Stories - This is life with HIV

Herman's Story

Having lived with HIV for almost 25 years, Herman’s journey with the virus has seen many ups and downs, but he’s refused to let it damage his warmth or positive outlook on life.

For Herman, getting diagnosed with HIV didn’t change the way he saw himself, though he’ll admit there were moments where it almost did. “I was infected by someone who did it intentionally, to wound me,” he says. After it happened, Herman was told by a mutual friend that his romantic partner had intentionally not disclosed his HIV status and purposefully infected him. “He was jealous of my liveliness. He told our friend that he thought I was blissfully ignorant and wanted to bring me down a notch.”

Herman spent the first few days after receiving this news awash in anger. He went to get tested, but knew his results would be positive regardless. In the days that followed, he sat with his feelings of hurt and rage unsure how to carry on, but also not wanting to fall apart. “Ultimately, I decided to own it, and not let it degrade the person I am,” he says.

This positive outlook eventually played a role in how Herman and his husband met. One of the first things listed on his online dating profile was his status as HIV positive. When the two first began talking, Herman's husband asked why he disclosed his status. "I responded, ‘Why wouldn’t I be open about my status? Why would I want to date someone if they can’t accept who I am?’” This approach to life sparked a connection between the two, who have now been married for a number of years.

When asked what he’d want others to know about his experience with HIV, Herman is quick to focus on the ways his life has been enriched. “I’ve gained wisdom that couldn’t have come to me in any way other than my experience. If you can endure the ups and downs, there’s going to be greater love and clarity. HIV was a big part of that for me."

Lynn's Story

"I would encourage anybody, when you choose your special somebody, to get tested together. Openly talk about your history and get tested because neither the person that I was with or I discussed that. We didn’t think to.” Lynn and her husband had been married for five years before they were both diagnosed with HIV. Neither of them knew their status before receiving their diagnosis."

"We had reconnected after some years apart, and came from pretty wild backgrounds. He came from a background of drug use, and I came from a lifestyle of drinking. When we reconnected, we were both living Christian lifestyles and making healthier choices. We didn’t discuss our pasts,” Lynn says. A year into her marriage, she began feeling sick. After visits to several doctors, she couldn't get a conclusive answer to what was wrong. “My body was deteriorating, and no one knew why. I began to feel crazy,” she shares.

The catalyst for her diagnosis came when roughly five years into their marriage, her husband’s health began rapidly deteriorating. After going to the doctor to get checked out, his test results came back positive for HIV. “When he called me with the news, I knew immediately I had it too. I don't put the blame on anybody,” she shares. “I was in denial when it first happened because I'd look in the mirror and I just couldn't believe it.”

Lynn struggled with denial for a long time as she experienced rejection and isolation after others learned of her status, especially once she and her husband divorced and she tried dating again. “I looked at myself like a disease,” she says. “At first I never sought help for my mental health, and managed my physical health poorly. I didn’t know the resources available for dealing with an illness like this.” Things finally changed for Lynn when she found a doctor who made her feel heard. “He helped me understand the importance of taking my meds regularly, and helped me feel ready to seek help for my mental health. He saved my life,” she says.

Now when she reflects on her journey with HIV, Lynn stresses the importance of seeking mental health support. “I want people to know there is help available for our mental health. There’s hope, and for me personally, my hope came from my faith in Jesus. It was truly a grieving process I went through, but the help I got showed me that I’m not a disease. My status doesn’t define who I am."

Jonathan's Story

When Jonathan found out he was HIV-positive in early 2015, after his second relationship ever, it wasn't easy. "I was on suicide watch for a couple of weeks," he says. "I wasn't connected to resources and I didn't have a strong support system, which is so important. You have to have resources and a support system."

Over time, Jonathan found that speaking out was a way to take control of the situation. "After I was diagnosed with HIV, what helped me get past the fear was being an activist," he says. "It's not something you can really mentally prepare for—I mean, how do you prepare for that? But I realized I could have some power over the situation, and speaking out gave me autonomy."

When Jonathan came to terms with his status, he used his knowledge to help empower others. He even produced a TEDx presentation about living with HIV and is currently writing a book about the history of HIV in 21st century America.

His advice for those just diagnosed? Connect to resources. "That's my top priority," he says. "And know that you are still human. You are still worthy of friends. You are still worthy of sex. You are still worthy of love."

Jackie's Story

"Never take anything at face value." Jackie was in a relationship for several years when she was diagnosed with HIV. Today, she wishes everyone knew that HIV can impact anyone. "Myself and other ladies I know who were diagnosed with HIV were in long-term relationships at the time. But HIV doesn't discriminate. It can happen to anyone: women, married people, old, young."

Having lived with HIV for more than a decade, Jackie's journey took many twists and turns. It's a story of loss and frustration, but—ultimately—hope. "In the beginning, I hadn't accepted it myself," Jackie says. "But now I'm hands-on. The more I learn about HIV, read, and participate, the more it helps me do what I need to do to heal myself."

Jackie has seen treatment and stigma surrounding the virus come a long way. "The world we live in is nothing like the world was 20 years ago," she says. "We've made a lot of progress when it comes to HIV medication, and it's better than it used to be."

Her advice for those recently diagnosed with HIV is to put your own health first. "You have to be selfish, to an extent," she says. "You have to want to get well and do things to help yourself get well. All the strength that I had, I had to use it for myself."

And at the end of it all, Jackie still believes there is hope: for people living with HIV, and for a cure. "People diagnosed with HIV can find an opportunity to start over again. You can't go back, but you can go forward," she says. "I'm going to defeat this disease."

(Jackie has chosen to have her name and image changed for confidentiality.)

DeAndre's Story

DeAndre's advice for everyone (whether they're living with HIV or not) is pretty simple: "Get tested. Know your status. That is a legit thing."

When he was diagnosed with HIV, DeAndre says he was in a daze at first. "I didn't connect to my diagnosis emotionally," he says. "But because I was getting tested every three months beforehand, I didn't have a high viral load when I found out. So it only took two months to get to an undetectable viral load."

For DeAndre, prior education and knowledge about HIV helped him accept his diagnosis and take the steps necessary to prioritize his health. His volunteer experience at an STD clinic helped educate him on the human aspect of HIV and showed him the importance of testing. "I knew a lot [about HIV] beforehand, which made it easier," DeAndre says. "I knew people who were positive, and I knew the history, so it was easier for me to take in my diagnosis. It was still disappointing news, but it was good to have that knowledge beforehand."

The U=U (undetectable = untransmittable) concept is the key for DeAndre, though he says that his generation often doesn't know the facts about HIV. "Today, negative stigma around HIV is out there, but it's unrealistic," he says. "It takes a two-minute conversation for me to blow away any stigma of HIV."

DeAndre encourages everyone to get tested for HIV every three months and, if they are diagnosed, do what's necessary to get to an undetectable viral load. "No matter how you feel when you're diagnosed or how much of a shock it may or may not be, find out what the next steps are for you medically and take those steps," he advises. "HIV is so treatable. Get support, find out what you need to do, and do it. The way medicine is today, knowing is way better than living in fear."