual health all the time. So one of the things that's really powerful about that is that when Lena places an I U D it's not like: "Oh, I haven't done this in a month." You know? It's like all the time. Like: "Oh I haven't talked to anyone with herpes in forever." That's not true [for Lena], right? More sexual health experts in the actual health facility navigating these conversations and maybe picking up conversations where healthcare providers just haven't given the things that are needed. So I think that's really powerful. And to get to the talk about referrals. Since you pointed out that it's hard for people to really know what all Planned Parenthood does. There's so much out there about, like, [how] Planned Parenthood only does birth control and abortions, cuz a lot of people talk about that.
Courtney: That's what I thought, yeah.
Olivia: I mean, really, like abortion, right? And that's not--of course, we proudly provide abortion, and also that story isn't ours. It's something that people have placed on the organization. And so, I'm very happy that we can have the conversation about what we actually provide. The thing about referrals is that in our database, in the internal stuff, if Lena's like: "Oh, someone needs a referral", she can type into this referral manual we have internally and then get a printout of...all the places in the different counties that provide this other type of care. To at least give people resources that are around. And that worked out, the one that you referred someone to is great because it's so close. The other thing that I do as an educator is I'm in the community at community coalition meetings, learning about what other organizations are doing in the community. And really reminding people that we're there, what we do, and how closely related things like housing are to sexual health, right? Food and security. All these things, mental healthcare, all those things are so inherently tied together. So we're really trying to connect those pieces.
Courtney: That really speaks to something that we touch on on Something Positive for Positive People often, is that “sexual health is mental health.” And the more I talk to people, it's sort of transitioning to this "sexual health as whole-person health." But until we get there, we're gonna say “sexual health is mental health”, cuz I already done started the hashtag and everything.
Olivia: [chuckles]
Courtney: But one thing that you spoke on is, of course, the connection between sexual health and housing. And how these seemingly non-sex-related things play a role in a person's livelihood, their being, how it plays a role in their sexual health. And then the other thing that you touched on was in relation to how--you didn't say this, but here's how I heard it--when you see a specialist for sexual health, that person's gonna have a completely different experience to share than someone who may be a family care physician who's seeing children, babies, to adults. And as someone who may have been going to the same family care provider for the entirety of my life, when I get an S T I diagnosis, I don't think that that healthcare provider sees me as the adult sexually active person. They may still be looking at me as "Lauren's kid", who they have been seeing the entirety of their life and there may be a little bit of shaming or stigma associated with speaking to me about sexual health. And there may be some: "Well, oh, are you married? Are you seeing one person?" Like, little things that you just won't receive in more of a sex-positive, sex friendly, aware, anti-stigmatizing facility such as Planned Parenthood. Are you able to speak a little bit to that in the sense of how you are in the trenches consistently speaking about sexual health versus someone who may not be?
Lena: Well, I guess I've just heard it all. There's nothing that surprises me. I hear from such a variety of people. I, of course, am extremely open-minded working at Planned Parenthood, so I don't know if this is answering your question or not, but I can just take a--I do take a very sex-positive approach to answering my patient's questions and counseling them about sex and sexual health. Does that answer your question?
Courtney: It does, it does. And it more so speaks to an experience that I speak on often, which is how, when I was treated by my family care physician, there was way less conversation around herpes, for instance. Cuz I was diagnosed with herpes nine years ago, genital H S V 2. And speaking to her was completely different than speaking to someone who was in a more sex-positive space where they saw, on a regular basis, people coming in for testing and treatment. And I peed in a cup and I got blood drawn. That was it. There were no oral swabs, there were no anal swabs, there were no questions about the activities that were being done and an assessment for what my risks or my risks to partners were. And so what I guess I'm trying to get at, is how the comfort of being able to exchange dialogue with a healthcare provider who is in this space, is gonna look so different than someone who is seeing you, like, generally.
Lena: Yeah, sure. I mean I would imagine that plenty of family practice providers out there who may not be as comfortable talking about: "OK, so do you have oral sex, anal sex? How many partners do you have? What percent of the time do you use condoms?" Those kind of nitty-gritty questions.
Courtney: Never heard that one: "What percent of times are you using condoms?" Lena: [laughs]
Courtney: That's a new one for me.
