← Something Positive for Positive People
Something Positive for Positive People
SPFPP 374: Storytelling for Stigma Minimization - Live from STI Engage 2025
00:31:36
Loading summary
Transcript29 lines
- [00:01]
Courtney Braym
All right. Hello, everybody. My name is Courtney Braym. I am the founder, executive director, podcast host, yoga teacher, peer support facilitator. I think that's it. Of something positive for positive people. This is a 501c3 nonprofit organization that has started out supporting people navigating herpes stigma. It began in 2017, just as me interviewing people who are living with herpes about their experiences. I'm very honored to be back at Sci Engage. Back in the day, it was STD engaged. I had issues with that, the word disease over infection. And it's nice to see that that has changed over the years. So what I want to show y' all real quick is what we presented or the abstract that I presented the first year that I was here. How you do this? Oh, this button. All right, I got it. This was an abstract. I mentioned that I started out interviewing people living with herpes, and the reason for that was because I learned that people with herpes had suicide ideation. And I just asked of the people who were in the support groups that I was in. I have herpes myself. I forgot to leave with that. But I started to just ask, like, okay, what you been. Your experience with herpes? And over time, what ended up happening was I developed somewhat of some momentum, a community, and was able to just go, hey, I have these survey questions. Can y' all answer these? And then we were able to get a lot of responses just off of the expressions of vulnerability, I guess, from my own experience, as well as the people who've been willing to come onto the podcast and share their own experiences. So we had asking the question, have you ever had any of the following as a result of your diagnosis, one of which was suicide ideation? And as you'll see here, it's almost 49%. And this was in 2019, when I could only get access to, like, 100 people. So since then, the podcast is at, like, almost 400 episodes. So these are all interviews with people living with herpes, couple solo episodes, as well as interviewing sex therapists and people in the world of public health to get more of a scope of what people might be experiencing. So for today's objectives, also, I don't have any disclosures. It's just me. I have a board, and they're cool me being here, but I just want y' all to really be able to witness what community can look like. I want for y' all to have more of an expansive, somatic understanding of what stigma is and what it feels like. So we're going to Do a thing that's going to require you all to put y' all phones down for five minutes. People with phones. And then, yeah, we'll be able to see sort of what the long term impact of safe spaces. I don't know why I wrote that. I always say this. I don't believe in safe spaces. No offense. There are only intentional spaces. So the intention that we create here is really to minimize stigma. And I use the word minimize over, like prevent or eradicate or destroy or end, because these are violent words. And we don't want to perpetuate stigma with any violence or negativity. So I'm only going to give you all like a minute to answer. But I'm curious to know if anyone has any working definition for themselves, themselves of what stigma is. Anybody can just blurt it out. What is stigma? You can say that louder. Ooh, judgment. What else did somebody say? Lies. B. Oh, bias. All right, I appreciate that. So a working definition that I like to use is from Irving Goffman. He's the author of the book Stigma Notes on Management of Spoiled Identity. Spoiled like spoiled milk? Not like spoiled like you had everything handed to you. And so with that definition, it is an attribute that makes a person feel less whole. Simple as that. That's like the most simple definition that I. That I've seen or heard. And I like to use that to work from. So what I want to do next is just for the next couple of minutes, if you need to grab your phone, you. You can do that. But I would like for people to just ground themselves real quick and just kind of place your feet on the ground, sit upright in your chair. I love this crowd control. All right, so if it feels safe to you, look around real quick, Just notice what everything looks like around you. And then I invite you to close your eyes. And with their eyes closed, see if you have to, like, be in first person. I know exiting the body for some people can be a little bit traumatic, but for those of you who feel comfortable to just visualize yourself, maybe just looking overhead. But if you're someone who's in your seat and you need to just be looking outward, you can do that as well. I want you to take a full exhale, completely emptying out the lungs. And then when you inhale, feel the lungs up with breath as much as you can. And then exhale, empty everything out, inhale, bring everything in. And I want you to allow yourself to maintain that rhythm of breathing just over the next two and a half minutes. Now, while you're breathing. Whichever route you went between first and third person of viewing yourself, I want you to think about your identifications. Everyone here, I believe, works in some capacity with ncsd. So we have an identity as maybe an employee or an employer. We might be parents, we might be siblings. And what I want you to do as I go through each of these identifiers is just envision sort of an energetic line coming away from you into, like, a little baby version of yourself, right? So parent, child of parents, sibling, employee. Maybe you're a community member of some sort. Maybe someone's depending on you familially. Friend, relationship. These are just some of the ways that I think many of us can readily identify as how we show up in the world. Right? So you're here, you're breathing, and you're able to see those energetic lines. Whatever your favorite color is, branching out from where you are now into these little baby versions of yourself. Okay? Continue to breathe. And I want you to sort of take a screenshot of all the identifiers that you have around you and just maybe think of the number in your mind, because maybe there are things that you identify outside of that. Maybe