Carlos: I was diagnosed HIV+ on July 21st, 2014. I would consider myself well-educated about HIV and I got tested regularly, about every 3 months, through years of active drug use and high risk behaviors. When I entered into recovery for my addiction, I became sexually abstinent and committed to my sobriety. I continued regular testing, mercifully with negative results. Then after about 9 months of sobriety I relapsed one night and had one sexual encounter involving injection drug use. That was in April of 2014. Three months later I tested positive
Kevin: I was diagnosed on April 1, 2014. I sometimes joke that I was waiting for the person who delivered the news to jump out of his seat and say, “April Fools!” I was a senior at the Naval Academy, and I tested positive after opting into some additional physical and medical screening to undergo training to qualify as a Navy Diver. The diagnosis meant I couldn’t go into the Navy. It was the darkest day of my life.
Glenn: I was diagnosed in 1991. I came out of a 13-year relationship. My ex told me, “I’ve met somebody, I’ve fallen in love, you and I are splitting, I’ve tested positive, so you’d better get tested.” And, of course, I was positive. Interesting – when you asked me to do this, I reacted the way I did in 1991. I got really paranoid about who was going to find out. I didn’t tell anyone at first. Four years later I told my kids and my family, and that was it. I didn’t want to get fired from my job. I had to do some self-talk to even be here tonight.
David: I was diagnosed in 1998. My partner at the time got ridiculously ill and I told him he had to go see a doctor. So we dragged him to my doc, and he came out and said “Can you get him to the hospital in 15 minutes? Or else, I’m calling an ambulance.” At the hospital, the doctors came in after two hours and said to him, “You’ve got full-blown AIDS.” The chances of me not being positive were nil. He was close to dying. About one week later, I got my own positive test results. And 1998 is just when the retroviral combos were coming out, and I thought, “I probably have 10 more years to live, and that’ll be it.” Knock on wood – I’m still around.
JOSH: DAVID AND GLENN, I’D LIKE TO TALK TO THE TWO OF YOU ABOUT FEAR. WHAT TERRIFIED YOU THE MOST WHEN YOU WERE DIAGNOSED?
Glenn: I was terrified that anybody would find out. I told my kids and my family and a few close friends, and that was it. I didn’t tell anybody else until 2016, when TCGMC did Two Boys Kissing. I did a 3-minute share with the chorus. The music talks about those left behind after so many dying. I was one of them. Anybody in my generation still reacts like it’s a death sentence. Up until now… it doesn’t affect my day-to-day life, except for the handful of pills I take. I don’t think about it. But when you brought it up, it’s like, “Oh my god, it’s going to go out to the world! Everybody’s going to know! And then I thought, “So what?” It became a trust issue with you, Josh, as well, “Are you HIV positive?” and I know you’re not. “Can you even write this?” It was really interesting to feel that, and to work through that process.
David: But it is amazing how we internalize this stuff. Gerald asked for text submissions for Stigmata. I did not want to write anything for a couple of reasons. One, I don’t feel stigmatized. I do feel sometimes I stigmatize myself, but rarely do people say things. And I’ve been reasonably out about being positive, but my kids don’t know. I’ve never said it to them. I don’t want them to worry about me. As long as I’m in good health, I don’t want to muck it up.
JOSH: CAN YOU TELL ME MORE ABOUT SELF-STIGMATIZATION?
David: When I go to communion at church. We drink out of a common cup. Do I want to tell people behind me, “Hey, I’m positive!” Those things creep up. When you’re going to have sex with someone, it’s, “By the way, you need to know I’m positive.” Anyway, Gerald used what I submitted, and I’m really honored. It’s “15 Minutes” in Stigmata. At that time, it was like “I’m not going to see my son graduate. I’m not going to walk my daughter down the aisle. There are things in life that will not be mine.” But the decision I made very early on was “Screw this! I’m not going to let this disease define me.”
Kevin: In regard to a stigma, from a younger generation, where being diagnosed is not a death sentence … I thought to myself, “You’re so stupid. You had so much more information than people in the 80s and 90s had.” I’d love to get back to this idea – that the method of transmission doesn’t make anyone more or less deserving of being HIV-positive.
Glenn: But it’s blaming the victim – blaming yourself.
Kevin: Right. I think I want us to come to the point where culturally, when we have these conversations of disclosure, whether on a date or with a friend, the question “How’d it happen?” is no longer viewed as an in-bounds question. It feels intrusive, because you’re already putting yourself in a vulnerable place, and you don’t want to also be asked to revisit such a painful time. People who are receiving that disclosure need to put themselves in the vulnerable place where the person disclosing their status is likely in.
On people finding out about my status, I also was terrified of that. The fact that I wasn’t going to be commissioning, out of maybe 6 people in my class of about 1100 – that was very rare. I had to say something to my friends, my classmates, my extended family… I told my immediate family. But I didn’t want everyone to know, so I told most people I had been diagnosed with a rare blood disorder. That’s why it took until 2018 for me to decide to pursue legal action to change the policy and hopefully commission as an officer in the Navy.
David: Nothing like a baby step in front of 1,100 people!
JOSH: I KNOW THAT WITH YOUR STORY CARLOS, YOU TOLD A NUMBER OF PEOPLE IMMEDIATELY IN THE CHORUS. WE HAVEN’T YET TALKED ABOUT THE LOVING SUPPORT YOU RECEIVED FROM THEM, IN THIS MORE PRIVILEGED TIME.
Carlos: I did receive a lot of support, and I also experienced some stigma. Someone I know in the chorus, who is positive, recently said “I hate that people assume I’m positive because I used to do drugs but I didn’t do drugs.” That struck me because I think an important part of my story is that I associate my diagnosis with my IV drug use.
JOSH: STIGMATIZING THE STIGMATIZED.
Carlos: Exactly. I’ve heard some people who say that when sharing their diagnosis they have to clarify how, as if some means of transmission are more socially acceptable than others.
Glenn: And again, that’s blaming the victim! In the old newspapers they used to say, “He got it by a blood transfusion.”
Kevin: again, tying the method of transmission to one’s worthiness as a person further stigmatizes the disease, and doesn’t get us closer to ending HIV.
Carlos: I completely agree. And for that reason, I have to talk about it. I don’t want to feel shame about my HIV diagnosis or my drug use, and it’s something I feel like I have to share. When I was diagnosed, I remember sitting in the room in shock. After all this experience, all this high-risk behavior – sharing needles, multiple sexual partners – I had managed to stay HIV negative. But after one isolated event, one relapse, I ended up with a positive diagnosis. Through my addiction I had developed a bit of an invincibility complex. That all changed the day I was diagnosed HIV positive. I remember sitting in that room thinking “I always knew this was a possibility, but I never thought it would happen to me.” And all it takes is one time. It could happen to anyone.