Episode 97: HIV/AIDS Activist & Entertainer Jahlove Serrano

Episode 97: HIV/AIDS Activist & Entertainer Jahlove Serrano

Overview

TW/CW: This episode includes brief discussion of sexual violence and suicidal ideation.

Jahlove Serrano is a health educator, youth advocate, HIV/AIDS activist, androgynous model/runway coach, drag Queen, background dancer, and choreographer to the stars. He's a Guatemalan/American native of the Bronx, New York, and contracted HIV a couple of days shy of his 16th birthday. Upon diagnosis — and as he learned more about the experiences that led to diagnosis — he decided to take a leadership role in his community with the public admission of his HIV status. Working in the field of HIV/AIDS prevention, outreach, and research (on a local, national, and global scale), his mission is to combat the ignorance and stigma around HIV/AIDS and to address the needs of HIV-positive — and negative — youth. Jahlove has worked with NY AIDS Institute, National Gay Mens Advocacy Coalition, The Global Network of People Living with HIV/AIDS North America (GNP+NA), AIDS ALLIANCES, The White House, and The Department of Health. He's currently featured in NYC’s Care campaign, the national HIV Stops With Me campaign, and globally in Janssen’s Positively Fearless campaign. Jahlove uses his entertainment platform to promote HIV/AIDS awareness and education throughout the United States and beyond. And…he’s both insightful and open, while maintaining a joy and positivity we can ALL connect to.

Takeaway

Transcript

Jahlove Serrano HIV AIDS Activist Drag Queen Dancer Entertainer Uninvisible Pod

Lauren: All right, guys. Thank you so much for joining us. I am here today with Jahlove Serrano. Jahlove is a drag entertainer. He's also an HIV and AIDS activist, and a health educator, and he himself lives with HIV. So he's going to tell us all about it. Jahlove, thank you so much for joining us on the show today. We're so honored to have you on.

Jahlove: Thank you, Lauren, so much, for having me on. There can never be enough conversations about health, wellness, community activism. I mean, I think it's a continuum and that's why we're here. We're here to be the voice of the people, in all voices.

Lauren: Yes, absolutely. And your voice is a very strong one in the HIV/AIDS community, and I am just so excited to hear more about you. Let's just start at the top of your story. Can you tell us how you first got your diagnosis and what steps you've taken to control your health since then?

Jahlove: Oh, absolutely. So, we're gonna go back … not to the beginning, but somewhat the beginning. I was born and raised in the South Bronx, in an Afro-Latino Catholic-inspired house. We were six siblings in a two-bedroom apartment. I've always felt like the black sheep of the family. But I always knew there was something different about me, right?

I kind of did things way more different than the boys. Seeing things that my mom and my sister were doing … that felt more natural to me.

Entering high school, I knew that I wanted to explore my sexuality. And exploring my sexuality, I was on the spectrum of, like, I'm bi-curious. All these things. But my friends were, like, “You're gay.” 

Lauren: That’s hard! When you’re not ready to accept that for yourself yet, it’s hard to have people be, like, “You’re gay.” When you’re not ready for that.

Jahlove: Exactly. And my mom’s sex ed was, “Don’t bring a girl home pregnant.” I already knew … check, that’s not gonna happen! And then the high school curriculum was so heterosexual-based. I knew everything about HIV, sexually transmitted diseases, infections, pregnancy. But because of the teaching, I only associated with that   happening when you engaged in heterosexual sex.

Lauren: Absolutely, yeah.

Jahlove: So because the sex ed curriculum was not comprehensive, or inclusive to the LGBTQI community, I took the liberty among my friends to be one of the first ones to start engaging in sex. Because I actually lied about having sex to gain popularity.

Lauren: Wow, gotcha. Yeah, of course.

Jahlove: We all have that one friend in high school that said they did it. We didn't know they did it, but they have good enough information so that they become that go-to person. So I became that person. 

Lauren: You were the Samantha! (laughs)

Jahlove: Yes, I was the Samantha.

And so lying about having sex worked, and I became super popular.

But then people started asking me questions I really couldn’t answer. So the thing that I needed to do was to lose my virginity. And so I decided to lose my virginity my second day of my sophomore year of high school. I met this guy in the Village. I didn't know if we were going to connect, but I was, like, if I see him again, I'm gonna give him my number. I was happy to go to the Village again, where a whole bunch of gay people in New York City hang out. And we exchanged numbers. And I knew then that I was going to lose my virginity. We exchanged numbers, we talked for a few. I skipped my second day of my sophomore year of high school to have unprotected sex — and contracted HIV.

Lauren: Wow. Is that something that left you with fear about sex, too, because your first sexual experience was one that left you with a diagnosis?

Jahlove: Absolutely. And it definitely changed the landscape of how I view sex, myself, life — completely, because I learned later on in life that the consensual sex that I had actually turned into rape. Because being so inexperienced with my first sexual encounter, I didn't want to continue, but he was, like, “Well, you're here. I want to finish." And I had to wait. I was a smaller, frail guy. He  was a much more advanced, bigger guy than me. And I learned later on that ‘no’ means no … even though you can stop for consent and that if you do not want to continue in that interaction, your wishes should be respected.

Lauren: Absolutely.

Jahlove: So that being said, and then also finding out later on that this guy was HIV-positive, I was just, like, oh, okay … so the first time I have sex, I contract HIV. And also to have a story of rape, and still not exploring my sexuality to the fullest … I got kicked out of my mother's house for being gay, and other things.

Lauren: I was wondering whether there was going to be a strict Catholic code involved there.

Jahlove: Oh, yeah. Oh, completely. Absolutely. And so picture this: 2001, I lost my virginity, didn’t know at the time that I'd contracted HIV, got kicked out of my mother's house, dropped out of high school, and turned 16.

Lauren: Wow. So how did you get from there to here?

Jahlove: ...

So I'm kicked out of my mother's house, I'm homeless, a high school dropout.

Thank goodness for my aunt taking me in. My aunt took me in, but I knew that I couldn’t live in somebody else's house for free. So I started working at McDonald's for $5.15 an hour; that was minimum wage then.

Lauren: I remember! I was in New York then, too. I remember!

Jahlove: You know! So I'm working now, living in my aunt's house, and the guy that I had unprotected sex with — I found out it was rumored he was HIV-positive.

Lauren: So he didn't know at the time?

Jahlove: No, he knew. 