Lena: Yeah. I mean there's a lot of questions that can be asked and you have to get detailed sometimes. So, it's very important to be comfortable talking about all that to provide good sexual health.
Courtney: Mmm-hmm.
Olivia: Well, and I think part of it too is that, again, the more you talk about something the more comfortable it becomes. So this is one thing that I talk about in the classroom with teenagers. We talk about how to fight stigma and how to have conversations about S T Is: Is it awkward? Why is it? What makes it less awkward? One of the things I tell them is the more you talk about something the easier it
becomes. Right? So it might start out awkward, that's fine. Maybe by the fifth time you have that conversation about [being tested], it gets a little easier. And then what it also does is when you're confident and you're talking to someone who's maybe back at, like, step one, right? [Someone] who's nervous, they're gonna pick up on how relaxed you are and the lack of stigma in your--and judgment--in your voice. And they're going to get a little bit calmer and maybe they skip to step five faster than you did because it's just normalized around you. So I would say a family provider might not have the herpes conversation very often and be like: "Oh I've known you since you were this tall", and then won't ask the questions like you pointed out. Because then: "Oh they're gonna feel judged. Or maybe I don't wanna know if they have oral sex, that's too much for me to know," you know? Providers are humans and are gonna have all that same stigma, even if they know the hard facts about medical care.
Courtney: Yeah. You jumped in at a really good point because I was gonna add you in a little bit--
Olivia: [chuckles]
Courtney: --to speak to the education piece. So, sex education, I think that the way that people respond to S T I conversations or sexual health conversations, or sex conversations in general, even with a healthcare provider is often influenced by the education that they receive. And in my experience, that education comes from primarily, let's categorize these as three places: for youth, it comes from home, it comes from school, and then the media slash community slash friend groups. And you typically step in at the education level, right?
Olivia: Mmm-hmm.
Courtney: So are you finding that you have to do any combating of generalizations or stereotypes or misinformation that's received by the people you serve in their home life and in their communities, family, friend--or, not family, family's home--their friends, media, and communities outside of home and school?
Olivia: Yeah, of course. I mean we're influenced by all of those things, and we might not even be able to tease out where the things directly came from. This made me think of--so, one of the prompts I do. I just taught S T Is on Friday to four classes.
Courtney: Back to back??
Olivia: Yeah, it was a very, very exhausting day [laughs]. So one of the first prompts I asked in the S T I lesson is what do you know about S T Is? And that lets me just kinda get a temperature check on the classroom, what the knowledge is in the room--
Courtney: Do you say S T Is and they know what you mean?
Olivia: I say sexually transmitted infections and I say S T Is or S T Ds. I kind of cover all my bases. And then later after that, I say, "This is what an S T I is, this is what an S T D is, it's interchangeable." I talk a little bit about like language shifts for stigma. So anyway I asked, "What do you know about sexually transmitted infections, S T Is, S T Ds?" And it's a temperature check, but also I can clear up any misinformation. And I tell them that. I'm like: "Put anything in there that you know. You can say you don't know. If it's something that you're not sure if it's true or you know it's not true but you hear it all the time, you can still put that in there and I will clear it up." Right? And this last class, multiple people were like: " [S T Is are] bad, it's something really bad." And I appreciate that they put that in there because it's very real. That's what people think. And [I] tell them [that] I don't really want to put a good or bad label on anything, I don't think that's helpful. S T Is are a thing that humans get, they're common, preventable, treatable. We're gonna talk about the details there, right? And kinda try to move on. So that stigma shows up everywhere.
Courtney: I was going to ask you about--what was it, what was it--some of the conversations that you are having with youth, is there any shift in dialogue around infections, sexually transmitted infections, and viruses, now that we've been two-plus years in a pandemic? Looking at how--you know, I use this analogy of masks being condoms and social distancing being limiting your number of partners and having to disclose to someone you may have put at risk for exposure. A lot of the conversation to me feels very similar. So I'm curious to know if, in your education now, if there are any similarities that you're expressing in the classroom or the education setting, or any questions even, that are coming at you that are different that have been shaped by this pandemic?
