The Cure Chronicles: HIV with Diana Koss.
Diana is a YouTuber who uses her platform to share her story and build awareness about HIV. Her primary goal is to help those who are positive and educate those who are negative. Diana hosts a series called Born Positive which chronicles her journey and experiences after being born with HIV.
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Jeff Galvin: Diana, thank you so much for joining us on The Cure Chronicles today. You know, I learned a lot about you before this interview by watching some of your videos, and they are fantastic. There are gems in there, and your whole theme of educating people that are HIV negative to understand HIV that also brings people together, that's an important mission.
Born Positive, that really sums it up, doesn't it? Okay, you're a positive person, but you were also born HIV positive which is very unusual. I haven't interviewed anybody like that so far, and I'm really interested to know, how is your experience finding out about your difference?
Diana Koss: Sure. I want to actually even take it a step backwards and say kind of the whole story behind it with my younger sister as well. So, I was born with HIV, but my mom didn't know she had HIV at the time. That's why I had it. She only found out when she was pregnant with my younger sister two and a half years later. Hence why I was diagnosed with HIV at two and a half years old. My sister is negative because they put her on medication and everything, so it's fine, and my father is also negative.
But then when did I actually find out I had HIV? Because how are you supposed to tell a kid they have HIV, and another big question is how are you supposed to cope with the fact that you're HIV positive? Like, I didn't know what it meant to be HIV positive, and I just knew it was something I shouldn't tell anyone.
But the moment it really clicked for me that I was HIV positive was in fifth grade when I was eight years old or so. And I knew I was always going to this special doctor, and they would always explain to me each and every time, like every three months, like how the HIV virus works and attacks the body, you know, with illustrations and drawings and everything. And I'd be like, okay, I get this. We've been over this a million times. Like, what's new here?
And then one day, it kind of clicked in me that I have that virus inside my body because they were always explaining the importance of the medication I was taking because it was stopping the virus from replicating itself. So it was kind of like a game they played with me, which was very clever and…
Jeff Galvin: Because it was necessary?
Diana Koss: I think so because it was, it's a psychology trick, I think, because they always showed how my CD4 cells were super high and my HIV cells were undetectable. So they were like, "You're doing so good, like you're always keeping it up, and it's because you're taking your medication." So for me, I felt like I was always doing something right.
Jeff Galvin: It was a positive feedback loop, I'd say.
Diana Koss: Exactly, exactly. And I would suggest that's how you tell a kid they're HIV positive. It, um, it was good. Um, but in terms of feeling different, I also struggled with a major side effect from the medication at the time, if it's not the case anymore, but it's called lipodystrophy, we'll probably get into it a little bit later, so I'll explain it then, but essentially physically, I also look different and anytime anyone made a comment on that, it just reminded me that I am different because I do have something called HIV and no one else has it and my sister didn't even have it, which just felt completely unfair to me at the time. And yeah, that's hard enough.
Jeff Galvin: It's hard enough having sisters and brothers and then to have, yeah, it was actually distinctly different, like yeah, that just feels like, like why was she the lucky one, right, who doesn't have to deal with this?
Interesting, yeah, but okay, so somewhere around, you said eight or eight years old, you started to realize, okay, this is something really different and then somebody explained to you that yes, this is something that is rare and it will affect you for a while, hopefully not for the rest of your life, because of course, we're very hopeful that we can create a cure for HIV. So, and I think that a cure is inevitable, whether we're gonna work to get there or not, I can tell from what we're seeing, HIV will be cured, no question in my mind. I'm not sure exactly when and I'm not positive, you know, I can't be absolutely positive that we'll be the ones to do it, but I think we got a good shot on goal here, so that I think a lot of people think, "Oh, HIV is forever." I don't even think it's really forever.
Jeff Galvin: And the other thing is that it's really changed, right? Like when you were really young and the drugs that you were taking were harsh and you said you got a side effect from them, right? And now the drugs have much less side effects, I guess, is that the case? I mean now the drugs that you're on, do you notice that they're a little less problematic in terms of you know how they affect your health?