Lauren: But he didn’t share it.

Jahlove: No, he didn’t share it with me. I found out that he was able to share it with his whole congregation, his church, but he wasn't able to share it with me. Which, I don't fault anybody for me contracting HIV. If anything, it was the system … I would have had a better understanding of who I was.

Lauren: More inclusive sex education would have made a huge difference.

Jahlove: I can't stress enough how that could have been a huge difference. And that's what I do, part of my day. So with the rumor in my head, not knowing that I could have gone to get tested … because I thought that, at the time if I tested positive, because I was a minor they would call home. Not knowing that when it comes to New York State law, as long as you're 13 years of age and above, without parental consent, you can get tested for any STI, STD, including pregnancy, and now also treated. Treatment for HIV without parental consent has been recent, but testing has been in law and practice for years.

Lauren: I didn't even know that. We're learnin’ right now, guys. You can get tested, and no one has to tell your parents if you're over 13. 

Jahlove: In New York State!

Lauren: In New York State, yes.

Jahlove: Other states are different. It took me a while to get tested, so I didn't get tested until I was 17, going on 18.

Lauren: And you didn't have any symptoms, obviously, it sounds like.

Jahlove: From the first time I contracted HIV through sex, I didn't have sex with anybody until I got tested. And I didn't know until I started learning about HIV, throughout those years before I got tested, I was getting symptoms, getting infections.  Even when I was seroconverting, which means when the virus was taking over my body after my first sexual encounter, those were symptoms of me developing HIV. The effects I was experiencing, not knowing, were thrush, which is a fungus in the mouth; PCP pneumonia, which is a certain type of pneumonia that HIV-positive people have when their immune system is compromised. But I had no idea. I had shingles a lot. Lord, have mercy!

Lauren: But you were also young and bouncing back probably.

Jahlove: Yeah. Young and bouncing back. But I tell you, nobody ever wants shingles in their life!

Lauren: No, I've heard it's really painful, yeah.

Jahlove: Oh, you don't want even the air to touch you. So, experiencing all these things, not knowing they were connected to HIV, finally get tested. But at that time, the standard procedure was that you waited two weeks to get your results.

Lauren: Yeah, that's a long time to wait with such a serious diagnosis hanging over you.

Jahlove: Yes, and then all the things that go through your head, right?! You're just like, I don't want this disease.

You're thinking about the should-a, would-a, could-as. What could you have done differently?

Lauren: Well, the stigma associated with HIV and AIDS and this idea that it's like a death sentence, the same as getting a cancer diagnosis … when there are so many people like you who are living and thriving with the right kind of treatments.

Jahlove: Yeah, and that's because … fortunately, and unfortunately … I guess Google is our friend, but then Google also shows you some of the beginning history of the epidemic, and also the imagery. I have to combat that, still to this day. And then also it was highly stigmatized as  a gay disease, and then a Black gay men disease.

Lauren: Yes, absolutely. It's not thinking about the greater community; it's people going, well, it's not affecting me, so it's not my problem.

Jahlove: Right. Even with the numbers coming out that the highest cases are … here’s a strong fact … The highest cases in the United States are men who have sex with men. So that's why it's perceived the United States as still a gay disease. But globally, HIV is a heterosexual disease.

Lauren: Yes. And that doesn't surprise me actually. Especially in Africa … there are some really high rates in certain countries, aren't there. Because there's even more stigma in some of those cultures about whether or not you share it with a partner, and people having affairs and multiple partners and things like that, and passing it on to their children.

Jahlove: Yes. Because in America, the HIV strain that we have here, the guy is the more highly infectious partner. In Africa it’s HIV strand 2, where the woman is more infectious than the guy.

Lauren: Wow. Oh, gosh, I didn't even know there were two strands.

Jahlove: Yeah, there are two strands, and subcategories that are more prevalent in communities. 

Lauren: You are dropping some major knowledge bombs on me today. I love this.

Jahlove: Yeah.

So now I'm tested, waiting two weeks, I'm scared out of my wits. 

Lauren: Did you tell anyone, too? Were you completely alone in this?

Jahlove: I was completely alone in this because I had already heard the rumors that HIV is something that gay people get, and die from. I was already not even out to my family. To have this associated with already knowing how they felt about gay people, I was just like, okay, it was something that I had to deal. And so when I finally got my diagnosis, I go to the clinic, everything started. Everything happened in slow motion. It's like, when you're gonna get some devastating news, your world becomes a movie. I went to the clinic, the door closed in low motion. I felt like I started hearing violins, I'm looking around. Something that you see out of a movie screen, but it was actually happening. And when the words rolled out of my doctor's mouth —“You’re HIV-positive” — it went in one ear and out of the other. They gave me all the pre-counseling … you know, what the next step was … but in the back of my mind, since I was gonna die tomorrow … let me do everything I wanted to do today. And so I left the clinic that day, and I completely went into denial mode. I just started to live for me. I got myself back into high school, graduated high school.

Lauren: That’s amazing. So it motivated you to succeed? 

Jahlove: It did. Because there was a short period of depression and suicidal thoughts. Because I was just, like, I don't know how I’m going to live. But then I went into this survival mode. I was, like, okay, wait, no, I'm young, I want to accomplish more things. And that was the motivator for me to go back into high school, graduate, get myself into college. I always wanted to pursue being a professional dancer/model, and all these things started happening. Where I was failing, I wasn't taking my medication, while I was pursuing all the great things, and my life was looking great. I was in care at that point, I finally did have a doctor. But because of the stigma, and me not self-internalizing and accepting my diagnosis, I just was, like, that's one thing that I don't want to do. It took for me to get an AIDS diagnosis and develop a form of cancer, to be like, this is your reality. If you don't get your life on track, you won't be here to see the rest of your life. That happened to me around 2008; 2008, I landed myself in the hospital, lost 11 pounds. I could have been around 150 to 160 at that time.

Lauren: And you're a tall guy too. So that's very thin for you, yeah.

Jahlove: Yes. So I lost 11 pounds. I was in the hospital. The doctors didn't know what's happening. They started pretty much saying, “I think you need to start making arrangements, knowing who to call, because we don’t think you’re going to get past having a diagnosis of AIDS and cancer.” 

Lauren: And you're in your early 20s at this point?