Olivia: So I, of course, I've talked to people. It's right there, of like: "This is how we should have been talking about S T Is forever and just still should." In terms of how we're talking about Covid and who you've been around and [if it's] been unmasked or whatever. I don't bring that up in the classroom quite as much to make that connection just because I think the connection was kind of already there. I think teenagers, in general, know about condoms, know condoms are a thing, so I don't really have to convince them. One thing I actually have done [chuckles], is use the Covid vaccine as a way to talk about H P V vaccines. Because we really need to do better. And the rollout of those was really atrocious when it first happened. And some of that was lack of knowledge. Anyway, it's complex. But I think we should mandate H P V vaccines for people entering school like we do Hepatitis B. So when I talk about S T I transmission, how that works, and then I talk about prevention, abstinence, and what type of abstinence I'm talking about from sex, right? Talking to a partner, getting tested, and then talk about PrEP and Pep--so that's H I V prevention medicine--and then talk about the Hepatitis B vaccine and H P V vaccine. And I say, "Here's the H P V vaccine. This is actually our best defense against H P V for a variety of reasons. And then say, "We have Hepatitis B, most people don't know they have it cuz they got it when they were babies. And you need [the Hepatitis B vaccine] to enter daycare. You need it to enter school. We have a vaccine mandate on Hepatitis vaccines." And I don't say anything about Covid, but it's right there, right? Because there's this heated debate about mandating vaccines. But trying to pose it as like--I mean this is an opportunity. People are talking about vaccines, and let's use this as a way to talk more about the H P V vaccine.
Courtney: Mmm-hmm. And the H P V vaccine is accessible and available to people with penises as well, right?
Olivia: Yep.
Lena: Sure, I mean it's recommended for all children to get around age 10 to 12. Hopefully, before they're sexually active. But the F D A approved the vaccine recently up until the age of 45 for all genders. So, anyone under 45 can still get that vaccine. Did you have anything else to add?
Olivia: Yeah, just--and this is kind of geeking out about sexual health a little bit, but when it was--
Courtney: Geek out! This is the place to do it! [laughs]
Olivia: --[chuckles] So, I believe it hit the market in 2006. And [when] they were marketing it, they were saying that "girls" should get it. And part of that was because there was limited knowledge about all the types of cancer that H P V could cause. But also the only way to test for H P V is with the cervix, right? Unless there's like a visible wart. And so they were marketing it to girls and then conservative people were like: "Oh my god, you're just telling our little girls to have sex. We're gonna give them this vaccine, and then suddenly our 12-year-old girls are just--" whatever, like, there was a lot of sex-shamey stuff there. Which is...hmmm...challenging because it's a cancer prevention tool! And really our only cancer vaccine. Right? So that was rolled out poorly, and that still kind of exists in our culture of this idea that it's for girls. But the reality is people can get cancers on the penis, the throat, the anus, the vulva or vagina, the cervix, like all over the place, right? And the other thing is, again, you can only test people with cervixes. So someone can have it and pass it along to someone else and not know they had it. Sometimes the body clears it up on its own and sometimes it can cause cancer or genital warts.
Courtney: Like how did we sexualize getting cancer? Or you know, or cancer prevention?
Olivia: Mmm-hmm. It's because H P V, certain strains, certain types of H P V, are sexually transmitted. But also it can prevent genital warts, which is, what we think, you know, is an S T I. So the connection was just there. And it's too bad cuz public health professionals were like: "Oh my god, look, we can stop cancer!" And then people view things through the lens they have, with the worldview they have, and especially when you have it only for one gender and talk about girls and "purity" and all this stuff, and then they need it younger. As Lena pointed out, you want people to get the vaccine before they're exposed because most people will be exposed to H P V in their life. So, there's just so much morality wrapped up in the response that people had in terms of sexuality, age, and gender. All right there.
Courtney: Yeah. Do you have any statistics that you can speak to in regards to H P V? Such as maybe its prevalence in penis owners versus vulva owners, who's getting vaccinated, who's not getting vaccinated against the H P V virus or anything?
Olivia: I don't. Do you know any?
Lena: I don't know how we would have statistics on how many penis owners have H P V if we're not able to test them.
Courtney: So would it be like a thing where--let's say I'm seeing someone, and it's a vulva owner who is positive for H P V. If she tests positive and then tells me, is there a way for me to come in and get seen, treated, anything, as a penis owner?
