A musician and educator reflects on his journey

“You have to earn my story. I don’t owe you my story,” says Phillip Lambert, 34. Trust requires openness and work on both sides, he says. As a person living with HIV, he has been working hard to be open, and to show what life can be like on the other side of an HIV diagnosis.

Where are you from?

I’m actually from Chicago and will rep my city for life. Born and raised on the deep dirty South Side of Chicago, 93rd Street, affectionately called the Nine Tre. 

Describe your experience as an HIV advocate.

I have been working in HIV prevention since 2004. I started as a sexual health peer educator in undergrad. When I was younger, I loved to play devil's advocate, and that natural interest led me to educating in that space. After undergrad, I moved into HIV research at one of the leading LGBTQ+ health organizations. From there, I became an Outreach Worker, an HIV prevention program manager, and then a digital education ambassador for the CDC. People always thought I was positive because of how literate I was about transmission and history. I didn’t mind, but it bothered me that only people living with HIV are supposed to be knowledgeable about it, like it is positive people's job to do the labor for the entire world, and for me that’s a hard no.

What got you interested in HIV advocacy and prevention?

I didn't have anyone to talk to me about it. No one that I knew had the information either. I would read books and search in chat rooms looking for information about sex. Sex education should not be trial and error. I bought several whitewashed sexual health books at Borders when I was 15 and shared them with my friends. I think that was truly my first step towards my work in sex education because I went out and got that knowledge and then brought it back to my community. I was just 15.

At the end of 2007 through the first part of 2008, I lived in Cape Town, South Africa where I worked exclusively with children with one or both parents who had died of HIV. These were kids who were now living in orphanages, many of whom were unaware of their own HIV status. Although my undergraduate degree was in advertising, this experience led me to pursue my first job in HIV prevention research.

What drives your interest in working with youth?

I’ve always loved kids. From a very young age, I knew I was queer and was in tune with that queerness. I knew that the typical idea of what a nuclear family is was not in my future and would not look the same for me. I was always drawn to working with kids and supporting them in being their whole selves without judgment. I was the go-to babysitter and nanny as a teen, but when I lost my mom at 16 to lung cancer and didn’t have my dad to rely on because my entire life, leading up to that moment, he had struggled with a heroin addiction, it changed my relationship to my peers. It forced me to gain an even deeper awareness and understanding of youth. I was fortunate to have an extended family take care of me, but my chosen family was where home truly was. It's where I flourished and it is what continues to sustain me. Biological family is what got me here; chosen family is what kept me here.

How did you learn you were living with HIV? How did you feel?

Life kept throwing me curveballs. After working for some of the leading HIV research institutions for over 10 years, I contracted HIV. In the summer of 2015, I was hospitalized for a blood disorder that causes me to have blood clots. They suggested that I get an HIV test which at first I declined because I had just recently received an STI test two weeks prior and all of my test results had come back negative. After staying in the hospital for 10 days, my doctors decided to run an HIV test again to confirm that I was negative. I agreed and was sure I had nothing to worry about. Moments before I was discharged, a doctor came into the room and told me that I had tested positive. I was in a state of shock because I had just had a negative test result. I thought, “How could I have allowed this to happen to me?” The internalized stigma was too real. When the stigma directly affects you, it hits differently. Instantly, I blamed myself even though it wasn’t my fault. I went to see an Infectious Disease Specialist two days later and started my regimen immediately but also felt extremely ashamed and embarrassed. I went through a deep depression, failed out of the last year of my PhD, and I gained weight until I weighed nearly 700 pounds. In retrospect, it was the music and chosen family that saved my life. I want the people who read this, the people who are positive, to know that you have nothing to be ashamed of, that you are just as worthy as anyone else of living a full and rich life. 

What was your “coming out” process like—to yourself and disclosing to others that you have HIV? 

At first, I was just so shocked and embarrassed to learn of my diagnosis that I didn't talk about it at all with anyone except for a handful of people I trusted. Then, after a year, I decided to write a status on Facebook about my diagnosis. That was my way of coming out to friends and close family in a way that didn't feel so pressured to me. The post was simple: In honor of World AIDS Day, I challenge everyone to get tested & know your status; because knowing is not only beautiful but also self-care and self-preservation. As a person who has been living with HIV for the last year, know that adherence can at times be difficult but so worth it. SILENCE = DEATH and ain’t nobody got time for that. I posted that in 2016.