Diana Koss: Well, that's the funny thing, because while I've been taking these pills my whole life, I can't tell you if I have side effects or not. Like what if I have headaches everyday, but I don't know what it feels like not to have them because I've always had them, you know what I mean, like what is normal then for me? Like where's my…
Jeff Galvin: That's so funny, you're laughing and smiling about it, right? I mean, this is part of your positive attitude, right?
Diana Koss: Yeah.
Jeff Galvin: Like, well, here's my set point, and I'm not complaining at the set point, so am I above or below where I would have been without the drugs? I don't know, but here I am, right? Here everything's pretty cool.
But, you didn't see any difference like you, because you've been taking these drugs for a while, like you're in your 20s now, is that right?
Diana Koss: I'm 27, yes.
Jeff Galvin: 27, okay.
Diana Koss: I know, I know, I'm getting there.
Jeff Galvin: So, I imagine you've been taking drugs since you were two and a half when they figured out you had HIV, right? And you know, 25 years ago, the drugs were nothing like they are today. They had really toxic side effects in some cases.
Diana Koss: Oh yeah, like lipodystrophy for example, this only affected a few and I was just one of the “lucky” few to get it. But I do want to say it's just crazy because like you said in the 90s, the main purpose of these drugs was just to keep people alive. Whatever the side effects were, just keep people alive. So actually, a lot of people chose not to take the medication because of the side effects. They would cause something called HIV face, like the sunken in cheeks, which I do think I have, but it might look more like I chiseled. I don't know but…
Jeff Galvin: But yeah. So tell us, since we were on the subject of uh, lipodystrophy, tell us about that. What was that side effect? What is that of, how does that affect your life?
Diana Koss: It's called HIV-associated lipodystrophy which came... not I repeat, we're not really sure if it's from HIV itself or more so the medication, but what happens here is that the person can't carry as much fat on their arms and legs and maybe it covers more on their back and stomach and more so visceral fat, so this is like the fat that lines your organs, which can be much more detrimental to your health and dangerous, because we want to limit that.
However, I would say I'm not on the unhealthy side of this because I have a very healthy lifestyle and everything. So in terms of like I don't know, cholesterol, what is it called? Triglycerides or something, I'm very healthy in that regard.
But if I were to gain more fat, it would look disproportionate and I would have a very muscular look, which I always took it as very harsh and it's hard to look at old photos of myself. But people would come up to me and comment on my body like, "What do you do to stay in shape?" and I did get good looking guys just for that, but this is how powerful the mind is... I didn't believe that growing up. It was just a constant reminder that I was different. Different enough that people felt the audacity to come up to me to tell me how different I am and comment on my physical appearance.
Like, I knew that was always the first thing people would see and I just didn't want that. I wanted to walk into a party and feel normal. Like, don't come up to me and say something.
Jeff Galvin: I think everybody, especially when you're young, you just want to fit in, right? Like people don't want to be separated out in artificial ways. They want an opportunity to connect without thinking about those differences.
That's really interesting. So you just looked like you worked out, so you were... you look like a particularly in-shape muscular young lady. And the funny thing was, even though people were commenting on it and you were feeling like, "Oh, I don't really want people paying attention," in some ways, they were looking at it like, "Why can't I be in such great shape like her?"
Diana Koss: Yeah, I mean, of course, it's like, usually like no guy is gonna come up to you and be like, "Yo, you're ugly, your body's ugly." You know, like that would be weird. And even people would be like, "Oh, let me open up an Instagram profile for you," and I was like, "Oh, please, no. Like, I just want to live in peace." But I changed my perception with it now and I take it as a compliment and I'm like, "Like yeah, I do work out, and yeah, this is my body now." Good times.
Jeff Galvin: It's infinite, uh, shapes and sizes to humankind. Right, that's all good. So, all right, well, I wonder whether we totally got the sort of transition from getting lessons as a young lady about how HIV works in the body and T-cell biology and stuff like that, which is just amazing.