Lena: You can come in and talk about it and people do that a lot. They come and make an appointment with me for that exact scenario. And I end up telling them that no, there's no way to test you unless you have visible genital warts, there's no way to know. The best thing you can do is get vaccinated and keep the dialogue going about H P V. It really bothers me, actually, that certain individuals with cervixes who happen to be due for their pap smear every three to five years might be told they have H P V, and then might feel obligated to disclose that. But everyone else who probably also has H P V, but doesn't have a test, doesn't have a way to test, they just assume: "I don't have H P V." They might even put blame on someone: "Oh, you gave me H P V." Well who knows? You know, that one's especially difficult cuz most people, they don't know their H P V status. And it's not something we recommend testing for in between every sexual partner.
Courtney: It's one more thing that appears to fall on the responsibility of vulva owners, in a sense. Because now it's like: "All right, you're the one who is at risk." As someone with a penis, I can pass H P V on to vulva owners if I'm sexually active with them. I can pass it on without even knowing. Is that right?
Lena: Yes, that is right. I mean, a penis owner could pass it to another penis owner too.
Courtney: Didn't know that! [chuckles] See, we learn every day. Lena: Any gender can have H P V.
Courtney: Mmm-hmm.
Lena: Like Olivia said, it can cause genital warts. It can cause cancer of the cervix, which is the most common type of cancer that it causes, and so that's the one that people know about. But yeah, it can cause vaginal cancer, vulvar cancer, penile cancer, anal cancer, throat cancer. Any genitals could get H P V. So...[sighs] luckily, those other types of cancer are extremely rare. But they are possible and there's no way to test--you know unless you have either a wart or a tumor or a lesion that looks like cancer, we can then biopsy that lesion and find out if it's cancer or precancer. But without any symptoms, yeah, there's nothing you can really do except get vaccinated.
Courtney: Mmm-kay. And so this really just falls on...I guess it's a conversation we need to have with partners alongside [asking] when was your last S T I screening. Also [asking if they are] vaccinated against H P V. Is that something that's encouraged?
Lena: That's such a great question, and I--
Courtney: I'm sorry, I ask really hard questions sometimes.
Lena: It is a hard question and I get this question from patients a lot too and I don't have an exact answer.
Courtney: It sounds a lot just like with herpes. There's not a vaccine, but the most accurate testing that you're gonna get is if the symptoms have presented themselves. And, correct me if I'm wrong, but the CDC does not recommend herpes testing without symptoms, is that right?
Lena: Most of the time. There's some situations where it might be useful.
Courtney: Is that pregnancy?
Lena: Um, not...I mean pregnancy, depending on that pregnant person's situation it could be useful. But there are some situations where it could be useful. Like, say there's a couple, a monogamous couple. And one has herpes and one doesn't know. And the one with herpes is trying to make a decision of whether they want to take an antiviral every day. Some people don't want to do that. The one without, whose status is unknown, could get tested, and what if: "Oh! Well, they have it too! What do you know?" So many people have it and don't know. That could be useful for in the beginning of that relationship for that asymptomatic person to be tested just so they know their status. It might help that relationship in terms of whether the partner goes on suppressive therapy, meaning a daily antiviral, or not. Or maybe some people with multiple partners might have one partner with herpes and one without and they just want to know their status. So there are situations where it can be useful. If someone wants the test, I will order the test for them. I always talk about what it might mean, how to prepare themselves for if it's positive. What does that mean for you? But if someone's coming in and they're just like: "Hey, I'm starting a new relationship, I need some routine screening," yeah, we're typically not testing for that if there's no symptoms.
Courtney: Mmm-hmm. So the request needs to be made for a herpes test, otherwise, you are not being screened for herpes when you request being tested for everything.
Lena: Well, if someone specifically says, "I want to be tested for everything," then I will give them the choice. But I just warn them, you know: "I just want you to think about what's going to happen if you test positive with a blood test and you've never had symptoms, and what is that going to mean for you?" And the C D C has a whole statement about how there's no real change, people often don't change their behavior at all. And so does it make a difference in your life or in other people's lives? And you know, it's fine, if someone wants to be tested for it, great, I just kind of give them a little spiel about: "All right, let's just prepare for what are you gonna do if it's positive?"
Courtney: Mmm-kay.
Olivia: I have a question about that, cuz I hear a lot of things. So, the asymptomatic test that can happen is a blood test that tests for antibodies for it, correct?
