PLEASE NOTE: This is a minimally-edited transcript that originates from a program that uses AI.
Anita Rao 0:00
I was am and forever will be a musical kid. And the first one that really grabbed me, so much so that I memorized all the lyrics and learned how to play the songs on piano was rent.
Rent is the 1996 musical exploring life and love in New York City against the backdrop of the HIV AIDS epidemic. As a 90s kid, the storylines in that musical introduced me to a much more complicated picture of life with HIV than the one I was learning about in school, while some of the nuance around transmission and treatment was definitely lost on me, then that musical did plant a seed of curiosity that's only grown over time. How does living with a condition that is so deeply stigmatized affect who and how we love thanks to incredible scientific advances, getting a diagnosis of HIV today is no longer the death sentence it once was, but living well and building a safe and robust love life takes treatment, testing and A whole lot of tenacity. This is embodied. I'm Anita Rao. About half of all HIV positive people in long term relationships have HIV negative partners. According to 2012 data from the World Health Organization, one couple who has been living this statistic for more than a decade is Eka Nasution and Rainer Oktovianus. They were both born and raised in Indonesia, and since 2016 have been living in Canada, where Rainer works as a photographer and UX designer and Eka works as a Project Management Professional. Eka and Rainer, welcome to embodied.
Rainer Oktovianus 1:58
Hi there.
Eka Nasution 1:59
Hi there.
Anita Rao 2:01
So I would love to start with a story of how the two of you met. I know that it was at a film festival back in 2010 and sparked by a bit of a technical snafu. So Rainer, will you tell me that story and what attracted you first to Eka,
Rainer Oktovianus 2:17
yeah, absolutely, it was actually my heartbreak era, like I've been in a relationship with guys that breaking my heart. And I thought like, Oh, this is I'm not going to find anyone else. And so I'm like, I've been busy with the LGBTQ movements in Indonesia. I joined a film festival that's called Q film festival as a film programmer, as their security coordinator, and eka was there as a volunteer. His responsibility as a projectionist. So basically what he needed to do insert that DVD and hit the play button, which he cannot do. And I was like, waiting like, five minutes. The screen is blank. The audience is like, waiting in there. And I went up to the projection room, and he was like, panicked trying to turn on the DVD player. So I said, like, move. Like, I've been very fussy with him, like, so I played the film eventually, and I stayed there, and we chat a bit, and then I saw his like, biceps. Like, okay, kind of cute, but maybe stupid. Like, kind of control the DVD player. So from there, we chat, we exchange numbers. We kind of dated Since 2010
Anita Rao 3:49
Well, let me turn it to Eka now, the bicep wielding projectionist. So the two of you got together about a year or so into your relationship. You decided to go together to get tested for HIV. Eka, tell me a little bit about what initially motivated the two of you to get tested as a couple.
Eka Nasution 4:10
I have a very best friend, fig tree, and then the fig tree was like concerned about our health feature. Understand that Rainer and I are a couple, so I feel like it's my responsibility to know what's my sexual health is all about. And also like for Rainer, as well as that, I need also to protect Rainer, because at the time, I do not know what is my status. Is it positive or is it negative? So I need to make sure that I protect the one that I love that is Rainer.
Anita Rao 4:39
So you went together to get tested. Eka got his negative results back about a day after getting the test, but Rainer, you still hadn't heard your results, so the two of you went into the clinic together to get them. Can you take me into the moment of sitting with that provider? What do you remember feeling and thinking as you got. That positive result.
Rainer Oktovianus 5:01
I'm familiar with HIV, education and awareness, so like, I've been tested in prior years, but that year when I got tested, I got his results, and mine was just, like, pending, and then they want me to come back, and I know, oh, this is something, but I'm not panicking or anything, because I know that if I'm positive, that means I need to get treatment right away. So when the doctor told me that, hey, you're positive, and I'm like, okay, like I'm I'm super calm. But the funny thing is when, when I told eka, he was the one that break down and cry and like, thinking, Are you going to be okay? Like, as if I'm going to die? I said, Hey, come down like this is manageable, but like, I trust him to be able to share my my very private results, because I don't have family or anyone to share that feeling at that time,
Anita Rao 6:00
that sounds like such an emotional moment. And it seems like, eka, you were processing things in a really different way from Rainer. What was going on for you upon learning about his positive diagnosis?