Jahlove: Yeah, early 20s. And I remember it like yesterday. I'm not a religious person, but I'm very spiritual. And I said a prayer in the hospital bed. They sent me home after that week of treatment in the hospital with a bag of medication and pretty much, “Godspeed. If you come back, it will be a miracle, but we don't see that.”

The resilience that I had, I was like, I want to live, I want to live.

The doctors also gave me information, “Stick with your medication because the cancer that you have could go into remission once your immune system is healthy. You can get healthy if you stay consistent with the medication.”

Lauren: This is further proof about cancer being a chronic illness. And also what I love about the way you're sharing the story, and what I want everyone to really key into, is that this concept of denial — this idea that when you get a diagnosis — it's suddenly the end, everything's in slow motion, and you just go into survival mode and you don't take care of yourself. This happens to all of us living with chronic illness, at some point. I really want everyone who's tuning in to understand that AIDS is a chronic illness, HIV is a chronic illness — just like lupus is a chronic illness, just like MS is a chronic illness. There are just different ways to manage them and different ways to contract them. But the reaction, emotionally, is exactly the same.

Jahlove: Yeah. And then how people have their levels of how they want to be empathetic to you based on your condition. And I'll talk to you about how that shows up in the HIV world. So now, I'm out of the hospital. Now I'm sticking to my medication. Because of the medication and my resilience, I gained my 11 pounds back. Cancer went into remission, my immune system had a slow recovery to a healthy level. The cancer damaged my immune system, but I was still able to come back bigger, better and greater. There were a few jobs that I've taken in my journey as a peer educator to educate the community about HIV and AIDS. I left it at one point, but after my full recovery from being in a hospital and therefore not seeing me living, I’ve dedicated my life to educating people about my diagnoses, and bringing a strong awareness to HIV and AIDS. And how that came about was, that you really need to become your own healthcare advocate with your diagnosis. Because the minute that you're able to fully get all the education that you need … and never end research on whatever illness that you have, because there's always new information and medication coming out. And so I needed to know all that was happening in my body so that when I was with the doctor having a conversation, it was a me-and-you — and not you talking to the illness, and I'm just staying idle. And that really helped because I was, like, okay, now I understand, now I’m better able to have the conversation with people, with partners, friends, communities, as far as what's happening with me. Because people are going to ask the question as soon as you start telling your story, or even if you start opening up to one person, the questions are going to come. And I think the best way for you to help yourself is to have all the knowledge you can so that you can make the conversation easier. So you can start building a strong support system. Because some people honestly really don't know how to be there for you. They’re like, “Do I need to give you a hug? Do I need to be sad?”

Lauren: Again, such a similar experience in so many other chronic illness groups. People don't know how to react, so you have to teach them how. Which I love about that.

Jahlove: But see, here comes the way they choose to be right.

Some people do believe it is your fault if you contract HIV through your behavior.

They’re, like, “Yeah, but you did that to yourself.” Wait, wait …

Lauren: Did that to yourself without any knowledge about how it could be contracted, yeah.

Jahlove: But if you are perinatally infected with HIV, there is a whole different love/care/support for individuals that were born with HIV, versus individuals that contracted it through whatever behavior, right? And it’s, like, if we're going to care about HIV, if you're gonna show your care here, you have to give it across.

Lauren: Yeah, but this is also connected to how prudish and puritanical our roots are as a country, too, right. Anyone who's contracted HIV is vilified because it has to happen through some kind of sexual or blood contact that must not be a good one. We're vilifying sex, we're vilifying all drug use, things like that. And that's not necessarily the story. 

Jahlove: It’s not necessarily so. And that also shows up in healthcare. It shows up in how your provider talks to you or polices you and your HIV, making sure that you're doing the right thing. And I want to make it very clear that your sexual health is your own right and responsibility. It is not the responsibility of an HIV-positive person to make sure that your status stays negative. There’s a double standard … this person gave me gonorrhea, it was treatable and I was able to move on. But HIV … they tried to murder me! That's not fair. If we're not gonna treat all STI and STDs the same across the board, then let's not do that solely just for HIV. Because my job is to maintain an undetectable level, maintain my health status, make sure that I am doing the right things by me. And that you are doing the right things by you to protect yourself, to make sure that if you're negative, that's your job, too! But there's this whole notion that one single person … the HIV community, whomever I've ever contacted, and whether I want to speak with them, just talk to them … that I am fully responsible for their sexual health. Because I’m HIV-positive.

Lauren: And it takes two!

Jahlove: It takes two, baby! (sings)

Lauren: It takes two baby, yes. (laughs)

Jahlove: It takes two! And I'm very open about my status. There's some times I’m, like, you don't know … !

Lauren: (laughs) Like, how do you not know? This is my calling card!

Jahlove: Who’s not Googling anybody now? (laughs).

Lauren: Right! You obviously haven't Googled me, have you!

Jahlove: You don’t see the billboard right there?! (laughs) And I know that sexual health and wellness is whole conversation in itself. But, you're demanding for me to be fully open with you about my status. I don't know where you will go, or where this is gonna go, at the end of the day. I already know that either you're gonna accept it, or you're just gonna be, like, this is not something for you. And that's not fair because you didn't even fully get to know me.

Lauren: Yeah. What about the fact that this other person, this fictional other person we're talking about, is a totally judgmental person that no one wants to be around anyway? Because they have a bad attitude.

Jahlove: Right! What if you snore?

We’ve got to be able to love on each other, and again, just know that HIV is a chronic illness.

It's not those images we had at the beginning of the epidemic. I'm a human being that has the same desires to love and be in a healthy relationship. I'm well aware that I have an incurable disease, but that is my plight that I’m taking care of. And I’m also advocating, so get your things together!

Lauren: Yeah, absolutely. Well, you went from someone who didn't get the education, to someone who has gotten so much education that now you're educating others. I’m curious to know how you found that route through your own health journey. Was it because you were given these pamphlets by your doctors that you started Googling stuff and finding support groups? Because it sounds like you found your community in reaching out and teaching others.

Jahlove: So, my nurse practitioner … shout out to all the nurse practitioners in the world! I prefer nurse practitioners over doctors. It's a nurse and a doctor, but who doesn’t love their nurse, that extra care! 

Lauren: It’s that extra human care, isn't it?

Jahlove: Which makes a world of difference. Not to say that doctors don’t have the touch of a nurse practitioner … shout out to doctors. I just like my treatment through a nurse practitioner.  I have a doctor now, and he’s pretty cool.