socioeconomic status, perhaps race, gender. Okay? And once you get that screenshot, I invite you to take one more breath. And then right after that last exhale, you can begin to flutter your eyes open. Ain't nobody pull their phone out. Look at y' all. And real quick, you can just take a couple neck rolls, rub your hands open, close. You can stomp your feet a little bit. All right, now, we took that screenshot. I want to know if you can just by show of hands or if you ain't got enough hands. Like, how many energetic lines did you have going away from your body? We can shout some numbers out or throw our hands up. What we got 10? Okay, more than 10. Anybody have more than 10? Anybody want to share what? Some of those were just some identifiers. And you ain't got to if you don't want to nurse. Okay? Okay. Grandfather, what'd you say in the back? Therapist. I heard queer. What else did I hear? Auntie. Okay, spouse. All right, son. Okay. How are we on time, y' all? I've never done this in 20 minutes, so. Yeah, I'm jumping around here, too. So I just wanted to name some observations if anyone, you know, if there was anything anybody wanted to share. You got, like, 30 seconds, so we ain't got time for the. Oh, I don't want to share. Does anybody want to share any observations as we Went through that visualization. What you got?
- [09:07]
Unnamed Participant
Well, the first one that I thought of was native. Well, yeah.
- [09:23]
Courtney Braym
So community and what communities you're a part of. Right. Okay, thank you for that because I think that that is really important as well. But is there anything else that you wanted to add to? Okay, you jumped ahead. That is exactly the point that I was going to make about what people who are experiencing stigma kind of go into. Would you say that it felt like one of those baby extensions of you were maybe heavier than the rest as you sort of went down that dark.
- [10:00]
Unnamed Participant
Road a little bit? I feel like it's. I live in there that I grew up knowing. And so it was amazing. Even though I'm not Hispanic, it's just there. So I think that's like a lot of experience.
- [10:25]
Courtney Braym
Thank you. Thank you for sharing that. Has anyone had a similar experience of that? Everybody close your eyes and raise your hand if you did. Okay, we got a few hands. Everybody put your hands down before everybody opens their eyes. Okay. This is very synonymous to. From what I've experienced in talking to people of what people who are struggling with stigma experience. So while like we try and say stigma is this and we verbalize it, like on a somatic level, that's what it feels like. It feels like an extreme over identification with a fragmented part of sex. And a lot of what I speak to is really just identity validation for people to see themselves outside of that part of themselves in which they're over identified with. And through presence, practices of presence, we're able to take those lines of all these identifiers and bring them home. But that's like more yoga than what we have time for today. So I'm sorry to just kind of leave y' all there, but. But I wanted to speak to some of those observations. So we saw the statistics from the 2019 SCD engage that I went to and presented at. And now we're looking at the 2023, 2024 survey that we conducted through something positive for positive people, which has now become so much more than just me being a dude with a podcast asking people who are in these support groups, hey, you want to talk about herpes? Because now we're able to get a. A lot more responses. That first survey was 100 people. This one was. I have a slide later, but this stands out. I always say that sexual health is mental health because the over identification with one's sexuality as one of those identifiers. When someone gets herpes, it's not, I have this diagnosis. It becomes I Am this diagnosis and the weight of that, what I was trying to speak to. I ain't mean to, like, try and put words in your mouth or your experience is like, the weight of that. It just makes a person forget all these other aspects of themselves. And so the identity validation piece is just being a space that reminds people that you are whole. Going back to Irving Goffman's definition of stigma, right? That attribute that makes a person feel less than whole. All right, so I have to go through these really, really fast because it's like a few screenshots, but the slides are in your. Okay, thank you. All right. Because I just did it. I ain't gonna lie. I put the rest of this presentation like, I modified this yesterday because I asked the community. There was someone who reached out for support, and I was like, damn, this would be great for the presentation. So here we have someone. Hold on, I want to play this. Oh, no, it won't play. All right, never mind. It's somebody texting. So I thought it was real cool to see, like, somebody texting while this is popping up. But the synopsis here is that someone reached out to me on Instagram and they just wanted to share their story theme for today, Right? So she had no expectations of what she was going to get out of it. She appreciates what it is that we do. And this is as a result of a community that's been going on since 2017 that's just perpetually stayed in motion of being a space for people to share their stories. I'm about to click through, so if you want to speed read through the rest of it, you can. But essentially what we have here is that someone was in a relationship for five years, disclose to the partner that they have herpes. It's a non monogamous relationship. Partner's like, I want to do this shit no more. Okay, so here's what community support looks like in action. I just shared that screenshot and made everything anonymous and just asked, hey, if y' all have any words for our friend here, please share them. So we got a lot of. Some of these responses are very extreme. I didn't put all of them up here, but here's some of them, right? Like, normalizing not just the stigma of living with an sti, living with herpes, but also normalizing that the relationship structure. So we talk about stigma and identifiers. We're dealing with someone who is non monogamous. We're dealing with someone who was in a relationship who's also dealing with a breakup so there's these other identifiers