Life with HIV has changed a lot since the 1980s and ‘90s. What was once a death sentence has become a treatable condition. Today, people with HIV can look forward to the future.
Still, the stigma surrounding HIV hasn’t disappeared. Misconceptions about how the virus spreads and who is at risk still abound.
Four people with HIV share what they want you to know about the realities of living with the virus.
I’ve been HIV-positive for 34 years. It seems weird to talk about being an older person with HIV because I wasn’t expected to live to 30. And now I’m 60.
I was infected in 1987, but I didn’t find out officially until I was tested in 1989. There was a rumor going around that Asian people didn’t get HIV, so I didn’t think I was going to be positive.
I remember that the doctor blurted out, “You’re HIV positive.”
I asked, “Am I going to die?” And she said, “Most likely you won’t live to see 30.” There was no treatment at the time. There was nothing. It was a totally different time.
I was the first one in my little group of friends to test positive. It was challenging. My friends and I used to go out for meals. I noticed that if I took something off a plate, nobody ate after me. If I smoked a cigarette, nobody smoked after me. If you were gay, people didn’t want you to be around their children. Not because you were going to do something to them, but because they were afraid their kids might get HIV.
Things have changed a lot. For the most part, people tend to be much more sensitive and much more kind. There are a lot of things we got right. The treatment, access to health care, that kind of stuff. But there’s a lot of stuff we’re still working on, like issues related to gender and race.
And there are still a lot of misconceptions. Some people think HIV is done. Or they think HIV is a moral issue. It’s not. People have had sex since the beginning of time, and our young people should be educated and given the tools they need to protect themselves.
I think one of the best things people can do for someone with HIV is to listen. Be empathetic, but don’t try to rescue them. We’re not a project. And if you can’t listen, write a check. Support the organizations that help people with HIV.
I was diagnosed in June 2015. It was shocking. There was a moment when I stopped breathing.
Because I am a public health professional, I was doing a lot of health education and counseling for other Black men with HIV. I thought of their stories, their courage, and the way they’ve gotten through their diagnosis. Though I was scared, I felt blessed by all the people’s shoulders that I was able to stand on.
The support that poured out from my friends was amazing, but it hasn’t always been an easy journey. I already have so many things on my back. I’m young, I’m Black, I’m gay, and I have HIV. And the world is filled with so much stigma.
In the Black community, HIV is even more stigmatized, which is proliferated by the values of the Black church. Sex and sexuality are demonized. When you’re gay, your sexuality is even more demonized.
People think of this as a gay man’s disease, but HIV affects everybody. Everybody in the world can contract HIV. We’re all at risk, so we should be talking about it.
Another misconception is that people with HIV are promiscuous. We’re seen as sexual deviants. That’s a label that a lot of us have to carry and internalize. But that is often not our lived experience.
I think a lot of people believe that you can tell when someone has HIV, but we no longer live in a time when people with HIV are dying. Because of advances in biomedical research, people like me are living longer. There are people in their 50s, 60s, and 70s who are living with HIV.
Then there are the relationship issues. People with HIV may be in the headspace of, “No one’s going to love me,” or, “I’m going to have to date people with HIV to find love.” I’m undetectable, which means my viral load is low, which means I cannot pass HIV on to you.
Treatment works. Pre-exposure prophylaxis, or PrEP, the medicine people take to prevent HIV, works. I’ve dated people on PrEP and I’ve had sex with people on PrEP. They’ve maintained their HIV-negative status.
The work I do with my organization, He is Valuable Inc., grew out of my HIV diagnosis. Our mission is to identify, reinforce, and celebrate the value of queer Black men through anti-stigma campaigns and other programs.
I want people to know that HIV is a social justice issue and a human rights issue. If we all work together, we can really eliminate this thing. All of us have a role in ending this.
In 2016, I had been getting sick a lot. I had this virus that wouldn’t go away. I was surfing, and I thought maybe I’d gotten a parasite from the water. Over a 6-week period, I had constant malaise. My body was aching. I went to several doctors and they told me, “It’s viral. Take ibuprofen and you’ll feel better.”
But I didn’t get better. I started running fevers and having night sweats. I thought, “Something is wrong.”
Finally, I had a blood test and the doctor told me, “You tested positive for the HIV antibody.” I said, “What? How is that possible?” HIV wasn’t even close to what I thought was wrong with me.
What I didn’t know was that I actually had AIDS. I went to the ER and tested positive for pneumonia.
When I was first diagnosed, I remember feeling like I was this dirty person. It’s a label that was put on me. There was this assumption that it was my fault. I obviously did something wrong to get HIV, and I should have known better. People assumed that I must have been having sex with lots of people to get HIV, without even hearing my story. But in reality, I was in a committed relationship with a man I loved.
One thing I’ve learned through my advocacy work over the years is that women mainly get HIV from men who are bisexual or who share needles while using drugs. I’d gotten it from an ex-boyfriend who had a history of drug use. I started my YouTube channel and Instagram page to correct these and many of the other misconceptions that are out there.
I didn’t know anything about HIV when I was diagnosed. I assumed my life was over. But my doctor told me that it’s very manageable. And it has been. The medicine basically stops the virus from replicating. About 2 months after I went on treatment, my viral load dropped from 507,000 particles in a drop of blood to 35 particles. My pneumonia cleared up, and I started surfing again.
People think having HIV means I am full of the virus, like a flashing red light — the HIV lady! But if you tested me for it today, you wouldn’t find it. I’ve been undetectable for 5 years. My immune system is in the same shape as it was before I had HIV. Truly I don’t feel any different than I did before.
I tested positive in 2009. At the time I was doing volunteer work for the Gay and Lesbian Center in San Francisco, and I had been involved in HIV prevention. We had rapid HIV tests available, so I just grabbed one and I did it on myself. When it was ready, my co-worker told me, “You know what those two lines mean.” And I was like, “Yes. I’m HIV-positive, and I know what I need to do. Don’t worry. I’m going to get through this.”
I’m on medication now. And as long as I take it daily, I’m healthy.
The hardest part for me of living with HIV has been dating. I’ve had people who, when I told them I was HIV-positive, rejected me or said, “I don’t want to hang out with you. I’m not comfortable dating someone who is HIV-positive.” That was hard to hear. There is so much more about Angel than just that one thing.
I know that the virus is dormant because the medication I take suppresses it. I don’t create enough virus to be able to pass it to someone else. Still, I have made it a routine that if I meet someone, before we even go on a coffee date, I tell them, “I’m HIV positive and I’m undetectable. You can say no now, or you can say yes.” Nowadays, I don’t get as many people who say, “I’m going to pass.” But they’re still out there.
We have come very far, but we still have a long way to go. Even today, there’s a lot of fear around HIV. Can people die from it? Yes. But people can die from diabetes and other diseases, too. If we take care of ourselves, we’ll be fine.
If I weren’t HIV-positive, I don’t think I would be here at the San Francisco AIDS Foundation, working with our 50-plus members and being able to understand them. It has opened my eyes and helped me understand the clients I’m working with. I’ve reached a point in my life where I just accept my HIV and love myself. It’s part of who I am.