Lena: That's right.
Olivia: I feel like I've heard of pretty high false-positive rates...
Lena: There can be false positives, yeah, it depends on the index value, which is the level of antibody. There can be false positives, there can be false negatives since it takes time for the body to build antibodies after an exposure. The viral swab is for sure more accurate.
Courtney: And that's if you're presenting physical symptoms, right? Lena: Yes. You can swab the lesion, the sore.
Olivia: So that's one of the things that, you know, we say, "Get tested, get tested between sexual partners or once a year," in the classroom. But unless people ask specifics, I don't really go into it. But if someone asks specifics about herpes testing--because I think this happens a lot, where people go to a provider, they're like: "I want to get tested for everything." And a provider might say, "You know what? A herpes test isn't really gonna tell you if you have the virus or not." And people feel distrusting of medical care, which is very real and totally fair that people feel like something's being withheld from them and shouldn't be. But then there's some nuance there right? Like Lena's pointing out, [the blood test is] not giving you a real diagnosis for it, for whether or not you have it. And then what do you do with that information?
Lena: And it also doesn't tell you what body part you have it on. Just the blood test alone.
Olivia: Right. So that's a huge thing. So then thinking about how is someone gonna use that information? Cuz I know a lot of people are like: "I got the test, I pushed the doctor for it, and now I feel like I have to disclose but I've never had an outbreak--
Lena: Mmm-hmm.
Olivia: --and actually they told me maybe I don't have it and now I'm just so spun out in my head--"
Lena: Yeah.
Olivia: --because it's such a heavily stigmatized thing, then what do people do?
Lena: That's exactly why the C D C states that they discourage routine screening for asymptomatic people because of the psychological distress that it can cause.
Courtney: Well, I guess if you're asymptomatic and you don't know then you don't know. So I guess there's no real...
Lena: I mean if the index value is higher than five, then you probably did have an exposure at some point. So you have those antibodies in your blood. Maybe you had an outbreak and you didn't notice it or maybe you've never had one and you never will.
Courtney: Mmm-hmm.
Lena: Yeah, I would say once you've got that knowledge it's important to talk about it. I mean the more people talk about it the less stigmatized it will be. But I've also had patients, we were talking earlier about patients who got...not the greatest diagnosis, like they didn't get all their questions answered. I've had people come in and say, "Oh yeah, my last doctor tested me with a blood test. I was positive for type two and she told me--or he told me--I need to be on Valtrex every day for the rest of my life. And so I need my Valtrex refilled." And then I'll be like: "Oh, OK, well let's talk about that. You can be on Valtrex or Acyclovir or whatever if you choose to. However, you may not need that, and let's talk about that." So, there are people out there who are getting this test, they're getting it routinely done when they have no symptoms, they're getting a positive result and then they're being told [they] need to be on medication every day.
Courtney: Mmm-hmm. And I've spoken to people who, after having received the diagnosis from being asymptomatic, they've gotten on the medication immediately, and then they started having outbreaks. Not to say that this is something that'll happen with everyone, but is there anything to be said for giving your body an opportunity to respond to the infection? Or maybe that your body has been responding to the infection all the way up until the point of receiving a diagnosis. Is there a benefit to jumping on medication immediately after, versus--
Lena: Wait, you're saying that you've heard of people who got the positive blood test, started the meds, and then got an outbreak while on the meds?
Courtney: And then started having outbreaks, yes.
Lena: That's strange. My only guess there is that it could be a stress response. As far as I know, that's not a result of the medication itself.
Courtney: Mmm-hmm. And this was just...I believe they got on it to minimize the risk of transmission--
Lena: Sure.
Courtney: --they didn't have a reason to be on it to--
Lena: Yeah, that's pretty much the only reason an asymptomatic person would be on medication. To prevent spreading it to others, yeah.
Courtney: OK.