I bet that kind of activated your interest in science and logic and systems and stuff like that. All of that thinking probably led to developing the parts of your brain that make you such a great natural psychologist too, right? It sort of forces and influences and complex systems that are yielding a resolve. Right, nothing more complex than the five inches from here to here, right?
So, but was there a moment where you remember sitting down with your parents and them going, "Yeah, here's the situation, here's the difference”? Or was it something that just kind of, like, slowly, you just awakened to?
Diana Koss: It's like this slow gradual thing, like maybe it was some denial or like I didn't want to confront it or I'd be like, no, come on, I don't have it. Like, what? I would say I really lived two lives, like I was Hannah Montana, you know, uh, they're like Diana with the normal life like I had friends, I fit in really well, you know, sports, good at school and it was fine. And then I was like this other Diana that was reminded that I'm HIV positive, and I would push that in the closet and I would only open up every time I'd go to the HIV doctors, where I swear to God, I was like Pavlov’s dogs, you know, where their condition that every time I went to the doctors, I would just enter the children's hospital and be ready to cry. It was so cathartic going there because it was just a reminder every three months that like I do have HIV.
Jeff Galvin: You were crying about it from the very start? So like at the earliest times or did you…
Diana Koss: When I realized it. To me, to be quite honest, I don't know if HIV itself really bothered me in terms of like the aspect of telling partners in the future. It was really the lipodystrophy that was like why me? Like I really, I look different. Usually HIV doesn't have a face and you can't tell someone has HIV from lipodystrophy. I mean, now we see diabetes can cause it too. It's like a metabolic disorder. But it was just if I didn't have the lipodystrophy, I don't think I would have suffered as much psychologically, if I'm honest.
Jeff Galvin: Yeah, well I always think back to all of the challenges and negative things that happen in my life and how they shaped my personality, and I see a lot of positive things that came out of it, and I wonder whether your keen sensitivity to other people's psychology might have been a beneficial consequence of the pressure that those challenges put on your life, right?
I mean, tell me, like, you're born positive, it can be taken so many different ways. And, why did you know that that's a great name for your video channel? And the mission of supporting people who are HIV positive and educating people that are HIV negative, I think is a really good mission, because it's all about bringing people together. It's all about sort of throwing away our fears. This applies to any different groups. Right? I mean, think about all the prejudices in the world that just don't need to be there, right? That are just inefficiencies that are created because of a knee-jerk reaction to something that we don't understand, right?
And so HIV is one of these really weird ones because sometimes you can hide it, you know? There are people out there that are HIV positive and you just will never ever know, and they will never talk about it. And you know, but they're not, it doesn't matter. I mean, people that are educated to HIV will realize like, "Oh, if they're on their meds, they're no different to you than anybody else in the world." I mean, even if you had an intimate relationship with them, it wouldn't make any difference.
You mentioned that your sister is negative and your dad's name negative, right? And you wouldn't have a sister if your mom and your dad weren't intimate, so there you go, right? I mean, that's the point. Well-controlled HIV, you know, completely obliterates the issues of people being together. Like, you can even get pregnant and have a kid that won't have HIV. Like, that's not even a consideration in your relationship.
Diana Koss: Like, right, I can tell you, I've accepted the status that I'm not even worried if HIV will be a deterrent from meeting someone and like having kids. Like, I'm so looking forward to. What I'm worried about is like finding that person I like enough to make sure I have a good life with them. Like, I don't think, oh my gosh, I'm gonna take the first person that accepted me because, for anyone watching it, there you'll be surprised by how many people actually really do not care about your HIV status. Like, I was, it was more in my head. I would be like, oh my gosh, I'm so terrified to tell them. Like, what do I say? I have to give this huge monologue, like, my whole story. And they didn't care, you know? It's just like, oh, I appreciate you telling me and I trust you that there's “U equals U”, but none of them knew, and I just wanted to touch on this real quick if I may. I think what's interesting is I always wanted to help those who are positive, you know, maneuver this HIV-negative stigmatized society, but I kind of realized the problem isn't HIV-positive people not being empowered enough. It's the fact that we live in this stigmatized society, and to fix that, you need to educate HIV-negative people because those are the ones that don't know. And in turn, that will help HIV-positive people feel more confident, so it's kind of, you know, this circle.