there as well. So here's the kind of support that we're able to get from being involved with, engaged in community. And this is one of the things that is so healing for people, because now this person is able to see their self, themselves outside of just their herpes diagnosis. Here's some more if y' all want to just take a moment to read these. Yeah, I mean, I had the general consistent. I don't know if y' all got any ideas based on what y' all saw. I'm assuming this dude probably just didn't really want to say what the real reason was and just kind of dismissed it off the herpes. So what you see here is, like, these are all different. These are all different responses from different people. So, like, the community is very apt to show up for people who are willing to be vulnerable and share their stories, as long as there's an intentional space for it. Everybody knows Courtney Brain Instagram. Y' all can follow me. Courtney Brain, all one word. My Instagram is a space for minimizing stigma. Minimizing. I ain't trying to kill it, end it, destroy it, erase it, eradicate it. It ain't going nowhere. It's too much money to be made off medications. All right, so the beautiful thing here, I got consent to share this and the individual. I just let her know, hey, look at the stories. Like, you can see the support. This is what she sent y' all. This part, next slide almost made me tear up a little bit. Her sister reached out to me and was like, oh, my God, this is my sister. And I. Wait, did I say, oh, I. I unsent the message. I was like, no way. Are you serious? Like, I was really enthusiastic and excited about it, but it was real cool. Like, that this made it back to her sister. Her sister was able to see that she was getting the support that she needed. She knew that she was going through it, and she really didn't have much of a way to be supportive to her because she doesn't really know what this person's going through. Like, she can be there for her and listen, but there's something about that identity validation piece that is oftentimes missing. And fortunately for me, like, I don't have rules to abide by letters behind my name. I can just press record, start talking, say some things, put it out there, and people maybe reach out. They resonate or they don't, and I get whatever feedback I get. I know, like, a lot of people don't have that privilege of being able to be as open and vulnerable. So I feel like it's a very purpose driven thing for me to be able to be transparent about what my story is. And then I told her I was using this for the presentation. You see, hey, and you can see the timestamps on there. I was working 5:18am but something that's also relevant here is that the power of this storytelling has created sort of this gravity drawing people in who also want to not only share their stories, but also because of the intention, wanting to get involved in a way that we're able to get survey data. So I'm able to understand the something positive for positive people audience. I just threw like some bullet points up there. 14% of respondents are male. So we're dealing with mostly women and non binary people. The whole thing about dirty. So what I love about our surveys is that we get to get to the nitty gritty of things and find out, like, what, all right, what is dirty? What are some of these stigmatizing things that people make assumptions about for people with herpes? And so we look at before people's diagnosis, whether or not whether they've tested positive for any other STIs since their diagnosis. And you see the differences here. And I believe that there's a positive correlation between someone getting an STI and then being like, oh, shit, this is real. Okay, let me be a little bit more communicative. Let me see what resources are out there. Because you really don't have a reason to until you have a reason to. Patient provider communication. Oh, that was very important. So we were able to see the patient provider communication about STIs between a health care provider initiating conversation about sexual health with the person or the person initiating discussions with their provider about sexual health. And you see 30% and 34% are never like, no one in these periods are talking about sex and sexual health. So we're able to see like a lot of what many issues are outside of herpes and sexual health. But also the communication component. Looking at STI prevention. I don't like that word, but it's what everybody uses. Prevention to me means, hey, if we do this, this will not happen. I like minimization. It's on everything because we're minimizing the risk. You can use a condom. Wrong. You can use a condom, right? And then just be like, oh, there's things that can go wrong. I don't have time to really go into the ease of talking about it. Communication is a very Important thing when we talk about, like, how unethical or dirty people with herpes are, what we see is that 87% of people have disclosed their status to a romantic partner despite how difficult it is. So 37% say very difficult, 36% say very. Say just difficult. So that's a very high number of difficulty for talking about it. Talking about safer sex practices, condom use. 73% of people with herpes never wear condoms for oral. So, like, people with herpes aren't just, like, unwillingly passing it on to partners or anything like that. A lot of people are consenting to sexual acts with people with herpes. These are things that we've been able to learn. I'm probably like, over. Okay, cool. So that full survey is like two hours long. If you want more information, hit that QR code, the passwords, no stigma. Please don't share this because a lot of people bought tickets to this conference. And so, yeah, I want to just like, I don't want the word to get out. Did any of y' all go to the conference last year? The Herpes Stigma Conference? Oh, don't tell nobody about this. All right, so the website for more information is something positive for positive people. It's just spfpp.org I'm Courtney Brain. TikTok. I'm. I. I really don't take talk. So if you go there, you see like a post every few months maybe. But I'm most active on Instagram at Courtney Brain. I'd like to open up for any questions. I think we only got like five minutes, right? All right. Okay, thank you. Wait, wait. I saw another hand.