Eka Nasution 6:16
What was happening at the time is that I was so afraid that he will end up like my brother, because my biological brother was diagnosed with AIDS, not just HIV. He was already aids, and I did not want, and still do not want him to end up like that from my brother's experiences that he received like stigmatization from the doctor itself, even from the nurse, the doctor, the nurse, did not want to touch him. And then it's kind of like I feel so bad, and I do not want Rainer to endure the same experiences, and also the pain and that was happening. And I at that time, I could see actually the struggles that both of us would face in the future.
Anita Rao 7:04
Yeah, stigma affects so many aspects of the experience of living with HIV and prevents a lot of people from even getting the kind of treatment that they need. That makes it really livable. But Rainer, you started on that treatment pretty immediately on antiretroviral therapy, which meant that in a few months, you became undetectable. Talk to me about that experience of adjusting to the medication, how it affected your body.
Rainer Oktovianus 7:33
Yeah. So from 150,000 viral load, I was referred to a doctor that specialize in HIV, and the doctor, he prescribed me with ARV or antiretroviral, and he gave me this two pills that I need to take every single day, morning and night. And the morning one is fine, but night is making me super drowsy. I know a lot of other positive people, you know, having these side effects, like vomiting, nausea and those kind of bad effects, but not me, like I'm taking it pretty okay. It's just the drowsiness. So I cannot do my work, my activities after I'm taking that second pill in the night, and I'm very diligent in taking the pill, because I know that if I stopped, then my body will become resistant and I will need a higher dose. And within, I think six months, I was undetectable, basically. And the physician told me, Oh, that's good. So, yeah, just keep doing that, and then I basically changed my lifestyle. I mean, like, I'm already, like, I like working out. It's just like a release out of life. And I keep doing that, I'm trying to stay positive. I think the mental side is more important, because I'm very curious on Okay, so what now, you know, trying not to infect other people or get new infection, especially with eka, yeah.
Anita Rao 9:11
Well, yeah, tell me about how the diagnosis affected your relationship. We're going to talk in a little bit about some of the scientific information that has come out more recently that has really changed the dynamic for couples with mixed status, but at that time, there was less information available about how antiretroviral medications could prevent sexual transmission. So Rainer, what were you you thinking of how you were going to approach your intimate relationship with eka, given your HIV, positive status,
Rainer Oktovianus 9:45
Oh man, like that. Time was awkward, I must say. I mean, it's challenging, because we have to navigate this new area where I'm positive my partner is negative, and how do we. You know, maintain that relationship, especially the sexual side. So we still use condoms. We try not to have sex when I have, like, a cut or a mouth sore or cold, like I have to be super, super healthy before we're having sex, and it's kind of annoying,
Anita Rao 10:20
but yeah, so much diligence and care, yeah, yeah.
Rainer Oktovianus 10:24
And he basically kind of because, even though he doesn't tell me, but I know he's scared, like, Yeah, and he's trying to be careful, and I respect that, and we always talk about it. I think the most important thing is the communication we open about everything, because this is important for both of us, not just for me, but for him as well. If we want to be together, we have to talk about everything, and it kind of works from there, but we still using condoms on like every sex sessions, and even though I'm undetectable, he's still unsure if I if I must, you know, be frank and and that's okay, like it's, it's his body and his choice. And we use condoms. I think, for so many years, almost a decade, I think
Anita Rao 11:16
Rainer and eka went through a lot in that first decade as a couple, including learning about new science that would radically alter their sex life, and making a big move from Indonesia to Canada. We're going to talk about all of that after a quick break. We'll be right back. This is embodied. I'm Anita Rao. 1.2 million people in the United States LIVE with HIV, and the majority of them are on antiretroviral therapy that can reduce their viral load so much that it's no longer detectable from a blood test.