And, but I also have to be a positive, independent HIV-positive person to show HIV negative people it's not a big deal, and I think that's really admirable and noble of my partners to take the risk of sleeping with someone who's HIV positive. I think it shows a lot on their character too.
Jeff Galvin: Yeah, well, it's a level of trust which is kind of a critical element of a great relationship anyway, right? You know, and this is almost kind of like a test of it or a testament to it to that trust, right?
I think you know what you're talking about. I've seen this pattern before, right? When you think about other things that were in the closet, like LGBTQ, I remember from watching the movie Milk, about Harvey Milk, and the way that he led sort of people coming out of the closet and that this acclimated society to the fact that LGBTQ was everywhere and it actually started the healing process.
People realize that you know they had a sister or brother that was that way and they were okay people. I don't hate them and they're not trying to recruit me like everything of that, all the lies that were generated from the fears, the irrational fears of LGBTQ were literally getting in the way of people just enjoying normal relations and especially LGBTQ from having normal lives.
So what you're saying is kind of, "Oh it's the same thing for HIV." The more people that actually are open about their status and we realize like they're all around us, we've been living with these people forever and we're not in danger and they're no different than us, they're the people that we love right, they're the people that we have befriended, that we've connected to, that little teeny thing, which is really a little teeny thing. You know, all the stigma and all the fear could melt away.
Yeah, I think it is a very noble mission to even encourage other people to do that, although you know one thing that I've seen in these videos that I've done with other people is that it's a personal decision. You know it's really great when you can provide like an example of it worked out and you can really talk about that experience and you can give advice on how to make a transition and I've seen that in a lot of the videos, but I've noticed that almost everybody that I talked to say says it's still your personal choice, how you're going to handle it.
Jeff Galvin: So you chose to be open about it. When did you start being open about it with your friends?
Diana Koss: Oh, it started in high school, but that backfired completely, so I lost my trust in telling my friends about my HIV status, which was unfortunate because I think I really needed that support from my friends during college, and then I opened up again when I moved to Germany.
I think going to Germany was a really great decision for me in terms of HIV as well, and this is what I wanted to say. Honestly, I didn't lose any friendships. If anything, it made our bond even stronger, because there's no reason to tell anyone you're HIV positive if you're friends, because you're not trying to sleep with them. So if you tell them, it's really this like "I feel so comfortable around you, and I just really want to share this with you", and I think they take it as like a leap of faith or like it's really kind and they appreciate that you share that with them.
Even when I came out being HIV positive, I have such a supportive work environment, and I did get a lot of, like, "Wow this is very brave of you", and I was like, "What does that mean exactly?"
Yeah, normal for me, but yeah, and the perspective of an HIV-negative society, that is pretty crazy, to be like, "Hey guys, I'm HIV-positive."
Jeff Galvin: I think that the thing that made it so interesting - HIV made it a little bit different than LGBTQ in terms of how people were able to come out of the closet and be LGBTQ, right? - was that in the early days HIV was a death sentence, right? And people haven't forgotten that, like HIV equals death, and people haven’t moved past that in their heads in a lot of cases, right?
And yet it hasn’t equaled death since the mid-90s. Like since the mid-90s, anybody with HIV could have a normal length life, and since the 2000s, my understanding again, I ask people about the side effects and I love the fact that almost everybody goes like, "Yeah, it doesn't affect my life," right?
And that's really important because now quality of life is one of the things that science is supporting for those people, and so then what is the difference, right? And then the difference is that now you have in some ways a filter…
Diana Koss: I'm just gonna say that that's why maybe it's nice being HIV-positive, because you have a filter for the genuine people, but that’s not what I wanted to hear when I was a teenager. I wanted the whole playground, you know, I wanted all my choices, I didn't want… but now it's like now I can really weed out people who wouldn't be there for me, and they need to see me for me and not for my HIV status.