Lauren: Yeah, but it sounds like you've also like found the people who work for you in the right way.

Jahlove: Yes. And we're gonna talk about that. My health practitioner pretty much grabbed me up and was just, like, “You are failing in this relationship. And when you’re failing, I’m failing — and I can't do all the work.” Seeing that I was getting depressed, I really wasn't there, she was, like, “I think you need to be here.”

She sent me to this training that changed my whole world.

She sent me to a training that was full of HIV advocates that are educators. And all the youth that were there were also HIV-positive, behaviorally affected and perinatally affected. And that was the first time that I was around a community that were so open about their HIV diagnoses. Outside of the training, we were talking about experiences, like, “You're on this medication?” “This gives you this side-effect … “ Finding your tribal communities that really relate to you, your illness, is so important, because then you really, truly feel like you're not alone.

Lauren: It sounds like it also empowered you to become your own health advocate. Because prior to that you weren’t, and then you were able to click in and really empower yourself.

Jahlove: Yes, it was training to become your own health advocate. 

Lauren: Okay. Oh, well, there we go!

Jahlove: And It completely worked. Because after that training, I’ve maintained friends, lifelong friends. I became a trainer myself, a mentor myself. I became more empowered to educate myself and educate others. They gave me the proper tools and verbiage to talk to my provider. It was really something that changed my life for the better. I don't know what type of person I would be had my nurse practitioner not recommend this training for me. And I was very skeptical!

Lauren: That’s part of the denial. A lot of us are not joiners. We don't want to join a community; that just sounds a little icky. And then you join the community and you’re, like, oh, oops, I was wrong about that, this is great.

Jahlove: So, so wrong about that. And that's what gave birth to the person that you see here today.

It gave birth to me really taking back control of my life, my health, really giving me more purpose and meaning.

And that I couldn’t complain if I wasn't trying to be part of the solution, right? If I'm saying, why are people so ignorant about HIV, and I’m, like, “Well, what are you doing? How are you combating that?” Which led me to become an HIV test counselor, outreach worker. I started going to high school, college and community-based organizations doing HIV education, one-on-one, telling my personal stories of HIV. Which led me to my being on national and international campaigns and going to national and international conferences. And then also, it gave my entertainment another meaning. I've always felt like I could never fully express myself through words; it came out through my artistry and movement and dance. I was in a drama club, I was in so many things. And I thought, people grasp information differently when it’s entertainment. So that led me to infuse my love of HIV and AIDS advocacy with my entertainment platform. So now when you see me entertaining in drag, you know there's gonna be some HIV advocacy you’re going to get. You’re going to walk away and not only be entertained, but getting a bit more about me and my life experience. And you can actually say, I know somebody that’s HIV-positive and they’re really doing this. Because I know that it is imperative that I continuously shape the imagery of what people perceive and how they look at the HIV community. Because ignorance is still out there.

Lauren: And it sounds like, also, in being able to reclaim your life and your joy and your vivacity, your excitement about life … that all came with finding the community, becoming empowered, becoming educated. So in seeking information and seeking your tribe, you were able to feel joy even more deeply, and then express it in your work as well.

Jahlove: Absolutely. Because, let's talk about my intersectionalities.

I'm a Black gay man, living with HIV in the United States of America.

(laughs)

Lauren: (laughs) Those are quite a few flags you're flying there!

Jahlove: Right. I know I have to walk out into the world, and I know that there are groups that don't like some part of my being. That I'm not welcome in so many things. I have to also have a strong mental capacity to combat these things, and also manage self-care, manage my health. And I've found that through my advocacy, there is a joy, a resilience in fighting and tools that have helped me in my journey, in my working life, with all my intersectionalities.

Lauren: So beautifully said, and I think not only your own intersectionalities, but you also are advocating for intersectionalities outside of your own experience, too. You’re advocating very vocally for the trans community in particular, right. But in intersections with your own identity as well — the trans HIV community, or the trans and gay community. All of these intersectionalities for you expand into a wider inclusion, and advocacy platforms. Absolutely. And I would love to know as well … this idea of becoming your own advocate … it's one that I think is really hard to grasp for people who are living with a new diagnosis. Like it was for you. Do you think that becoming empowered, in becoming an advocate for yourself, this has given you a new sense of being, a new sense of self, a new form of self-respect and love?

Jahlove: Absolutely. I don't think that we talk about how imagery plays on our psyches growing up. The doctor only talked to my mother, so I didn't even learn how to have proper patient/doctor dialogue until I got into my adolescence, which was another scary thing. That was another thing that I had to learn. Then talking about my sex life, and having to trust a stranger, and that from some of the TV shows that we see … doctors are judgmental. So that played on my psyche — and I don't want to be judged on my behaviors, because I already feel judged walking out into the world. So I had to unlearn, unpack all of these things. And once I knew that everything in life is about building relationships … first starting with myself, self-education … and having to have a better understanding from you and another person's perspective … is what made everything much more sensitive, to this day, for me.

Lauren: Absolutely. We're going to get into your experience in the health care system in a little bit. But I would love for you to also take us through what a typical day is like for you as you're balancing the demands of work and life. Do you still get flares or potential symptoms? Or is that all completely under control? What is your management of your diagnosis looking like right now?

Jahlove: So, pre-COVID …

Lauren: Yes, pre-COVID is a whole ‘nother kettle of fish.

Jahlove: Okay.

So pre-COVID, what my life looked like … I made a strong decision that anything that I do has to bring me joy.

Has to bring me joy; it has to bring me joy. And so, if I wasn’t sharpening my skills and my artistry, or working on my physique … I moved to Staten Island about three years ago, because I knew that self-care was where I was failing — because I was being so available to everybody. When you become an advocate, you tend to put yourself on the back burner, and just be there for everybody. And when everything wasn’t working right for me, and I think situations just got shook up … so to remind me that self-care is key, I moved to Staten Island, and then I became more stabilized and I was able to focus more on myself. I was, like, okay, what are the things that you want to focus on? My artistry; understanding my physical health, but matching my physical health with my mental health. I love to cook, I love dancing — so the things that brought me joy. Also taking less work, because I told myself why go for the high dollar if you're not going to love it. So I said, I will take a pay cut for the things that I love to do, because that is going to make me want to wake up and be fulfilled for my day. So that was my daily activities — working on me, working on my art, posting here and there, walking away, managing self-care and stress, and all these things. And friendships. But that was pre-COVID. Now, during COVID, it’s still all of that. But it's also now amplifying voices that I know need help. That need my voice, that need my body. But also knowing that I have a compromised immune system and that I can't do any and everything. But the bits I can, I'm just going to amplify them. What has been helping me with my mental health is that I feel like I was built for this, that I have residual strength that I preserved for this specific time in my life. And just tapping into those wells, and just getting them out. And making people feel uncomfortable. Because it’s, like, “Why is Jah … ?” I've set this precedent online, that you’re only going to see these things. People did not know that I was advocating in person, because not everybody needs to know what you're doing. I don't want to always be the person parading, like I did it for a parade. No.