I was still so depressed and immobilized by my depression. I thought often about my PhD program and was trying to find a way to reconnect with myself, to have some sense of normalcy. I was learning to grieve the death of who I was before my diagnosis. I connected with a friend and we decided to use music and writing as a form of therapy and as a way to practice disclosing, but it was so much bigger than that. From that, I wrote music that was defined both by advocacy and a form of reclamation of my own identity as a person and as a sexual being. The music was healing, provocative, sex-positive, and a banger. I used music to come out to myself. I also used music to announce myself as a person living with HIV. For the last few years, I've been working as an educator and previously had been a full-time nanny. None of these people will be aware of my status until they read this story. I hate feeling that I'm compelled to share every part of my personal story with anyone when they haven't done any work to earn that trust. You have to earn my story. I don’t owe you my story. I realize that my story doesn't have to be perfect to be shared. I don't know who needs to hear this, but I'm hoping that by being open and sharing my experiences of living with HIV I can help someone else who doesn’t know that there is happiness on the other side of a diagnosis. That there is joy that comes in the morning, but that that joy will not be easy. The journey comes with hard work and deep healing and only you can decide when and what that looks like for you. Some days, I don’t feel like taking my medicine. I mean I do, but I want to be and feel without having to worry about taking my medicine every day. I think it’s important to be honest about that. I think it’s important not to oversimplify or try to put a positive spin on our experiences as people living with HIV. 

Talk about your art. Do you incorporate living with HIV? 

Nina Simone once said, “An artist's duty, as far as I'm concerned, is to reflect the times,” and that is exactly what I have chosen to do.

In 2015, I started using music to come out to myself. Getting a positive diagnosis pushed me into a depression that I couldn’t seem to get out of. At times, I felt suicidal. I was immobilized and drowning emotionally. I was homeless. Some days, I couldn’t move for days and weeks on end. It’s very important to me to emphasize here how much of a struggle it is to access mental health services when you are Black, living with a chronic disability, and housing insecure. Not all therapists can understand those intersections and when you are poor, Black, and queer, it makes access to these services even more of a challenge. One of my friends who would visit me often (an up-and-coming music producer) encouraged me to look to music to express how I was feeling, to convey my state of being. That day, Protection was born. Protection is a work that chronicles the night that I was infected with HIV. It’s about the ways that I moved through my own cycles of grief and the path I took to reclaim my desirability. I worked on it for a whole three years and during that time sought out inspiration from Black artists that could help me to see the project through. I had Boys II Men’s Mama on repeat for all of 2015 until Rihanna blessed me with Anti in 2016. Anti was my HIV coping anthem for a year until Sza dropped CTRL in 2017. It gave a voice and validity to my feelings. At one time, I didn’t have my status publicly displayed on the apps. I would engage in chats and after disclosing my status, people would ghost me. There’s a line from SZA’s 2017 album where she says, Why you bother me, when you know you don’t want me. Those words made me feel powerful. Those words reminded me that those people’s rejection was not about me, but about them and the societal stigma surrounding HIV. In 2018, I released Protection into the world. For me, releasing that work signified relinquishing control from all the fear, shame, and stigma of my diagnosis and giving myself permission to be free and worthy.

My new EP, Shine, will be released in mid-November. I am in the early process of working on a book about my experience.

What has been your experience as a Black person living with HIV?

My experience living with HIV as a Black, fat person has been trying, to say the least. I have been working in HIV prevention. James Baldwin once said, To be a Negro in this country and to be relatively conscious is to be in a rage almost all the time —and in one’s work. Then let's add fat, or steropositivity, or disabled to the equation. It can literally send you over the edge. This wasn't something that I was able to understand until after I became positive and then all my intersecting identities really started to play out. So I have had to prioritize and center my joy and care while staying in the work for liberation because Black positive lives matter. Black fat lives matter. Black trans and non-binary lives matter. All Black lives matter and in the words of Fannie Lou Hamer, none of us can be free until all of us are free. Period.

Anything else you’d like to say?

To people living with HIV—you’re worthy, you’re whole, you’re desirable. Some people aren’t going to want to engage with you because of your status and that means they weren’t worthy of your time. Ah! [in Megan Thee Stallion voice] Getting to and staying undetectable is a lot of work, but taking it one day and one step at a time gets the job done. Always remember, you’re worthy regardless of if you fit into the U=U continuum or not.

To health care providers—healthcare is not a one-stop shop. Healthcare providers need to learn to take an individualized approach with every client. Not just nurses and nurse practitioners, but doctors, too. Doctors also need to invest in education that can help them to learn how to take anti-racist and anti-oppressive approaches to patient-centered care. Give the information anyway, 100% of the time.

To researchers and epidemiologists—Google Robert Rayford. He’s a Black teen from St. Louis who died from HIV in 1968 whose death and diagnosis was “discovered” in 1987. The first AIDS patients were covered by The New York Times in 1981. What would have been different if Robert’s case would have been the first declared? Also, hire racial equity and anti-oppression consultants and educators to teach you about how people at the intersections of Blackness, transness, youth, and homelessness are most impacted by HIV. Don’t just rely on your intentions. Learn and study.

To artists and creatives—art helps people connect with the messaging of prevention and advocacy because health literacy is often presented in ways that exclude and dilute the voices and lived experiences of Black and Brown people—especially queer, trans, and nonbinary people. This is where art comes in to make prevention and anti-stigma messaging stay with people. Make your art anyway. Do it for the messaging, not the validation or the white gaze. Your work is important.