Bianca Ordoñez 11:55
I take one pill a day, and I'm completely healthy. Not only is my body healthy, but I protect the people around me. My soon to be husband is HIV negative. Our daughter is HIV negative. I'm undetectable. The people that love me can trust that I'm going to live a long and healthy life, so long as God decides that I remain on this earth. And for now, it's only one pill a day
Anita Rao 12:22
that's Bianca Ordonez, who chronicles her life as an HIV positive person on YouTube, achieving undetectable status like she has, comes with many health benefits, including that you can't transmit the virus through sex. In other words, undetectable equals untransmittable, or you, equals you. It's a game changing development for sero discordant or mixed HIV status couples like Rainer octovianus and eka Nasution. So before the break, we touched on some of the ways that rainers diagnosis affected how the two of you approached sex and intimacy and Ekka, I want to know how you struck that balance between supporting Rainer while also acknowledging that you had some fears and questions.
Eka Nasution 13:09
Yeah, so at a time, actually, I'm pretty concerned about his hell, because he always got sick, and then I was so concerned, I always like came to his place and then taking care of him. And then at the end of the day, actually, I just decided, okay, this is taking a lot of like, cost to go back and forth from my place to your place. How about we just live together? So we did live together then, and then I took care of him, and he, of course, he took care of me. Then at the time, actually, I wasn't afraid about touching him. No, fine. But then Rainer was right. Actually, I have some concern when I had sex with him, but then there was, like, condoms. So I used condoms, but at that time, it feels restricting, instead of constraining, for me, that's the word. It feels restricting to feel the joy of sex, because sexual health is health for me. Then also, like I felt like I did not satisfy him enough, as I also assumed that he could also feel that he did not satisfy me. So like the mutual satisfaction is basically can be interpreted as in, like, you know, this like relative satisfactory between the two of us. It's not like a absolute, absolute satisfaction.
Anita Rao 14:30
Yeah, I think you're bringing up a really good point, which is that, you know, sex is so much more than the physical. There's all the emotional pieces. And when you're navigating something like HIV, there's a lot going through your mind at any given moment in terms of how comfortable you're able to feel and how much you can let your guard down. And there was a really significant moment that happened in 2015 2016 that we've alluded to that was a big turning point for a lot of. Discordant or mixed status couples, which is this u equals u concept, which means that, essentially, if you are undetectable, you cannot transmit HIV through sex. So Rayner, you learned about this concept first at a conference. What did it mean to you to learn about it at that point in your journey?
Rainer Oktovianus 15:20
The first time I heard you equals you is like, mind blowing. Like, wow, this is really happening. Like, I've been living undetectable, and I don't know there's a term for it, there's group of people that are experiencing same as, like, an in my situation as well. And it feels like a huge boost of confidence, because I know that I cannot transmit to other people, and I can always live or like live normally and enjoy sex more freely and you because you, feels like a breath of fresh air that I can share this information to other people, to people that are positive as well to other couples that are mixed status. There is a lot of more, you know, work to be done since you equal You was released. I guess
Anita Rao 16:15
You mentioned that the two of you made a big life transition. You got married in 2014 in Canada. You were still living in Indonesia, but then in 2015 2016 there were a lot of anti LGBT tensions bubbling to the surface in Indonesia, and you began to receive numerous threats because of your prominence as activists and advocates and eka, I know that you got advice from a friend, encouraging the two of you to leave Indonesia, tell me about what was going on and when you knew that it was time to go.
Eka Nasution 16:49
When it was time to go, is that the time when I saw on my social media is that they posted my student card ID? So I was like, Okay, this is basically, this is not a safe space for me. I feel that people might notice me as well. And then I want to live with Rainer for the rest of my life, and I do not want to jeopardize his his security as well. Then at the same time too, is that, to be honest, is that I put zero trust of health care Indonesia towards people living with HIV AIDS. So for me, is that this is like an opportunity. This is enough. I want to have like a life. Life here means that I want to have a family. I want to have a sexual health. I want to have health I want to have something that I can share. I want to have an insurance that will cover both of us as a couple, not just as a homosexual couple, but as a human being. So I decided, let's leave.
