What I want you to know about living with HIV
Life with HIV has changed a lot since the 1980s and 90s. What was once a death sentence has become a curable condition. Today, HIV-infected people can look ahead to the future.
Despite this, the stigma surrounding HIV has not disappeared. Misconceptions about how the virus spreads and who is at risk still abound.
Four people living with HIV share what they wish you knew about the reality of living with the virus.
I have been HIV positive for 34 years. It seems strange that I am talking about an older person with HIV because they did not expect me to live to be 30 years old. And now I am 60 years old.
I was infected in 1987, but I did not know this officially until 1989. There was a rumor that Asians didn’t get HIV, so I didn’t think I’d be positive.
I remember the doctor blurting out: “You’re HIV positive.”
I asked, “Am I going to die?” And he said, “You probably won’t live past thirty.” There was no treatment at the time. There was nothing. It was a completely different time.
I was the first in my small group of friends to test positive. It was challenging. My friends and I went to eat. I noticed that when I took something off the 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 around their kids. Not because you wanted to do something to them, but because they were afraid that their children would get HIV.
Things have changed a lot. People are usually much more sensitive and much nicer. We are right about many things. Treatment, access to health care, things like that. But there are many things we are still working on, such as gender and race.
And there are still many misconceptions. Some people think that HIV is over. Or they think HIV is a moral problem. It is not. Humans have been having sex since the dawn of time, and our young people need to be educated and given the tools they need to protect themselves.
I think one of the best things people can do for people 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 moment when my breath stopped.
As a public health professional, I have done a lot of health education and counseling for other black men living with HIV. I thought about their stories, their courage and how they got through their diagnosis. Although I was afraid, I felt blessed to have the shoulders of people I could stand on.
The support from my friends has been amazing, but it hasn’t always been an easy road. I have so much on my back. I’m young, black, gay, and HIV positive. And the world is full of many stigmas.
In the black community, HIV is even more stigmatized, which is propagated 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 become infected with HIV. We are all at risk, so we need to talk about it.
Another misconception is that people with HIV are promiscuous. We are seen as sexual deviants. It is a label that many of us must carry and embrace. But this is often not our lived experience.
I think a lot of people think that you can tell if someone has HIV, but we don’t live in a time where people with HIV die anymore. Thanks to advances in biomedical research, people like me are living longer. There are people in their 50s, 60s and 70s who have HIV.
Then there are relationship problems. People living with HIV may think, “No one will love me” or “I have to date people with HIV to find love.” I’m undetectable, which means I have a low viral load, which means I can’t pass HIV to you.
The treatment works. Pre-exposure prophylaxis, or PrEP, a drug used to prevent HIV, works. I’ve dated people on PrEP and had sex on PrEP. They maintained their HIV-negative status.
My work with my organization, He is Value Inc., grew out of my HIV diagnosis. Our mission is to identify, affirm, 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 and human rights issue. If we all work together, we can really eliminate this thing. We all have a role to play in ending this.
I was sick a lot in 2016. I had a virus that wouldn’t go away. I was surfing and thought I might have acquired a parasite from the water. I was constantly sick for 6 weeks. My body ached. I went to several doctors and they told me, “It’s a virus. Take ibuprofen and you’ll be better.”
But I didn’t get better. I started getting fevers and night sweats. I thought, “Something is wrong.”
Finally, I had a blood test and the doctor told me, “I tested positive for HIV antibodies.” I said, “What? How is that possible?” HIV was nowhere near what I thought was wrong with me.
What I didn’t know was that I actually had AIDS. I went to the emergency room and tested positive for pneumonia.
When I was first diagnosed, I remember feeling like a dirty person. It’s a label they put on me. There was an assumption that it was my fault. I obviously did something wrong to get HIV and I should have known better. People thought I had sex with many people to get HIV without hearing my story. But in reality, I was in a committed relationship with a man I loved.
One of the things I’ve learned over the years as an advocate is that women mainly get HIV from bisexual men or people who share needles while using drugs. I got 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 other misconceptions.
When I was diagnosed, I knew nothing about HIV. I thought my life was over. But my doctor said it was very treatable. And it was. The drug basically prevents the virus from multiplying. About 2 months after starting 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 that having HIV means I’m full of virus like a flashing red light – the HIV lady! But if you tested today, you wouldn’t find it. I have been invisible for 5 years. My immune system is in the same state as it was before my HIV infection. I really don’t feel any different than before.
I tested positive in 2009. At the time, I was volunteering at the San Francisco Gay and Lesbian Center and involved in HIV prevention. There were rapid HIV tests available, so I just grabbed one and did it on myself. When it was finished, my co-worker said to me, “You know what those two lines mean.” And I said, “Yes. I am HIV positive and I know what to do. Do not worry. I will get over this.”
I’m taking medicine now. And as long as I take it daily, I’m healthy.
The hardest part of my life with HIV was dating. I’ve had people who, when I told them I’m HIV-positive, rejected me or said, “I don’t want to hang out with you. I’m not comfortable dating someone who’s HIV-positive.” That was hard to hear. There is much more to an angel than this one thing.
I know the virus is dormant because the medicine I take suppresses it. I don’t create enough viruses to pass on to someone else. Still, I’ve made it a routine to meet someone before we even go out for coffee and tell them, “I’m HIV-positive and undetectable. You can say no now or yes. .” Nowadays, I don’t find many people who say “I’m going to leave”. But they are still out there.
We have come a long way, but we still have a long way to go. There is still a lot of fear around HIV today. Can people die from it? Yes. But people can also die from diabetes and other diseases. If we take care of ourselves, everything will be fine.
If I wasn’t HIV positive, I don’t think I would be here at the San Francisco AIDS Foundation, working with and understanding our 50+ members. It opened my eyes and helped me understand the clients I work with. I have reached a point in my life where I accept my HIV infection and love myself. It’s part of who I am.