life with HIV has changed a lot since the 1980s and 1990s. What was once a death sentence has become a treatable disease. Today people with HIV can project into the future.
Yet the stigma surrounding HIV has not gone away. Misconceptions about how the virus spreads and who is at risk still abound.
Four people living with HIV share what they want you to know about the realities of living with the virus.
I have been HIV positive for 34 years. It seems weird to talk about being an HIV-positive elderly person because I wasn’t expected to live to be 30. And now I’m 60.
I was infected in 1987 but didn’t officially know until I was tested in 1989. There was a rumor going around that Asians don’t get HIV so I didn’t think I was going to be HIV positive.
I remember the doctor blurting out, “You are HIV positive.
I asked, “Am I going to die?” And she said, “You probably won’t live to be 30.” There was no treatment at the time. There was nothing. It was a totally different time.
I was the first of my small group of friends to test positive. It was hard. My friends and I used to go out for meals. I noticed that if I took something from a plate, no one ate after me. If I smoked a cigarette, no one smoked after me. If you were gay, people didn’t want you to be with their kids. Not because you were going to do anything to them, but because they were afraid their children would get HIV.
Things have changed a lot. For the most part, people tend to be a lot more sensitive and a lot kinder. There are many things that we have done well. treatment, access to health care, this kind of things. But there are a lot of things we are still working on, like gender and race issues.
And there are still a lot of misconceptions. Some people think HIV is over. Or they think HIV is a moral issue. It’s not. people had sex since the dawn of time, and our young people must be educated and given the tools they need to protect themselves.
I think one of the best things people can do for someone living with HIV is to listen. Be empathetic, but don’t try to save them. We are not a project. And if you can’t listen, write a check. Support organizations that help people living with HIV.
I was diagnosed in June 2015. It was shocking. There was a time when I stopped breathing.
As a public health professional, I did a lot of health education and advice for other black men living with HIV. I thought about their stories, their courage and how they overcame their diagnosis. Even though I was scared, I felt blessed by the shoulders of everyone I could stand on.
The support from my friends has been 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 further 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 it’s a gay disease, but HIV affects everyone. Anyone in the world can get HIV. We are all at risk, so we should talk about it.
Another misconception is that people living with HIV are promiscuous. We are considered sexual deviants. It’s a label that many of us have to wear and internalize. But this is often not our lived experience.
I think a lot of people believe you can tell when someone has HIV, but we no longer live in a time when people with HIV are dying. Thanks to advances in biomedical research, people like me are living longer. There are people in their 50s, 60s and 60s who are living with HIV.
Then there are relationship issues. HIV-positive people may be in the spirit of “Nobody’s going to like me” or “I’m going to have to date HIV-positive people to find to like.” I am undetectable, which means my viral load is low, which means I cannot transmit HIV to you.
The treatment is working. Pre-exposure prophylaxis, or Preparation, the medicine people take to prevent HIV, works. I have dated people on PrEP and had sex with people on PrEP. They 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, empower and celebrate the worth of gay 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 take this thing down. We all have a role to play in ending this.
In 2016, I often fell ill. I had this virus that wouldn’t go away. I was surfing, and I thought maybe I had a parasite of water. Over a period of 6 weeks I had a constant faintness. My body was hurting me. I went to several doctors and they said, “It’s viral. Take ibuprofen and you’ll feel better.”
But I was no better. I started running fevers and having night sweats. I thought, “Something’s wrong.”
Finally I got a blood test and the doctor said to me, “You have 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 this bad person. It’s a label stuck on me. There was this assumption that it was my fault. I obviously did something wrong to get HIV, and I should have known. People assumed that I had to have sex with a lot 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 have learned through my advocacy work over the years is that women contract HIV primarily from men who are bisexual or who share needles while using drugs. I had gotten it from an ex-boyfriend who had a history of drug use. I started my YouTube channel and Instagram page to correct these misconceptions and many more that exist.
I didn’t know anything about HIV when I was diagnosed. I assumed my life was over. But my doctor told me it’s very manageable. And it was. The drug essentially stops the virus from replicating. About 2 months after starting treatment, my viral load went from 507,000 particles in a drop of blood to 35 particles. My pneumonia disappeared and I started surfing again.
People think having HIV means I’m full of the virus, like a flashing red light – the HIV lady! But if you tested me today, you wouldn’t find it. I’ve been undetectable for 5 years. My immune system is in the same condition as before I had HIV. Really, I don’t feel any different from before.
I tested positive in 2009. At the time, I was volunteering for the Gay and Lesbian Center in San Francisco, and had been involved in HIV prevention. We had quickly HIV tests available, so I just grabbed one and did it on my own. When it was ready, my colleague said to me, “You know what those two lines mean.” And I thought, “Yeah. I’m HIV-positive and I know what to do. Don’t worry. I’m going to be okay.
I’m on it medication NOW. And as long as I take it daily, I’m healthy.
The hardest part for me of living with HIV was dating someone. 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 am not comfortable dating someone who is HIV positive. It was hard to hear. There’s so much more to Angel than that one thing.
I know the virus is dormant because the medications I take suppress it. I don’t create enough viruses to pass it on to someone else. However, I have made it a routine that if I meet someone, even before leaving coffee meeting, I tell them, “I’m HIV-positive and I’m undetectable. You can say no now, or you can say yes. These days, I don’t get as many people saying, “I’m going to make it.” But they are still there.
We have come a long way, but we still have a long way to go. Even today there is 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, everything will 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+ members and being able to understand them. He opened my eyes and helped me understand the clients I work with. I have reached a point in my life where I just accept my HIV and love myself. It’s part of who I am.