Anita Rao 17:54
Okay, so you all looked around, sent letters, did numerous interviews, trying to figure out where the two of you could move and live safely, and you eventually connected with a Toronto based refugee aid agency called Rainbow railroad. You were able to safely move to Canada, so long as Rainer switched to a more affordable antiretroviral therapy medication. So Rayner, how did this medication change affect you physically?
Rainer Oktovianus 18:21
The first time I took a treatment, it was like two pills per day, morning and night, and then I think second year, third year, they switched me to a Tripler, which is like one pill a day. And that was the issue when we apply for our visa to Canada, because we got a rejection from the immigration saying that, basically, your your medication for HIV is a burden to the country, and we cannot, like, admit to to Canada. And I was, like, devastated. Like, wow, my positive status, like I never thought it would affect huge areas in my life, like traveling. I love traveling, and like we need to move because our lives are in danger. And so we did our research. We responded a letter saying, Hey, we found an ARV that is more affordable, called AZT. So I switch from a triplet to AZT with the doctor's notes, send it to the immigration office, and they prove it. Unfortunately, since the switch from a triplet to AZT, it was the most horrible time in my life like I'm feeling nauseous, I'm losing hair, like hair just falling out of my head. My skin was dry. I have like, mood swings, and it was not until years later I found out that AZT was no longer used in more developed countries, but I still. Have to use that until we moved to Canada and live for about couple months. And then I went to see a doctor, because I need to refill my own prescription. And then the doctor was, like, shocked, and she asked me, like, what are you doing on AZT, this is bad like, this is the bad stuff. So I explained to her that it's the only way, otherwise we cannot move here. She then switched me back to a tripla, and I'm feeling so, so much better. And yeah, but if we have to remember the moment where we almost lost hope that, oh, man, we cannot move to to can like there are no other countries, because we feel that Canada is home when we got married in Ottawa back in 2014 and we are simply devastated, and we made that sacrifice to to be able move here. And yeah,
Anita Rao 20:58
so there's so much that you all are kind of trying to figure out, you know what to trust, how to shift your approach to taking care of your health while making all of these big life shifts. And over the course of your lifetime and your relationship, there have been so many advances in science that have really changed how you all approach navigating HIV, and there is a medication called prep that people can take to reduce the risk of contracting HIV that HIV negative folks can take. I know eka that you have taken that at some points. Can you tell me about when you have used prep as part of your medical journey,
Eka Nasution 21:41
Yeah, so I understand there's like u equals u concept. And then my thought started to believe that u equals u is valid. I decided to take PrEP. The ultimate objective of PrEP is, of course, first of all, is that I need to protect myself. And then the second thing is that I also need to protect Rainier, you know, I mean, like to get whatever viruses is out there, whatever virus is going to be developed from me. So, yeah, I think prep is also one of the ways to maintain zero discordant relationship like this because, I mean, like relationship means takes two or more than two, whatever it is, but it has to be taken care of, the health of the person involved in the relationships. It needs to be taken care of.
Anita Rao 22:34
So the two of you moved to Canada, you began to build a life together. And we've been talking about some of the kind of technical and logistical aspects of your journey living with HIV as a mixed status couple. But I'd love to kind of bring us up to today and hear about where you each are emotionally at this point in your journey. Rainer, is there a moment or conversation that the two of you have had recently that comes to mind
Rainer Oktovianus 23:04
the feeling of comfortable now we feel that we need to give back to the community that helped us so so much to be where we are right now. And I feel a lot of respect to eka like I know he he made that sacrifice. He trust me so much that he's willing to be by my side even though I'm positive, and I know there aren't a lot of people that have you know mine, like eka, where he needs to process it first. So when he heard u equals u, when he heard there's an ARV to manage or to treat HIV, he doesn't take that information right away. He need to process it. So that's why there's a bit of period where we still use condom during sex, even though the doctor told him, Hey, you can use prep, and then you can, you can take off the condoms if you want to, but it doesn't protect you from STI, like, from sexual transmitted infections, but it can protect you from HIV, and it's like double protection, because I'm undetectable, and he's using prep. So it's like, you know, double double, as we call it here in Canada. But I still feel I need to contribute more to to my community by spreading the awareness of u equals u, which is what I'm doing right now, like sharing the story on how we navigate that mixed status as a couple, how we transition from one country to another country, with my positive status as well. And I think getting the right information resources is important, getting to know the right community. And people are important too, but getting to be with the correct person is also important, because I cannot do this without him. It's Wow. Like, since 2011 I was diagnosed. Now it's 2024 like I never counted the days, and it turns into years. It turns into decades, and I never think of taking that pill as a burden. It's like, you know, like taking your vitamins or supplements daily, basically that take it one pill, forget about it, and I'm healthy.