Jeff Galvin: Yeah, as I've gotten older, I've found that I'm much more, just, I just put myself out there, right? When you're younger, you sort of act in a way that you think will bring you the things that you need in life, and frequently, like in the high school, right, why do you want everybody on the playground to like you, it's a type of power, right? You know, you feel powerless in the world and you're gripping for that power.
But in reality, there's too many people on Earth, and you've heard it in high school like, "Oh, if you die and you have like four good friends, you know, then you've done well in life," right? And you know, that's the reality, no, we have to tolerate everybody, we should all be nice to one another, we should all be civil to one another, but I don't care whether somebody likes me or not, it's just like if we got some business to do together, let's do it in a collegial way, right? Let's form teams where our agendas overlap and and do stuff or whatever, but it's, uh, it's so funny but for me it's had to be getting super old that has made me all crotchety and unwilling to put on facades to be present all the time and sometimes I see people that are in their 30s and I feel sorry for them, you know, so you're 27 and you're like, you've accomplished more in terms of your psychology than I've done in 60 years, right?
So many people that are in their 30s and they're all still image-conscious, you know, and I'm like, "What do you get out of it? You know, why are you such a tool of the media? Why are you so...?"
Diana Koss: There’s no more individualism any more. I think there's this good quote where it's like time does not age you, but pain ages you. So, I think because of the pain and the challenges, you will overcome it and you become so much stronger on the other side, and I've had enough character development at this point, like I don't want too much more pain in my life, but I'm fine now, thank you the universe.
It's interesting with HIV because like, I don't wish it for anyone, of course, like, I also really always wanted to wish HIV away. I hated having it. At the same time, I don't know who I would be without it today, and it made my life so much more colorful in ways I couldn't have ever imagined, as weird as that sounds. I think I would choose it again to have it, honestly, because I've lived through the pain and I can now reflect back on those years and be like I needed that to get to where I am today, and who knows who I'd be today, maybe I would just be a cut out of society trying to fit in on like social media and everything, but I feel me, you know, and I think that's a little bit more beautiful and I hope people can take this hardship if they're diagnosed with HIV and spin it around to be like I am different but I'm gonna let it shape me and it's not gonna define me and I decide what it means to be HIV positive.
Jeff Galvin: As I listen to you, I just think back to stuff in my life that was so painful, but I have looked at many of those things that same way that it grew me. You said pain ages you and yeah, I think we got to be careful about understanding age. I think of it as it matures you, makes you smarter, makes you stronger, you know, all these makes you more creative, like all of that stuff does come out of these challenges sometimes, like sometimes I meet people and their life was just too easy and I'm like, you know, they're just there right, like there's nothing to grip onto you know and uh, and bless them…
Diana Koss: I have a funny story for you, actually. I was just at Oktoberfest here in Munich, right in Germany, and I made a grown man tear up because I told him about my HIV story and a breakup story I had recently and he was just like "I've never been through so much pain in my life and like wow" and I'm like telling him "You're so lucky you haven't, take it as a blessing, but I just I have to cope with this somehow and get out of it" and he said he can see the pain in my eyes but also the, how to say, the optimism for the future if that makes sense.
Jeff Galvin: That makes perfect sense. Of course, you're recounting a painful experience that's related to your status, but it doesn't sum up your life, so yeah the born positive aspect of your personality is still shining through at the same time when you recount something that made an impression on you and that's, you know, the aging and maturing process and what's remarkable to me is that this guy had empathy, so that's a signal in my mind that his life hasn't been totally easy.
Because the people I know whose lives have been totally easy, they lack empathy because they haven't skinned their knees, so they don't know what it feels like for a little kid to skin their knee. They don't know why that kid's crying and they don't know why adults are feeling pain. We do have to have some common experiences that sort of set in our mind, you know, an idea of what the other person might be feeling at that moment. And then, if we actually have a willingness to think about it and if we're smart about it, we can actually get inside that person's head and truly empathize with them, truly feel for them.