Lauren: It’s not about being performative. It's about actually doing the work.

Jahlove: Exactly. So even though we need to keep our social distance, now you're going to see all of me coming to the forefront, because there are voices that need to be heard.

Lauren: Yeah, that's beautiful. It's amazing. And I'm wondering as well … this is an invisible diagnosis. You walk down the street and no one's gonna look at you and go, oh, he must have HIV. Have you been in situations where you've been confronted and forced to justify your illness to other people? Even your family early on. How have those situations played out for you?

Jahlove: I don't think the justification of my illness; I think it’s a justification of why I need to be so public.

Lauren: So people have taken you at your word when you’ve said, “I'm HIV-positive.” They've gone, “Okay.”

Jahlove: Right. Because, again, I'm gay, so there’s an  association.

Lauren: Like, if the shoe fits, right, yeah. Consider your preconceived notions, guys, okay!

Jahlove: I will never forget this … I told my story for a Spanish newspaper article. I hadn't told my family anything. But I already knew I wanted to make this decision to educate others.

I told my story for a Spanish newspaper article, which came out on December 1, which is World AIDS Day.

I was in Albany doing a World AIDS Day event, educating high school students up there. And so my sister-in-law’s neighbor saw the newspaper article and brought it to my sister-in-law’s house, and my sister happens to be there. She brought it to my mother’s house, and they read it as a family, and then my sister texted me to say, “How could you put your business out there? Now you’ve put a shame on the family.”

Lauren: Wow. It sounds like they were still struggling with the fact that you were gay, let alone the fact that you were HIV-positive.

Jahlove: Yes! It was just like, we have to deal with these things internally. I guess they probably felt betrayed, because I didn't tell them directly. And these are reasons why I did it — because I'd probably know your reactions. And then the fact that now it's out there, it’s public … I didn't know, now the whole of NYC knows. And now this is a whole thing. Versus, rallying around me and supporting me, you’re shaming me — which led me to believe that my action was right.

Lauren: And this also brings us back to that idea of personal responsibility in your own diagnosis, but also in your relationships. You're responsible for sharing any concerns, but you're also responsible for being a good person.

Jahlove: Yeah. That's why I'm amplifying the voices, and the murder of a trans woman. Not only her, but by taking me under her wing. She became a mother figure to me, made sure that I went to school, made sure that I was going to a doctor, made sure I had medication; introduced me to more of my trans family of brothers and sisters, who taught me that not only do I have a title, but that there's rights and responsibilities behind that. They taught me how to be a brother, a son, an uncle. A lot of our families are so fixated on our labels and not the responsibilities behind it. Now, I'm gonna love you unconditionally, because that's just what it is. But respect is a continuing journey amongst all people in all walks of life. And you just can't stop short at just your title, because we're blood. She really shaped my life. And so if anything happened to her, I would be destroyed. If anything happened to any of my trans brothers and sisters in the community, I would be destroyed. And knowing that the trans community is being attacked by this current administration, from all angles, in all communities.

I think the life expectancy of a Black trans woman is dropping from 35 to 21.

It’s a serious issue happening across the globe, and especially in America. That's part of my reasoning. When one group of people that is supposed to love me and accept me and affirm me pretty much left me high and dry, she took me in. Knowing little bits and pieces of me, she said, “I got you.”

Lauren: Yeah, absolutely. How wonderful that you were able to connect with someone who was able to help you grow into a man that way, too. I mean, how beautiful. Let's jump into the healthcare system. Let's get real about it. Have you experienced prejudice? Have you experienced privilege in the health care system? Especially because of the way you present. You’re a Black man walking into a health care facility. Can you see your circumstances being different … maybe if you were female? Maybe if you were a white man walking into the doctor's office? How do you think race and gender are affecting your experience in the healthcare system?

Jahlove: Do we … ? 

Lauren: We’ve got as much time as you need!

Jahlove: We’re talking about Black Lives Matter. That movement is specifically talking about police brutality. But there are other issues, other examples …

Lauren: Examples of systemic racism.

Jahlove: Yeah, and health care definitely plays a role. So in the beginning of the HIV and AIDS epidemic, it was seen as a gay … they called it GRID. And it was white gay men — alongside Black gay men — but leading the charge were mainly white gay men who advocated to have medication …

Lauren: Yeah, because they had privilege.

Jahlove: Right. So that happened. But when they were advocating, they left out Black and brown communities, women, Black men, Black gay men. So when it came to services for Black gay men, such as myself, healthcare really didn't know how to handle or treat us. Even services were already scarce. Resources were scarce.

Lauren: And this is in the last 20 years; this is in the 21st century, because you were diagnosed in 2001. Well, you contracted it in 2001, but you were diagnosed in 2004.

Jahlove: So, now … have I experienced things? Absolutely. I will say that my adolescent care was the best care as an HIV-positive person; the treatment, the practice of standard healthcare is way different from adult care. Adult care is where I’ve seen a lot of those pre-judgments. Health care/adolescent was great, but because I was still on my own when it came to support and services, that’s when it was, like, “You need a parent for this.” And I’m, like, “I don't have my parents. I don't have this.” And it was just, like, “Well, we really can't do anything for you." And I’m, like, “You already know the services that you can provide me. Housing is health care. Now you deny me housing because I don't meet a certain criteria. And if I'm already telling you that I don't have this, you're not seeing that you're not aiding me, you're just doing your standard protocol.”

In health care, I was receiving all the services, but my health was failing because my support services weren’t fully available. 

Lauren: And actually also ageism plays into that, the transition between adolescence and/or pediatric and adult care.