Anita Rao 25:36
Your love and care for each other is so palpable. And I love knowing you know how you both have shown up for each other at so many moments of this journey. Ekka, I'm curious you know, at this stage, when you all have been together for so long, you've learned so much about HIV through the process of being a mixed status couple, what do you feel like is your role as a non positive partner in addressing stigma like, what would you say to another couple who was kind of in a similar situation, who might be fearful about how to navigate this?
Eka Nasution 26:12
Well first of all is that if there's like a couple I know that is also in a zero, discordant relationship, I'm not gonna say anything until they open up to me. If they open up to me, I'm gonna like share my thoughts, of course, that it will be with permission, and I'm gonna say that it's fine as long as it's undetectable, it will be untransmissible. And then I'm also, to be honest on this podcast, is that I'm a lot advocate to to people who are like discriminating, people with living with HIV. And Rayner could attest to that. And what I would say is that to all the couples out there who is like zero discord relationship, it's fine, as long as the HIV positive person takes his medication and then for double safety, the HIV negative person could take PrEP, because it's not a contract that you need to do until the end of your life. It's basically about sexual health of you as a human being, as a person, because you need to protect yourself, and also you need to protect others. That is my principle, and that's what I've been doing with Rainer.
Anita Rao 27:25
Rainer, I would love to end on any particular lesson that you have learned navigating your mixed status relationship, that you come back to again and again as you navigate new challenges over time.
Rainer Oktovianus 27:40
I think the advancement of you know, technology, as you mentioned before, it helps us as a mixed status relationship. There are new ways. There are new medications, new ARV. So Always talk to your doctor about the steps that you are going to take, but the most important thing is to be diligent and be scheduled when you're taking your pill like never forget to take your pills. Keep your lifestyle healthy. Other than that, you know, have fun in life, because life is short. But what I always do and will always do since I was diagnosed, and even before that, is to always fight the good fight, yeah, and keep the u equals u message going to other people, to other not only like the gay communities, hetero couples, like people that doesn't know their status, they need to check their status, because I know you're afraid. I know you're you know, got 1000 things in your mind, but knowing your status is much better, because you can manage it instead of walking in the dark and maybe spreading it to other people, which is horrible, but, yeah, I'll start with the testing yourself, and then if you, you know, test it positive, get treatment. And you know, we're always like for me and eka, we always open for a discussion, for question. We always like we already help so many people when they ask questions, and we are very open about our sexual life, about our relationship, especially as a mixed couple. So yeah.
Anita Rao 29:34
Well, thank you so much for sharing your love story and your journey with us. Rainer octovianus and eka Nasution, thank you both so much for the conversation.
Eka Nasution 29:45
Thanks Anita,
Rainer Oktovianus 29:47
thank you.
Anita Rao 29:49
We've been talking about living with HIV when you're part of a mixed status couple, but what about when you're single and trying to date? As a few listeners told us that disclosure process is. A challenging part of new relationships.
Bianca Ordoñez 30:05
When it comes to disclosure, I had to be very intentional about who I'm disclosing to. Why am I disclosing to them, when, where and how much? Because not everyone needs to know every detail about my HIV story.
Anonymous 30:21
It's definitely harder in the beginning, but once you talk about how being on medication and being undetectable makes it effectively, like untransmittable, and that you won't have it progress, it makes people a little bit at ease, and then also, just to know that yourself puts you at ease,
Bianca Ordoñez 30:42
a great quote that stuck with me is that the people that care don't matter, and the people that matter don't care. If we choose to disclose our statuses so that people can accept us, then we're doing it for the wrong reasons already, because our acceptance and our self love and worth should not be reliant upon someone else's acceptance of us.