- [21:11]
Unnamed Participant
Professional. Is that like how you, like, use.
- [21:13]
Courtney Braym
Yoga in your settings? When you say clinical, what do you mean? Oh, no. So I have a 200 hour that really taught me how to put people in postures in a 300 hour certification that taught me more of the philosophy. So, like, we want to. If we want to go there, we can. But I don't. I don't know if we do. But the way that I use it is really for. There's a concept of the koshers that speaks to the body, the energy, nervous system, mental, emotional, and like bliss body. Like, oh, wow, sorry. I will just kind of talk to people from that lens and just kind of see what information they're giving me. And then use practices of yoga, whether that be movement, breathing, meditation, self reflection to help guide them. Kind of like what we. The meditation we did where it was like, people's identity is scattered, like, find out where they Are. And try and bring that home with presence. Does that answer your question? All right. I'm a yoga therapist in training, so I'm, I'm going through that. But, yeah, I. I can't really say, like, yes to that yet. Didn't. You were second.
- [22:30]
Unnamed Participant
Okay, so.
- [22:32]
Courtney Braym
So I, I thank you for sharing that.
- [22:37]
Unnamed Participant
This is the first time I've ever shared.
- [22:43]
Courtney Braym
Y' all see the power of storytelling. Just saying, power, storytelling.
- [22:57]
Unnamed Participant
And one thing that irritates me, because I have to put a mortality. So in practice, right. Of the screening to happen, unless you show up with symptoms or disclose, I know I had unprotected sex, whatever, with someone who has herpes, you're not going to get tested. Right. And there's tons of reasons why. I think the only reason I got tested, I mean, I got screened out also because, like, you know, today we're going to talk about sexual health. All this other stuff, it's kind of a real mess. So what I find interesting, and what I'm curious about from the people in this room, right, is you might work in an Aztec clinic. You might be dis. You might be doing these things. Things. But in practice, it's very rare to even test for herpes or screen for it. And so there is. Obviously, folks like myself do have suicidal ideation. There isn't a wildly massive psychosocial burden to this, but clinically, it's not like, a priority. And that's no judgment. I understand the reasons why, but. So how do we reconcile? And I just love that you are here tonight talking about this because there is so much focus on syphilis, gonorrhea, hiv, you know what I mean? But this kind of goes like, you know, left alone. And I had a provider tell me, you know, we can treat it and, like, you're not going to die. It's not hiv. You're not going to die if you're not treatment. But psychologically and mentally, this can be so much damage without. There's no U equals U for me. Right? So, like, I don't know, I just wonder how this is. I just find it fascinating you're talking about this in this space because it's so powerful, but in reality, like, as the folks who are the gis or the clinicians, like, how do you reconcile this in the work that you're doing?
- [24:48]
Courtney Braym
Well, we got like 30 seconds.
- [24:52]
Unnamed Participant
No, actually six.
- [24:54]
Courtney Braym
Six seconds.
- [24:55]
Unnamed Participant
Oh.
- [24:58]
Courtney Braym
So I've had conversations with people throughout. And while there's, like, stigma, one of the things that I continue to see is that, like, there's no prioritization of it. Right. Like there's the psychological and the emotional piece of it, but that's really it. Oh, what y' all got?