Jahlove: Yeah. When I got into adult care, it was a totally different ballgame. I went from having a proper greeting at the door, snacks and X, Y and Z. It was, like, why are you not saying hi? 

Lauren: Yeah, the bare minimum.

Jahlove: The people at the front gate are really critical to the way people treat their health care. As an adolescent, I was always asked, “Hey, are you comfortable talking about this?” In adult care, it was, “We're going to talk about this,” not knowing where my mental health was.

Lauren: Not knowing what your personal boundaries are. That was a form of ageism that you experienced; that was a form of prejudice that you experienced in the healthcare system. What about, also, your race playing into this, being a Black man?

Jahlove: I would say, definitely my race played a part. My race definitely came into play as far as where my risk factors lie, where the questioning of me and policing of my sexual behaviors have lain. It was just, like, “Are you doing this? Are you making sure you're doing this?” I’ve asked other people, “Are these the conversations that you’re having? Are these the things that are happening when you are you receiving these types of services?”

Lauren: It sounds like you were presumed to be irresponsible because you're Black.

Jahlove: And gay.

Lauren: So the pre-judgment that you were receiving from health care providers was that they had to do all the work for you, because you weren't going to because you're a Black gay man. That’s got to be really frustrating. And dehumanizing. I mean, this is your life.

Jahlove: It was not empowering at all. I got to a point where I was just, like, “First of all, the reason why I'm bougie is because I have an expensive disease. The disease that’s flowing through my body is bringing multi-millions to people — pharmaceuticals and doctors and social workers, and X, Y and Z. So you ought to be treating me with the utmost respect when I walk into this place." I had to start treating myself and get educated and empowering other positive people, “Don't walk into that place feeling defeated. These people are there to aid you. They’re supposed to answer your questions. They're not supposed to police you. You are supposed to feel empowered every time.” And the point when I started learning how budgets break down, how much my medication was costing, the whole cost of my care … and I can't get a greet and a smile by the people at the front who are going to check me in? That is a problem.

Lauren: Because they're profiting from your illness.

Jahlove: Right, profiting from my illness. And you don't understand how your minute interaction with me, that you may think is minute, can really …

Lauren: … sets the tone.

Jahlove: Right, sets the tone. Makes me want to come back or not come back.

Lauren: Would you say, given your experience and the experience of others in your community that you've spoken to … would you say that racial and gender inequality in the health care system is a public health crisis?

Jahlove: I think the New York State Department of Health has declared it. If you think about systematic racism, if you think about access to care, if you think about medical insurance, if you think about private versus public …

Lauren: This is access and education, too.

Jahlove: Right. If you think about when people are in medical school, and they’re taught to treat the illness and not the person — when HIV is all about the person before the illness … all those things come into place. And then if you're not talking about culture sensitivity, and how your background is different from mine …

I come from a Black and brown background where sometimes the best way to aid ourselves is with home remedies.

Sometimes we don’t look at conventional medication. And so if I have that knowledge, and you’re throwing medication at me, and now you're seeing that I'm not adhering to my medication, you didn't even care to check why. Then also health literacy. We could go on and on. And then again, using your platform to talk about the trans community, and how there's not enough information, data, research. How doctors are misgendering the trans community. The trans community has felt violated just even walking into the healthcare sector. Because now you're treating me like a learning opportunity. And you went to school for this.

Lauren: Rather than actually looking at people as human beings — which is exactly what you're asking for, and what the community is asking for. So talk to us about your advocacy work. How has the work that you're doing begun to bridge the gap in some of these issues? Because you're going out there and you're teaching health literacy.

Jahlove: Yes. When you get into advocacy and activism, you learn how to chase the dollar, you’ve got to go to legislative day, you got to talk to local officials. It's so …

Lauren: It goes fast. You can be doing grassroots, you can be doing legislative, you can be in DC lobbying. Absolutely. There are so many different directions you can go in as an advocate.

Jahlove: So I started on a community advisory board …who does not start on a community advisory board. I graduated from community advisory board to state advisory, to national advisories. And the reason I kept progressing is because I kept hearing, “We can't do this.” And I’m, like, “Why can't we do this?” “The red tape.”  “What is this red tape? Why does this red tape mean?!”

Lauren: It’s the money trail, that red tape.

Jahlove: Right. So I had to keep climbing in my advocacy and work on policy that affected my community, because the red tape was resulting in people not having access. That's why when I talk about my HIV journey, that it is no surprise that a same sex ed curriculum is not in high schools … it’s because it's a gay agenda. And I'm just like, okay, so now I’ve got to focus on the transmission versus the act, because then that helps me at least speak to the whole room.

Lauren: It's hard enough just to keep heterosexual sex ed in schools right now in places, too. To me, it's like all I see is this endlessly, frustrating … It's enough that you are a Black gay man who is living with a stigmatized disease. But that on top of that, what you're pushing for in terms of access and literacy, and information and education … it’s being pushed aside by conservative agendas, which are largely in denial about the existence of the gay individual, let alone the existence of diseases like HIV/AIDS. Because they don't want to consider the community and consider everyone and everyone's proclivities in making big decisions when it comes to the way we educate, and the way we legislate.

Jahlove: Right, which my becoming a local politician … that's where it's actually leading to. That's what people have been saying, that's like the next level. And that's why I've always worked hard in policy, because if you're not at that decision-making table, you become dinner, lunch.

Lauren: Yes. Right. So you pull up a chair so you don't have to end up on the plate.

Jahlove: Absolutely. And if you don't know these things, you're not gonna be there. You're just gonna stay on a community advisory board level. And I always empower people: Keep going up those multi tiers, because you have to be in those places. You have to line it up, and you also have to be the one to keep doors open. That's how I go with my advocacy. Some people have opened up the doors for me already, so that it's easier for me to continue the way I'm going. It does get frustrating, but I know that there is work to be done. I was able to do my advocacy. One of my highlights was that I was invited to the White House during the Obama administration.

Lauren: Oh, what a dream.

Jahlove: To give my recommendation. The first president to ever create a national HIV strategy plan for the United States. The United States prior to that was giving funding to other nations, but the only way for them to get funded by us is they have to have a national strategy plan. Mind you, so many things were happening in our own backyard. And it took the Obama administration to come in for us to actually have a national HIV strategy plan. And I was one of the people to be invited to give recommendations on what the national strategy plan should look like. That is where my advocacy has led me to.

Lauren: Hopefully that wasn't the last visit to the White House. Maybe the first, but not the last? 