Anita Rao 31:09
You just heard content creator Bianca Ordoñez and an anonymous listener who shared their story with us in our virtual mailbox. SpeakPipe, remember you can always share your story too, as well as any thoughts and feelings about what you've heard on the show, find the link to our virtual mailbox in the notes on this and every episode, we're going to take a quick break, but then some dating and disclosure thoughts from someone who has been living with HIV since birth, be right back
this is embodied. I'm Anita Rao. Learning you have HIV while you're already in a relationship is certainly complicated, but navigating the process of disclosure while you're still in the dating pool comes with its own particular set of challenges.
Diana Koss 31:58
The moment we all look forward to telling our partners that we're HIV positive. Yay. Hey, what's up, everyone? My name is Diana, and I was born with HIV. Welcome to my channel, where my goal is to help those who are positive and to help educate those who are negative. For today, we're talking about something so exciting, and that is how to tell your partner that you have HIV, because this is just so much fun and not anxiety inducing at all.
Anita Rao 32:31
Yeah, that's Diana Koss and a clip from her YouTube channel born positive, where she shares her experiences with dating, friendships and self acceptance as a person who's lived with HIV since birth. Hey, Diana, welcome to embodied.
Diana Koss 32:47
Hi, Anita,
Anita Rao 32:49
so you were born with HIV, but you didn't really become aware of what that meant until you were later in elementary school. Can you tell me about some of your earliest memories of first really understanding what your diagnosis meant?
Diana Koss 33:04
Yeah, sure. So I technically was officially diagnosed when I was two and a half years old, which is way too young of an age to actually understand what that means, and it wasn't really until I was in fifth grade. So I was roughly eight years old when it finally dawned upon me that I have this thing called HIV. Funny enough, I was always going to the HIV doctors, which I thought were just quote, unquote, normal doctors. I'll bite. I was going very often, and every time I went, they would always describe to me this thing called HIV, and how it attacks the body, and how it replicates itself, and how I have it. And it didn't really click for me. I was quite slow, but finally I understood, oh, I have that virus. It's actually in my body, and the reason I'm taking medication is so it doesn't replicate.
Anita Rao 33:58
So each year in the US, there are only about 200 babies born with HIV since, as we've been talking about, when HIV positive folks are on treatment, they can safely have sex. They can also safely have kids without passing along the virus if they're undetectable in their pregnancy. But your mom was not aware of her HIV status when she was pregnant with you. So how did she talk about that with you when you were growing up? How much of that did you understand?
Diana Koss 34:27
Yeah, actually, funny enough. The HIV test was offered to my mom, but she refused to take it or denied it, just because she wasn't gay and she wasn't a drug user. Keep in mind, this was the mentality back in the 90s. Also, she came from a Eastern European country which was a little more conservative, so I don't blame her. And it wasn't until she was pregnant with my younger sister where she actually had to take the test for the green card application, and that came back positive. So. So obviously that's when I found out, or it was a struggle to know, that I had to live with HIV while my sister didn't.
Anita Rao 35:13
Yeah, so you were in this kind of mixed status family. You and your mom were both HIV positive. Your sister and your father were HIV negative. What was that like for you and your sister to navigate in your relationship?
Diana Koss 35:27
Oh, I mean, it's was really difficult. I think alone without HIV, sisters can get into fights growing up as teenagers, especially. But because HIV was in the picture, there was a lot of frustration and anger that I probably took out on her, just because I felt like it was just so unfair that I was the one who had to deal with it and she didn't have to deal with it at all. And on top of that, I think it was just so predominant because I had a severe side effect from the medication called lipodystrophy, so you can see it physically on my body, whereas my sister didn't have that and I was just super jealous, envious, whatever you want to call it.
Anita Rao 36:13
So we spoke earlier about this concept of u equals u, which means that if you have an undetectable viral load, you can't sexually transmit HIV. How old were you when you first learned about you, equals you? And what do you remember learning about it?