So that's, I think, it's kind of wonderful that you know, the guy was able to feel your story, right? It's like a good movie, right?
Diana Koss: If your life’s a movie and you’re not the protagonist, what are you doing, right? But no, with the empathy, I, how to phrase it, I think he said something like, "I didn't go through this much pain, but I need to listen to these stories to understand better what's happening in the world." And I told him, "That's the best thing you can do. I don't care if you didn't go through this amount of pain. Just listen to my story and share it." And he was really on board with that and I liked that kind of attitude.
Jeff Galvin: So he's on a video somewhere else telling the other side of this story. [Laughter]
Diana Koss: There’s always two sides to a story.
Jeff Galvin: I think, are really, really good, right? But I do not believe that his life was totally easy.
Diana Koss: I don't think so either. I think he was being humble.
Jeff Galvin: Because I think that a lot of people who have empathy, frequently, you know, empathy has two aspects to it. One is an appreciation for somebody else's pain and then an interest in it as well, which means that you have to look at it as being relatively important, which means that you have to minimize your own experience for a moment in order to learn about a new one, right?
And so, my guess would be that if he really told you his life story, you might have said something like, "Wow, that was quite a challenge, oh, that must have been quite painful, you know", whatever, and he would minimize it because for him, that was just life. And then your experience was unique because he never had that one and he could be dealing it with you and imagining himself having to go through that because he could piece it together from other experiences he had.
And so I love empathy. Like to me, empathy is one of the best human qualities, right?
Diana Koss: You know, it's funny, I just filmed a video on empathy and how it helps us as HIV-positive people because you put yourself in the negative person's shoes and how would they want you to tell them you're HIV positive, which if you're diagnosed with HIV, is such a pro for you because you knew what it was like to be negative, so you can actually, like, what would you say for that person to be okay with the fact that you're HIV-positive, whereas someone who was born with it, I had to learn empathy to be like, "How do HIV-negative people see HIV-positive people?" I had to talk to friends or something.
And vice versa, it's really important for the HIV-negative person to have empathy towards us and what we went through. It's really touching to have serious partners who really appreciate what I went through more than I do, because to me, it's just normal. If that makes sense.
Jeff Galvin: Right.
Diana Koss: They were like, "Wow, this is really incredible what you went through." I'm like, "It's just my life, dude. I don't know what else, yeah."
Jeff Galvin: Just like that guy you met at the beer hall at Oktoberfest. It's my life, man, but yours, oh my gosh, I can't believe this story that I'm hearing here, right? It's like a great movie where I got to look into somebody else's life and feel it like that. That's a type of movie that I just love, right? To live somebody else's life and to feel their life because the movie is that great. And you come away, you know, without having to have gone through it yourself, but with some understanding, some appreciation, some growth from that work of art, right? Yeah, and your story was a similar work of art.
I think everything to humans is about storytelling. It's always some sort of arc in our head from one place to another. Even as you're thinking about what an HIV-negative person wants to hear, right? Or you're saying, "Let me get in their shoes. Let me figure out where they are, right?" But they don't understand. How can I lay down the breadcrumbs to where they have a common understanding with the concept that's in my head, right?
And that we can share a perspective on something that isn't part of them but is part of me. Yet, you know, we look at it in almost the exact same angle right because of that storytelling, right? Yes, it would be really interesting too. Too bad you didn't film that discussion. You know, it would be really interesting to see what connected there. Because sometimes you're sitting back and you're watching people talk to one another, and you realize when it clicks for the other person. And you can see the elements in the...
Diana Koss: Well, my friends took videos and pictures. I'll send them to you.
Jeff Galvin: Oh, really? Oh, I would love to see that. Oh my gosh, yeah. Well, look, I'm so interested in connection in general. I know this video series about HIV, but HIV describes the narrowest slice of everybody that I talk to, which is just so amazing.