- [25:17]
Unnamed Participant
I will share. One of my patients is in a clinical trial for a herpes vaccine and the idea is that the vaccine will boost your immunity, that will prevent you from having outbreaks. So there is that. That's what the clinical trial suggests. So.
- [25:35]
Courtney Braym
There'S. Yeah, there's a lot of stuff happening that like is a lot of people wouldn't know about until they're in a situation. Like there is another medication for like people who might be in chemo or super immunocompromised to be able to take that apparently is more effective than the generic brands of medication that we have. But a lot of people don't know about it and there's some petitioning happening now to get that like publicly available. I saw like five hands just went up.
- [26:04]
Unnamed Participant
This was quick in regards to, not necessarily with my parenthood and we were advised to never group these tests which I did what I wanted because I disagree with that. But a lot of times we were advised that because sometimes patients were like self pay or out of pocket or due to high co and stuff for those tests. So some of it connects with that. Yeah, they're not covered for like the free st and the prevalence of like 400ft was another reason why we were told not to test. There was like everyone has oral so it's always going to be positive. I was like wouldn't you want to know?
- [26:35]
Courtney Braym
We have one here.
- [26:36]
Unnamed Participant
It's more so a comment you earlier the slide said sexual health is mental health and that is insanely true. I feel like if you aren't in like the best mental space you can make very risky sexual behaviors. So yeah, just. And you killed it on your time.
- [26:59]
Courtney Braym
So thank you. I was like 20 minutes kid, show your hand up.
- [27:12]
Unnamed Participant
But I have found that the number of people living with herpes is in the 80% if I'm not mistaken. So I think a lot of the reason too that they're not testing for that is because you can't contact. Right. So you could have had this and been living in this for century to go home and search out whatever it is and they may not be the right. Yeah.
- [27:37]
Courtney Braym
Yeah.
- [27:42]
Unnamed Participant
But I think a lot more people are living with it than to know or they are choosing to admit. So it's great that you have the statistics but I do think there's quite a few more that are not counted because again that Stigma and the shame pain that comes from it.
- [27:59]
Courtney Braym
And I do need to. I forgot to preface this with I hear from like, worst case scenario people. I believe that most people living with herpes are okay. They're either in a relationship or unaffected by it. They don't have outbreaks or they just don't know they have it. Like, ignorance is bliss. Right. When I hear from people, it's they just got diagnosed or the relationship they were in that took their mind off of everything has ended and now they're having to get back out into the dating world world. But oh yeah, herpes was in the title. I was going to say, like, do y' all feel like we hit all the objectives? All right, everybody, Everybody get the somatic experience. Did you get the example of how community in action can be supportive to storytelling and then whatever that third one was, Minimizing stigma. Yeah. Okay, we have two minutes worth of time left. If anybody has any questions, any feedback statements, anything.
- [28:59]
Unnamed Participant
Do you. In your podcast, are there any topics bridged about disclosing partners?
- [29:05]
Courtney Braym
Yes, episode 299. So this is. One of my board members is Dr. Eveline Molina Dacker. She is a family physician and she speaks to the stars method. We're going to have a workshop actually July 21st where she's going to come on and I'll have a zoom link for anyone who wants to participate and she's going to go over it. It's a two hour workshop where we talk about like essentially how to have safe sex conversations. Safer sex conversations. And it's not exclusively about the sex and the sexual health. It's about safety, turn ons, avoids relationship intentions, and then sci status. So she's going to teach people how to navigate that conversation for themselves so that they can go into a disclosure. I hate that word too because we're not signing legal documents. It's not a confession, it's a conversation. So she's going to give people that practice and that resource to be able to navigate this. And yeah, but episode 299, I interview her and we apply it to herpes. So if you just google spfpp299 it should be the. It will be the first thing that comes up. We probably got like 30 seconds left. I can't believe we got this far ahead. I was and my screenshot presentation. What you got everywhere. So I'm from St. Louis, Missouri. My home was affected by the tornado, so I kind of been a nomad for the past like two weeks. So I'm on the road. I'M in a house, sit in San Antonio in June, and then I'll be able to go back home. Insurance check cleared today, though, so. But, yeah, it's virtual. But I plan to move to New York in the fall, so I'll probably be in Brooklyn. But everything's virtual. We talk to people across the world. You wouldn't believe how stigma is different around the world. I should stop now. All right, thank y' all.