Diana Koss 36:29
Yeah, it's actually funny to hear how Rainer and Eka talked about it, because it seemed like they were hesitant about you, equals you and everything. And can we trust it, etc. Whereas, keep in mind, growing up, I had the same HIV pediatric doctors my whole life, until I graduated to the adult HIV doctor, and they were aware of these studies that came out before the partner study in 2014 like it was already quite well known in the scientific world that, hey, it looks like when people reach this undetectable limit, we don't see transmission. And although it wasn't officially published, it was just some kind of known fact. So I think my doctors always made me feel normal for who I was. So that's how I kind of treated my HIV status, and I knew I couldn't transmit it even before u equals u officially came out.
Anita Rao 37:28
So how did that shape how you approached disclosure? Did you talk with friends growing up about having HIV? How did you think about who and how to tell Yeah.
Diana Koss 37:39
I mean, definitely it rubbed off on me how my mom approached HIV, and her number one goal was to make sure no one would find out, because this could have led to potential bullying. So in my head, it's just so fixed that I should keep this thing as private as possible. It's our secret. There was only one teacher who knew at my school, and that's because she was just a friend of my doctor. So it was just drilled so in my head I should never tell anyone. And it was a really big moment for me to decide that I want to disclose my status to a friend of mine in middle school, and that worked out really well, even though we weren't friends later on, and then I disclosed to other friends in my high school group, and when that dissolved, they disclosed my status. Which I didn't think someone would do that, but it happens we're in high school. People are immature at that time, but I lost a lot of trust in being able to tell my friends that like I had closer connections with probably later in college and everything, because I was just so scared of getting hurt again.
Anita Rao 38:46
Yeah, that fear of rejection and fear of hurt, I'm sure, is so intense. How did you kind of learn to think about the fears that come up around rejection and get to a place where you felt like you could share again?
Diana Koss 39:01
Yeah that has been quite the journey. I'm not gonna lie. I think I just adapted this mindset that what is the worst that's gonna happen? Okay? They reject me. So what am I okay if this person's not in my life anymore? Yes, I have other people who really care and accept me, and I will move on and I'll be fine. And I think part of growing up for anyone is diving into the unknown, and I didn't know what the outcome would be, but the more I tried, the realized the world is not as scary as I painted it in my head, specifically with a rejection. I was so convinced myself, internally, like this kind of internalized stigma, that all my partners would reject me, and little did I know that when I put disclosure into practice, it was quite the opposite. I was actually quite surprised that more people have accepted me. Then rejected me, and that's when I realized my perception, my head, was definitely not matching my reality.
Anita Rao 40:06
I want to talk about disclosure and dating. I know online dating in particular has opened up lots of new conversations. There are some HIV positive dating sites. There are other sites that give you the option to kind of disclose as part of your profile that's available to everyone. What kind of approach have you taken to disclosure around online dating?
Diana Koss 40:28
I definitely don't include that I have HIV. I think it's definitely a little bit different between the heterosexual and homosexual communities, just because I think there is more education in the homosexual communities, because it is more prevalent just based on how it's transmitted and whatnot. And to me, someone did ask me about this, and they were worried that, Oh, I feel like, if I don't tell someone on the first date, I feel like I'm catfishing them. And I'm like, honestly, so many people have skeletons in the closet. This is like the least of my worries. For me, it's most important that the person gets to learn me or know me as a person first and make judgments on who I am before putting me in a shoebox of who I am as an HIV positive person.
Anita Rao 41:17
You mentioned the context of talking to heterosexual men and kind of thinking about what information they might have or what understanding they might have about HIV, how does thinking about that knowledge shape how and what you share?
Diana Koss 41:36
I think empathy and really putting yourself in the partners or another person's shoes, is such a vital concept. So I have to understand that my partners, or this pool of partners I have, they have never had any contact with HIV whatsoever, other than in school. So what they might know is that someone can die from it. They don't want to contract it and whatnot. So it's like a playing ground for me in the sense that I decide how I want to present HIV, and I'm already going into a disclosure aware that my partner is not so educated on it, and I learned that the way I present it is how they receive it. So if I come in very scared and self conscious about my own status, that's how they're going to take it, and they'll absorb that fear from Me, whereas if I'm confident and I say, look, I was born with it, I'm undetectable, I cannot transmit it to you, that's how they'll take it, and they'll trust me. And I think the weirdest thing for me is that there are two pieces of information my partners have heard in the past, and that is, first off, HIV equals you, and Second off, that I actually am undetectable. No partner has questioned me on the spot. So I'm really amazed at my partners for trusting me so blindly.