Like, if there was nothing else that people could take from these videos, it's that I'm just talking to really interesting people within fascinating stories and different perspectives and wisdom that they've collected through their life. And HIV has become just one tiny little aspect of them, right?
Which is really encouraging for everybody else. Because if you're newly diagnosed with HIV, I could imagine the shock value, right? I remember when I took my first HIV test, like the anxiety. Like I was a very low-risk person, but for some reason, you know, I was just like, I'd heard so much about HIV, and I just was worried, and I thought, "I gotta take a test," and it came back negative. But I remember I didn't even want to hear when the doctor said, "Oh, I got your test result." I was like, "I’m not sure I really want to know."
Diana Koss: You’re bracing yourself for impact. "Please don't tell me it's positive."
Jeff Galvin: Yeah, yeah, or even thinking in my head like, even if I'm HIV positive, I don't want to know about it.
Diana Koss: Yeah, that’s the thing, ignorance is bliss. The same thing happened with COVID, actually. People who would rather not test themselves knowing they probably have COVID, but they'd rather just not know. And the problem with this is, is when you're scared to get tested because you probably have HIV, you're actually putting yourself more in danger and others. Because when you know your status, you’re on treatment and you're safe then and…
Jeff Galvin: You're safe and the people around you are safe.
Diana Koss: Exactly.
Jeff Galvin: HIV treatments are way more reliable than COVID treatment even.
Diana Koss: Exactly.
Jeff Galvin: You’ve 100% protected yourself from the consequences, you have 100% protected others around you from the consequences. But it does mean that you have to overcome that fear.
Diana Koss: You know, because of this hardship I went through, I developed my personality, my intellect, my humor. I think I'm funny, and now I'm not dragged down by HIV anymore. So it's like, it's the same thing where someone wasn't attractive or something, so they became funny, but now they're attractive and they're like a bombshell, you know, and it's just like, dang, watch out, the person has everything.
Jeff Galvin: Look at it, you’re right. You’re saying you had this pain and it developed all these really interesting things about you…
Diana Koss: Because you want to overcompensate for that.
Jeff Galvin: Maybe you're just pretty darn special.
Diana Koss: And that’s what I always want to tell people. I do truly remember that back in the day, I was defined by HIV, like that who I was, but I'm not HIV. I'm Diana first and then I just happen to have HIV and that's what I wish for other HIV positive people to remember, like don't forget all the amazing things or aspects that you bring to the table because that's who you are. You just happen to have HIV on the side. You aren't HIV, it's just on the side, and don't let HIV be the spotlight then, because if you do allow that, then all your partners will see that too, if that's how you present it and put attention on it, then they're also just going to be like, oh yeah, you're just HIV, but you're not any of this other amazing things that you can offer.
Jeff Galvin: That's a good point, like what we put out is a lot of what we get back, right? You know, like smiling at strangers frequently, you get a smile back.
Diana Koss: And I think I read this book, I think it was Happiness by Design, and the main takeaway point from it is wherever you put your attention is where your happiness comes from. And the more attention, what I got away from that, if I compare it to HIV, is the more attention I put on HIV, the more attention I allowed others to put on HIV. But if I didn't put any attention on HIV, then they didn't care about it at all.
So that's why I think it's so important when you present the disclosure to be like, it's not a big deal. I'm just sharing it with you. There's “U equals U”, so you know, but it's okay. But if you express it as, like, this is the end of the world and you're dying, and like, "Oh, I feel horrible that I have to tell you," like the person's gonna start freaking out, like sweating in the back of the chair like, "Oh my God, what are you about to tell me? Like, what's going on?" And then they suddenly get into this freak-out mindset, but if you just call them, tell them, "Hey, by the way, I have this," then that's how they're gonna perceive it as well.
Jeff Galvin: Yeah, that's interesting. It's another aspect of empathy, is that we read other people's feelings, we literally feel them. Somehow you telegraph what you're feeling inside, and part of empathy is we start to feel it. Like, I notice, like, if I'm around people that are anxious, I get anxious.