Jahlove: I don't want to go there now.

Lauren: No, I don't think any of us want to go there. Don't you worry. (laughs)

Jahlove: No. This administration, when when they got in, they actually removed the national strategy plan.

Lauren: They have removed a lot of freedoms that were afforded many different groups.

Jahlove: They canceled the HIV/AIDS advisory board.

Lauren: It’s really disgusting. And for those who are listening and going, like, why is that a big deal? It's a big deal because this is an expansion of systemic racism. When you deny basic rights, basic human rights, from advisory boards onward to different groups of people, different intersectional groups of people, you're denying their humanity.

Jahlove: If we can see this …? What are the rose-colored glasses or dark shades that you are wearing?

Lauren: Well, doesn't it come back to what you said before we started the interview — or maybe this was during the interview … about personal responsibility. If it's not affecting me, I'm not going to think about it. And that's exactly what the Black Lives Matter movement has brought up — this idea of Black Lives Matter versus All Lives Matter is a perfect example. The idea here is that if it doesn't affect you, it doesn't mean it shouldn't still matter to you. If you're a white person who's not affected by these racial inequities, that doesn't mean that these racial inequities aren't affecting everyone else in your community. And it doesn't mean that you shouldn't stand up.

Jahlove: At the beginning of the COVID pandemic, when all countries were all on the same boat, we were all caring …

Lauren: It was like New York after 9/11 for a hot second.

Jahlove: And it dealt with health and wealth, and caring because, honestly, I felt like the world started catching up on me because once I got diagnosed, I kind of became a germaphobe.

Lauren: Of course, because that could make you have a flare, and end up in the hospital, because you could be getting germs from other people.

Jahlove: Right, because I have a compromised immune system, and going into high schools and colleges, going on the train and touching poles … and people weren't keeping themselves home when they were sick. This made you be conscious not only of yourself but also of other people.

Lauren: Wear a mask; just wear a mask, guys.

Jahlove: Catching up. And then … George Floyd. We were getting there. And it became a political thing now … is it my right to wear a mask or not. 

Lauren: Yeah, this country is really backwards. I'm really sorry that we have to have this conversation under this mantle, that what's hanging over this conversation are the deaths of countless Black men and countless trans men, countless trans women, countless Black people, countless Black women who have been killed at the hands of the police and other systems in power in this country. There's that happening. But there's also, as you touched on, this removal of rights that had been put in place for people in these intersectional communities, that is happening at the hands of the current administration. And there's a global pandemic, and no one's wearing a damn mask! So this lack of care for anyone else … I mean, if there's anything we've learned here today, it's that everyone has a different story. Everyone has an individual, very human story, and we need to care about it. And we need to wear our mask to show respect for other people; we need to pull up and shut up.

Jahlove: ...

I tell people, I'm living in a pandemic with an epidemic.

Because also, the access to testing and care for HIV-positive people has also been very troublesome, and during this pandemic were shut down. All these things. I was, like, I'm calling my pharmacy. I need to work on medication and get it approved. I already knew I would have this conversation with my doctor. We were already talking that it was okay to get a flu shot. But not everybody had that understanding.

Lauren: People are still learning.

Jahlove: Yes, still get a diagnosis, still need to get treatment. And then seeing how people were already policing people with COVID. It was just so similar.

Lauren: It's expanding even more, from something small to something global.

Jahlove: Yeah, one of my favorite YouTubers would say: America is literally the ghetto.

Lauren: We have some major improvements that need to be made, absolutely. And if we've learned anything from the pandemic, and what's been happening to care for the communities that you're a part of, it's that everything's going backwards and upside down. Sometimes I’m, like, we live in the upside down, because I don't understand.

Jahlove: I look at it like: Okay, if we can get to rock bottom and destroy everything, we have no choice but to build.

And that is like my saving grace. 

Lauren: That’s the hope.

Jahlove: That's the hope. Because we're not taking it any more. We’re not sitting down, we are building stronger ally-ship, we're all fighting for human rights. And just saying: Listen, you can't ship us on a spaceship. We all gotta be here.

Lauren: We're not all going to be able to afford to move to Mars. We’ve got to fix what we got on Earth.

Jahlove: Right! I told my girlfriend, I missed my spaceship Uber ride because I wanted to pack everything. Like, what do you wear to outer space?! Because I was trying to pack everything, I missed my ride. I was like: Earth ain't it for me anymore!

Lauren: (laughs) You probably have too many wigs to pack anyway! And it's frightening. I think this has got to be a time that's also filled with fear. I'm afraid. And I intersect with far fewer minority communities than someone like you does. That fear is palpable. But what's amazing to me is, I talk to you and I feel more hope than I did before I talked to you. We're all searching for something better, and we see something better on the horizon. And I guess we're all desperately clinging to that idea, right?

Jahlove: Yeah. We have to. One of my friends made it so clear to me, that we LBGTQI+, or just marginalized people … we walk into the world imagining the world that we are already living in. We come back to reality when some injustice happens to us. And then it’s, like, oh, snap! Now it’s time to take that imagination and make it into a full thing so that we know that these are avenues and building blocks that have to be in place.

Because we can no longer walk in the fantasy world. We have to be part of the solutions.

And they're going to be tough, they're going to be tough compromises and we may not have all our way. But I'm okay with meeting all communities in the middle. And that's why I'm so happy to have you as an ally-ship and just sharing a platform.

Lauren: Oh my gosh, yes, of course.

Jahlove: I tell people, I'm not gonna be in every room; I just need you to be the voice for me because now we've got to start being the voices for each other. And that's what I've been learning in this, that we have to learn how to be the voices for each other.

Lauren: I’m really excited for you to run for local government. You’re going to make a great politician! We need people like you, who are not only speaking from your perspective, but also amplifying the voices of others, to be actually getting into government and to be creating these legislative changes. Which you are already doing, but there are avenues to do it in other ways, and more effectively. And that's exactly what creating this change looks like as you move into the future. I am over here cheering so hard for you! (laughs)

Jahlove: I see my whole campaign. I'm telling you, there are people who are already ready to endorse me. They’ve said, whenever you're ready. That’s what I love about my artistry, that it is, literally, freedom. I can be politically correct. I can be political. As my art, you can't police it. It's how I display to the world. Some may get it; some may not. And that is a freedom and luxury that I don't have, often, as a Black gay man.