Anita Rao 43:03
Is there something that someone has said to you in this disclosure conversation that's made you feel particularly seen or particularly howled emotionally?
Diana Koss 43:14
Yeah, I think it was with my first serious boyfriend. He was an emotional one. He was not very much the rational, practical one. You have to also read your partner in that sense. And he asked me two questions, and the first one was, what happens with me? Am I going to live long enough? And the second one was, will I be able to have children? And clearly this just showed that he was ready to have a long term future with me. Otherwise, partners can be more practical like, Okay, I can't get it from you, and that's all they need to hear. And then we see what happens with that.
Anita Rao 43:51
So taking daily medication and keeping an undetectable viral load means that you can have a kid without worrying about transmitting HIV to them during pregnancy at this stage. How do you imagine talking with your kid about HIV if you decide to have a family?
Diana Koss 44:08
Yeah, so I definitely can't wait to have kids. I definitely want to have a nice family and whatnot. That is interesting. I think I never actually thought about how I would want to tell my kids, because they technically will not have HIV. I think it would just be something that would come up one day when they're mature enough to understand I have something, probably when they're teenagers. Because if they're little kids, I'm sure they can't keep a secret that well, so we have to wait it out a little bit.
Anita Rao 44:38
You mentioned earlier that you have had experienced some side effects from taking the antiretroviral therapy medication. I'm curious kind of where you are in your relationship with your own physical body at this point, and how that affects how you show up in intimate relationships.
Diana Koss 44:59
Definitely. Finally, it's been a long, hard process and journey of self acceptance and self love, which everyone definitely needs to go through before they can love and accept another human being. And honestly, I felt so bad about my own body and myself, the fact that I was I had HIV, and I never understood why anyone would ever want to be with me if they have a choice to be with someone else who doesn't have HIV. And the way they looked at me and cared for me and accepted me, I was just wishing so badly I could see myself in their own eyes, because I was so blind to what they were seeing. And it definitely took lots of experience, to say the least, to finally realize that I am worthy enough, and I finally got to see myself the way my partners were seeing, and it plays such a huge role in the sense HIV plays no role whatsoever for me, like I just have normal dating stories, like anyone else, and crazy ones, good ones, bad ones, sad ones. And I think that's kind of the beauty of it, that I'm able to experience all of this.
Anita Rao 46:15
You have shared so much wisdom in your YouTube channel. Born positive about your experience living with HIV, and I was looking through the comments and just seeing how many people were so grateful to hear you share your story, and who felt like they were able to find community through listening to your experience and hearing how you navigate dating and relationships. What do you hope that people will kind of take away from your story about building a sero discordant relationship in this era where we have the kind of HIV treatment that we have,
Diana Koss 46:56
I think the number one thing I want to tell anyone is I just want you to feel empowered. And if you're HIV positive, please don't forget all the wonderful things that you are, that you were before the diagnosis. Because I don't want anyone to feel like HIV has to define who they are. I want them to be the ones who get to define what it means to be living with HIV. Because, long story short, if I put the focus on who I am as a person, the friend, the partner, what not, then no one even cares about me being HIV positive anymore.
Anita Rao 47:41
Embodied is a production of North Carolina Public Radio-WUNC, a listener-supported station. If you want to lend your support to this podcast, consider a contribution at wunc.org now. Special thanks to Bianca Ordonez for contributing to this week's show. We appreciate you. This episode is produced by Audrey Smith and edited by Amanda Magnus. Kaia Finlay also produces for our show. Nina Scott is our intern and Jenni Lawson is our technical director. Quilla wrote our theme music. If you'd like to support our podcast, the best way to do so is by sharing about us with your community. Text your favorite episode to a friend, share a note about us on social media and tag us, or write a review on iTunes or Spotify and let us know why you listen. Thank you so much for your support. Until next time, I'm Anita Rao taking on the taboo with you.