There are more than 1.2 million people in the United States living with HIV. While the rate of new HIV diagnoses has been falling steadily over the last decade, it remains critical that we keep talking about it—particularly given the fact that one in eight people who have HIV don’t even know it.
These are the stories of three people who are using their experiences being diagnosed with HIV to encourage people to get tested, share their stories, or find out what options are best for them.
“When I walked into the room, the first thing I noticed was that these people didn’t look like me,” says Chelsea White, recalling her first group session with other HIV-positive patients. “They looked like what I thought HIV was—people in recovery from IV drug use, street walkers, gay men. They didn’t look like me, a young, vibrant, educated woman.”
Chelsea, a 30-year-old youth program manager from North Carolina, tested positive for HIV when she was 20 years old and a senior in college. After being in a monogamous relationship through her high school and college years and testing negative multiple times throughout the relationship, Chelsea and her boyfriend both tested positive.
But that wasn’t where the news ended: Chelsea was pregnant, too. “The doctor told me he thought it was a false positive and not to worry.” When the baby was born, Chelsea was tested again. She was positive, but the baby was negative. As it turns out, her boyfriend was infected during sexual contact with another person. He then infected Chelsea.
That was 10 years ago. Today Chelsea is married to an HIV-positive man she met after she was diagnosed and they have two children together—both of whom are HIV-negative.
Because of her experience finding out at such a young age and feeling alone, Chelsea now runs an HIV/AIDS adolescent outreach program. Each week, she sits with HIV-positive teens and twenty-somethings, counseling them on their options, both medical and personal, the same tough decisions she had to make.
Chelsea herself is not currently taking any medications to treat her HIV. “I took medicine while I was pregnant each time, but I just felt like I wasn’t ready to be as compliant as I should be,” she says. “However, in the last few months I’ve decided it’s time I start looking at my medicine options.” That’s a message she stresses to her clients, too. “I encourage people to get themselves ready for the commitment, but I also stress that if they’re not ready, they’ll do more damage to their body in the long run than they would if they just wait.”
Nicholas Snow, 52, had maintained regular HIV tests his entire adult life and always practiced safe sex. Then, one day, he had a “slip” in his safe sex practices. A few weeks later, Nicholas began experiencing severe flu-like symptoms, a common sign of an early HIV infection. Five months after that, he had his diagnosis: HIV.
At the time of his diagnosis, Nicholas, a journalist, was living in Thailand. He has since returned to the U.S. and lives in Palm Springs, California. He’s become a patient at the Desert AIDS Project, a medical clinic devoted entirely to the treatment and management of HIV/AIDS.
Nicholas cites a common problem in the gay community as a reason for HIV spreading the way it does, “People describe themselves as drug- and disease-free, but they’re fooling themselves because so many people who have HIV don’t know they have it,” he says. “Then people are deciding to have unsafe sex based on conversations like this and so many people become positive as a result.”
That’s why Nicholas encourages regular testing. “There are two ways of knowing a person has HIV—they get tested or they get sick,” he says. “If someone waits until they’ve had HIV long enough that their immune system has deteriorated, they’ve missed a tremendous amount of time and opportunity to avoid that.”
Nicholas takes medicine daily—one pill, once a day. And it’s working. “Within two months of beginning this medicine, my viral load became undetectable.” Nicholas eats well and exercises often, and besides an issue with his cholesterol level (a common side effect of HIV medicine), he’s in great health.
Being very open about his diagnosis, Nicholas has written and produced a music video that he hopes encourages people to be tested regularly. He also hosts an online radio show that discusses, among other things, living with HIV. “I live my truth openly and honestly,” he says. “I don’t waste any time or energy hiding this part of my reality.”
“I’m still Josh. Yes, I’m living with HIV, but I’m still the exact same person.” That awareness is what led Josh Robbins, a 30-year-old talent agent in Nashville, Tennessee, to tell his family about his diagnosis within 24 hours of finding out he was HIV-positive. “The only way that my family would be OK would be for me to tell them face to face, for them to see me and touch me and look in my eyes and see that I’m still exactly the same person.”
The night Josh received word from his doctor that his flu-like symptoms had been the result of an HIV infection, Josh was home, telling his family about his newly diagnosed immune disorder. The next day, he called the man who infected him to tell him of his diagnosis. “I figured he obviously didn’t know, and I made the decision to contact him before the health department could. That was an interesting call, to say the least.”
Josh has been HIV-positive for only a year, and he’s not taking medicine yet. “I’ve made the decision in the past year that being undetectable [having an undetectable viral load] is less important to me than feeling like my body is handling things at the moment,” he says.
Once his family knew, Josh was determined to not keep his diagnosis a secret. “Hiding wasn’t for me. I thought the only way to combat stigma or prevent gossip was to tell my story first. So I started a blog.” His blog, Imstilljosh.com, allows Josh to tell his story, share his experience with others, and connect with people like him, something he had a hard time with in the beginning.
“I had never had one person tell me that they were HIV-positive before I was diagnosed. I didn’t know anybody, and I felt kind of lonely. Plus, I was scared, terrified even, for my health.” Since launching his blog, he’s had thousands of people reach out to him, almost 200 of them from his region of the country alone.
“I’m not lonely at all now. It’s a huge honor and very humbling that somebody would choose to share their story via an e-mail just because they felt some sort of connection because I made the decision to tell my story on my blog.”