Olivia: One of the things I'm hearing a lot, especially we talked about H P V--which is a complex thing, and then herpes as we were pointing out--is complex and different in every human. There's just no black and white to this. There's no binary, [it’s not] it's this or it's this. In the classroom, it puts us in a very tricky spot of how do you navigate the nuances? Knowing that when you educate people, especially teens, but I would say everybody, saying very clear statements is very helpful. And how do you balance that with [the fact that] humans are really complex and, you know, like, how many people are walking around with herpes and H P V and don't know it, will never have a symptom, it's a thing that happens to humans like period, end of story. And then also in the classroom when people are like: "Oh my god, how do I not get this?" And I want people to have sex if they want to have sex, you know, that's an important part of life for a lot of people, so...and you don't want fear to infiltrate into that too much, but you also want people to be thinking through things that they're engaging in and it's just all really, really complex. And there's no absolutes in this. Which makes it really challenging. And then of course navigating in the health center, people's responses. Because you can't tell them for sure like this is it and that's it. I have, just on Friday, someone who [chuckles] is explaining herpes. And then someone in the anonymous was like: "Wait, cold sores are herpes?" And I had already said that multiple times. I was like: "These are very common." And still, it's just I could feel in that [person's response] like: "Oh my god. I'm a person with an S T I. I've had herpes my whole life" or whatever. Maybe never sexually active, right, cuz we know that that happens. And that stigma just feels so heavy, especially for teenagers who are maybe just starting to blossom in their [chuckles] interest in sex. Yeah, it's just really heavy and complicated.
Courtney: I wanna take it back to you, Lena, and see do you diagnose people who have oral herpes? Does anyone come in and go: "Oh my god, what is this?"
Lena: Yes, they do, yes. A lesion on their mouth or throat. I diagnosed-- Courtney: Oh, on their throat?
Lena: Yes, you can get herpes in your throat. I've diagnosed herpes on nipples, butt cheeks, thighs, genitals, cervixes, inside the vagina, on the vulva, on the penis. It can be in different places, it's not just: "Must be a cold sore or genital herpes." And then as you probably know, genital herpes is very often Herpes Simplex Virus type one, meaning it came from someone's mouth, most likely. So, yeah it absolutely drives me nuts that there's so much stigma around this virus when it's on your genitals and not when it's on your mouth. It seems so unfair, and I talk to my patients about this all the time. One little anecdote is: I had a patient come in--I just remember this one well for some reason--but she came in and said that her boyfriend was just diagnosed with genital herpes. And he had had an outbreak and she was absolutely furious at him. She was so mad. She said, "He's cheating on me! How could he do this to me! What a terrible person!" And I asked her a few questions, and it turns out that she gets cold sores regularly and she'd had one recently. And I basically told her it's very, very possible that you gave him herpes on his genitals if you engage in oral sex. And she said yes they do engage in oral sex. And so after this long conversation, she ended up leaving the building with a completely different mindset and a prescription for Valtrex.
Courtney: Yeah. This conversation is sparking in me that healthcare and the communication that we have between the patient and provider, these interactions when there is welcomed curiosity and openness of communication, this is how we begin to destigmatize not just S T Is, but sex and communication around sex and being able to care for our bodies and being able to care for loved ones as well. So it sounds like you are doing some destigmatization through your work. And I'm curious to know, what guidance do you have not only for patients who come in and see a healthcare provider but also for providers? How can we destigmatize sex in the healthcare field?
Lena: Just lots of talking, you know? Talking about things. And as Olivia said earlier, the more you talk about it the less awkward it becomes, and the more easy it becomes. And just staying nonjudgmental...the second that someone feels judged, they might shut down and stop talking. And so it's so important to make people not feel judged. And no matter what S T I we're talking about, you know, they're out there but getting the conversation going, making sure that people have accurate information. When talking about herpes specifically, I always, always make sure that people know that cold sores are herpes because in our culture that we live in, in our society, it doesn't seem like--at least from people I've talked to over the years--it doesn't seem like it's a normal expectation that someone who has had a cold sore once needs to disclose that every time they make out with someone new. How is that fair? So why does someone with genital herpes, if that's what we're going by in society, then how come people with genital herpes who had an outbreak five years ago but don't have outbreaks now have to disclose that? I mean, these are just questions to get people thinking, but yes, I do a lot of work in my practice to destigmatize this virus.
Courtney: Yeah. And then for you, Olivia, the destigmatization of sexual health and sex communication in the education space, what does that look like for you? Is it kind of the same thing? Having conversations? To me it seems like you mentioned temperature check with the room, assessing where people are, who you're speaking to, and then inviting them to ask whatever questions they have. Like, is that part of your destigmatization practice in the education space?