Diana Koss: Yeah, 100%.
Jeff Galvin: And it's like, you know, this is another great aspect of humankind, but every positive quality is a two-edged sword, right? So it can go either way. And yeah, what you're saying is, you know, that what you were talking about earlier is, I've always seen that as well, is that whatever you focus on, you bring into your life, right?
Diana Koss: Exactly.
Jeff Galvin: And the placebo effect of everything. If you have a positive belief, we've seen in clinical trials that people who think they got the drug get like a 35% response from a sugar pill, from the placebo, just because they believe in their future now.
Diana Koss: Essential oils do the same thing too, right?
Jeff Galvin: Yeah, whatever you believe in, you'll make true in your life. Even negative stuff, look at all the turmoil and chaos in the world right now because people are choosing to believe in stuff that's just non-scientific, not backed up by evidence, stuff like that, and they are becoming negative aspects of society while also bringing a lot of negative stuff on themselves. And for why? No reason, just that they just got obsessed with some point of view or whatever. Yeah, so yeah, focus on the good and bring it into your life.
Jeff Galvin: Yeah, so I don't want to end this interview without, you know, just asking you a really general question about lessons learned from a very interesting life and sort of main themes that you think folks that might be watching this video who are either HIV positive or, if they're HIV negative, interested in this whole group of people that are dealing with something different like this, are there things that you've learned from your history that are just general themes that you might want to share with us?
Diana Koss: Sure, I mean, I think we touched on everything so far. I think it really is focusing on what makes you so amazing and that's what's going to attract and magnetize other people around you, and you're going to find the right people for you in that regard.
And also, HIV has helped me find the most genuine, truest connections that are very deep to its core that I could never imagine I would have. Um, man, what else?
I think also, this is because mental health plays a huge aspect with HIV. Um, so it helped me a lot through tough times where even when nothing is fine, everything is fine, and everything will always be fine. You're just stuck in a rut right now, but when you imagine your life 10 years down the line, you're going to look back and be like, "I needed that experience and there was a reason this happened and I'm much better now." And if I could go back in time and hug younger Diana, I would just tell her, "You have no idea how beautiful your life is gonna be. You can't even imagine it, and you just don't know what's in store for you. You just gotta keep moving forward, as painful as it may be right now, just keep going."
Jeff Galvin: I think that is, you know, that's just wisdom for everyone. That has nothing to do with HIV. HIV could be your challenge, but anybody can have some major challenge in their life, and this idea of remembering that the problems are temporary, right? Like when you're in a rut, if you're just thinking about that rut, instead of reassuring yourself that, "Yeah, of course, life has ups and downs and right now I'm on a little down, but then there'll be in up, right? You know, that's the way life is." Because as I was listening to you, I was going like, "She's not describing Diana's life, she's describing my life." I remember exactly that same way.
Okay, well that's a great way to wrap this up. This is why I highly recommend that people go to your YouTube channel and just soak this stuff up. Diana, you're an incredibly positive person, and coincidentally HIV positive too, amazing, but a positive part, and all this great stuff about you, it comes through your videos, like it just shines through, and I've so enjoyed the ones that I watched, and I learned so much from this conversation, but I also learned from those other videos. I bet you there's just a gold mine in there for people that are HIV positive or just people that are just dealing with life. It’s just normal stuff. And it'd be really wonderful if people that don't have HIV will go in there and listen to that stuff and understand more about connection and living a fulfilling life, because there are things that you've learned that will help everybody on their journey, and I just think you just do a great, such a great job describing it. So thank you so much for being on the show today with me. I really appreciate it.
Diana Koss: Thank you so much for the very, very kind words. I can only say the same. It was so much fun talking with you Jeff. I think you're such a beautiful soul as well, and I wish the interview wouldn't end.
Jeff Galvin: Wow, I mean, I'm so touched that you said that. Well, let's talk again someday, and hopefully one day we'll meet in person.