Lauren: But you can do that on stage. You can do it when you're in drag. But I'm also glad that you have the ability to talk about it today. You didn't need to get into drag to have this conversation today. But maybe getting in drag would make it more palatable to someone who has trouble with the hard conversations and needs some entertainment as part of it. There are just different ways to reach people. And I'm just glad that you're able to talk about it. It's very exciting. Again, this has given me hope. And with that in mind, I would love you to also give us your Top Three Tips. I do a couple of Top Three lists, and I would love to know what your Top Three Tips would be for someone who … maybe they've been diagnosed with HIV; maybe they don't know enough and are learning more; maybe they're like you when you were 16 and being the School Samantha. What would your Top Three Tips be for someone who is living with invisible illness, who's going through this journey just like we are?

Jahlove: My top three would be … first, it’s okay not to be okay! It's gonna be okay. One of my good friends told me that healing is a journey, not a destination.

Lauren: Beautiful. I love that.

Jahlove: Right? Think about that!

Lauren: I’ll get that tattooed on my forehead!

Jahlove: Healing is a journey, not a destination. So, first:  It's okay not to be okay. My second tip would be: Get all the information and research that you can about your illness. Because the more you know, the better it will be for you to understand what's happening in your body, to explain to other people, to help build communities and resources to rally around. I can't express, the more that you know, the better. Because I felt so great that I was able to have all conversations. And then my third is: Don't lose you.

You are not your diagnosis. It's just added to the story of a chapter in your life.

It doesn't define you, doesn't have to make you or break you. A diagnosis is just that.

Lauren: You're making the hairs on the back of my neck stand up with all three of those tips. Beautiful. One other Top Three list, and this one. I think you'll have fun with this: Top Three Things that give you unbridled joy. You've had to make some lifestyle changes because of your diagnosis, because of your treatment plan. What are you completely unwilling to compromise on that gives you joy? This can be guilty pleasures, secret indulgences, comfort activities. It can also just be the things that you turn to when you need a dose of positivity. What do you look for?

Jahlove: Sleep! Sleep! Because that's when your body, your mind … everything is literally resting. And really listening to your body. COVID really has slowed a lot of us down. 

Lauren: Which has been positive for a lot of us. 

Jahlove: It has been positive. So, sleep. Getting my toes and nails done. My manicure and pedicure. It's been rough the past few months, but I got them done now!

Lauren: And your nails look awesome.

Jahlove: Thank you! It’s about pampering yourself, right? It's about giving yourself treats and saying that you deserve this — and believe that you deserve it. Get your toes and nails done.

Because I know when I look good, I feel good!

Lauren: Yes, absolutely. Yeah, that's so true. It starts sometimes from the outside in.

Jahlove: People separate beauty and health. But there's a great connection; it's not about vanity when it comes to beauty — it really does aid people’s health.

Lauren: And we only really see those services, those kinds of beauty support services in wellness, in cancer patients, right? Like when cancer patients are given a free head shave, or they're given wigs, or they're given eyelashes, things like that. But what if we were able to see that among other chronic illnesses, like free manicures and things to make you feel beautiful? Absolutely.

Jahlove: I always say that my nail salon is like my therapist. You just go in and tell your business and then you leave. They’re giving you advice sometimes. I’m telling you, it’s a whole thing I’ve got going on.

Lauren: It's a whole experience. I really like where you're going with this, yes.

Jahlove: And then my third guilty pleasure is dancing!

Lauren: Yeah, you love it. It's who you are.

Jahlove: I can't live without it. I can't live without music. I just can't live without movement. Even when I travel; I love nightlife. I love clubs.

People travel to see the tourist attractions. I’m going to listen to what the local music is, who the local people are, the dances.

Looking for spaces or places where I can feel the most free. Where people are at a party, where they’re hearing music, and they’re just letting go. I say, I take my problems to the dance floor. I love those experiences. I’m, like, I don't want the party to end! So, going to as many different bars, and just dancing.

Lauren: I love that so much. What is your ask for listeners today? What can people tuning into this episode who've been touched by your story do to support you and your community in the continuing work that you do?

Jahlove: I ask that when you hear Black Lives Matter, that we're not talking that all lives don’t matter … we just need your voice, your resource, to amplify that what's happening with police brutality against the Black community is wrong. To show up, and understand that ally-ship goes a long way. And let's try to be ambassadors for change, And not ambassadors for chaos. When it comes to the HIV-positive community, have more empathy. Understand that your sexual health is your sole responsibility, and not the responsibility of the HIV-positive community or any other sexual community. It is your sole responsibility. For me? Just be better human beings. That's all I ask of anybody. Be a better human being to yourself. You’ve got to love on yourself, too. Because when you love on yourself, you know how it shows up; you start building a language for it, and you can receive it — and also reciprocate. 

Lauren: So what's next in your advocacy and wellness journey? Is it a possible run for a local seat?

Jahlove: Possible run for a local seat. I see me performing internationally as often as I can; I have been performing internationally. I see me educating and navigating the next wave of advocates, and I also want to make sure that I'm making the room for the next set of advocates. Because it's always the generation after us …

Lauren: The next generation carries the torch?

Jahlove: Yes, the next generation carries the torch. But I also have to be willing to able to hand that over. To hand these guys tools and say, “However you want to do it, here, this is yours.” And I see me doing that on a global scale, helping people find their voice and do their advocacy.

Lauren: Jahlove, you are a total delight. And it has been such an honor to speak to you today. For those of you wondering, Jahlove has a very stable roof over his head now. This is a story of redemption for you. You've built a new life and a new home for yourself. And I commend you on your inner strength and resilience, and your ability to share what you're learning with the world. It's a beautiful and inclusive thing. And what a lesson in how to spread love and joy. So Jahlove, thank you so much, especially at this moment in time, for giving us your time, your energy, your presence, and your thoughts on how we can all be better people. And thank you for finding the better version of yourself and sharing it with the world.

Jahlove: Oh, you just gave me goosebumps. Lauren. Because you never know … all the things that I've been through in my early years of life truly did prepare me for all these moments in time. And at times I was questioning why I was going through it. I don't question them now.

Lauren: You’ve made peace with it. And you're in a better place. These things had to happen for you to be who you are today — which is an amazing, exuberant, vivacious, man who is full of life.

Jahlove: Yes, thank you. Thank you for this opportunity!

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