Olivia: Yeah, definitely. And obviously, I talk about it a lot, so I'm very comfortable talking about it. I try to have some humor injected a little bit [chuckles]. So yes, all of that and also trying to be really clear, because there are so many nuances. Being really clear about people's rights. And [reminding people that] this is a common thing that happens, it's OK, this is part of being a human. Also, one thing that Lena was making me think of when we talk about accessing sexual healthcare, of course, especially with teenagers I want like: "Where can you go?" We have so many school-based health centers in Oregon. Which is, like, unreal that they can walk down the hall in their school and get an S T I screening. So really reminding them where they can go as young people. And we talk about the County Health Department and Planned Parenthood obviously. But talking about where they can go, what services they can get, and also kind of what their rights are in the room. And we tell them like you have a right to be respected, you have a right to change doctors if you had a bad experience. And also recognizing that's really hard to navigate the healthcare system. You might have a right to switch doctors, and also that is still difficult. Again, balancing that nuance. And the other thing I say to people is that talking about sexual health can be uncomfortable and that's fine, so if they have a question they can write it down. So before--I say, before you go to visit--you can write in your phone questions you might have that you can ask out loud. But you can also write it on a physical piece of paper and hand it to the doctor, right? If you don't want to say it out loud and then you can hopefully get your questions answered. And that you have a right to them! And if they answer in a way that you don't understand, you have a right to ask. People feel like their agency's taken away oftentimes, as soon as they enter the medical health field, for good reason. Like there's lots of historical reason for that and current reason for that. But trying to empower people in medical spaces as much as possible feels really important, especially for things like S T Is.
Courtney: Mmm-hmm. So, here we have the Educator/Practitioner perspective. This went further than just talking about herpes. And it went further than just talking about herpes stigma. We are, in a sense, speaking to this allyship that can be fostered in the medical space and the educational space. But we as people, who are consuming the information, we are pursuing it, we are educating ourselves, and we are learning how to navigate this space. Sex in itself is stigmatized. And again, going back to the whole "sexual health is mental health", this speaks to how we care for the entirety of our being, how we care for partners, how we interact with other humans. So, take this information if you are someone who struggles with communication with partners or providers. Just know that it's OK to be curious and you can always come back later and revisit those questions that you may not have known that you had when the opportunity comes for you to be able to do so. So if you're someone who's sitting around and you're like: "Oh! I never realized I should have asked this question or I didn't know this was a concern." Then you can reach back out to your healthcare provider. If you don't like the answer that you're receiving from your healthcare provider or the sources of information that you are going to, then it's OK to make an effort to switch or ask questions from somewhere else. But yeah, my overall goal here is just for people to understand that the destigmatization of S T Is is also the destigmatization of just shameful acts or any sort of thing that we feel like we can't really talk about. Like let's destigmatize open communication, right? Lena, Olivia, is there anything that I haven't asked you or that we haven't touched on that you want to touch on?
Lena: I would just add as kind of maybe a last thought: That at Planned Parenthood, we believe that having a happy, healthy sex life is very important. And we're talking about mental health here. Having a happy sex life is very important to one's mental health for most folks. And so, if you are living in shame or in fear, dealing with constant shame, fear, anxiety about S T Is, you know, come talk to us. Talk through it and you may be able to have a happy, healthy sex life that then could help your overall mental health. So, yeah, just tying it all together!
Courtney: Yay-yuh! Olivia?
Olivia: Yeah--
Courtney: Don't feel like you have to add anything--
Olivia: Oh, I will though! Of course.
Courtney: All right [laughs].
Olivia: I think the other thing with that is that stigma that we feel, we don't own it. It's not something that we created really, right? We get stigma from, again, home life, school, media, friends, peers, everything around us...I mean think of how many herpes jokes end up in movies and TV shows, right? We hear that and it just kind of builds up. And so the stigma we're feeling, the shame about ourself that we're feeling, that's not ours. So we can allow that out. And just consider: Imagine what it would feel like not to feel shame and stigma around your sex life and around your body. And how freeing that is! And what that will do for your mental health. So even if you can't get there yet, just consider it. Just imagine. Because we absolutely can have situations where people feel empowered and have happy sex lives.
Courtney: All right. Thank you!
