Leave Your Problems on the Dancefloor: A Four-Year Journey from Diagnosis to HIV Care

Content From: Richard Wolitski, Ph.D., Director, Office of HIV/AIDS and Infectious Disease Policy, U.S. Department of Health and Human ServicesPublished: August 03, 20178 min read


provider and pt discussing treatment
Photo Disclaimer

Part of the PostTest Series

Recently, I wrote about some of the ways my own life changed after I was diagnosed with HIV. This week, I want to talk about the experience of a friend of mine in DC. He was diagnosed with HIV four years ago but only recently started getting HIV care and treatment. I had no idea for almost a year into our friendship that he was HIV-positive. We had talked about HIV and my status on multiple occasions before he confided in me.

As we talked about some of the things that caused him to delay getting treatment, I was deeply moved and asked him if might be willing to share his story. He agreed, as long as he could do so anonymously. This is his story, and it’s one he hasn’t shared with many people. When I completed the draft, he reviewed it, made corrections, and expressed hope that it might help others. I offer it with the same hope.

My friend and I share a fun obsession with watching “Ru Paul’s Drag Race.” We started getting together to watch the show, laughing and trading notes about the show. My friend has dealt with a lot more hardship in his life than I have, but despite it all he is able to find joy in the simple things in life, like this show. That characteristic, along with his passion for house music (and the community, dancing, and events that exist around it), remind me of myself at the same age, when I found a place where I belonged by volunteering and working in HIV testing and prevention.

Not too long ago, I didn’t hear from him for a few weeks, and I wondered what was going on. When we finally talked, he told me he had been keeping more to himself because he was dealing with health issues. He mentioned recurring fevers, night sweats, fatigue, and other symptoms that sounded to me like signs of advancing HIV disease. When I asked him whether he had been tested for HIV, he told me that he had been diagnosed about 4 years ago, at age 25. This was something that he had not felt comfortable telling me before.

I learned that when my friend was first diagnosed, the process started off the way it was supposed to. He was linked to care and filled his first prescription for HIV treatment in fewer than 30 days.

But even though he was off to what seemed like a good start, he never took a single dose of his HIV medications, and he stopped seeing his HIV care provider after those initial visits. This wasn’t because he was ignorant or foolish—but because, at that time, he felt he didn’t have anything to live for.

My friend told me he believed that things he experienced as a child contributed to his becoming infected with HIV, as well as to his decisions not to take his HIV medications and to drop out of care. He grew up in a chaotic, abusive family that also struggled to make ends meet. His father also struggled with substance abuse, and would disappear without warning. Worst of all, his father sexually abused my friend and used threats to keep him from telling anyone. My friend kept his father’s abuse secret for many years, and it caused psychological pain and anxiety that still persists.

Those experiences also made it hard for him to deal with the stresses of life, to trust people, and to open up to them. Quite frankly, he didn’t see any reason to live past his 30th birthday. He felt ashamed about having HIV, and he saw it as a personal failure for which others would judge him. He hadn’t wanted to get HIV, but now he saw the virus as his ticket out of a life that had already been incredibly hard in so many ways.

In short, he didn’t care about living. He saw himself as someone whose life was filled with pain, failure, and dreams that were never going to come true. He didn’t believe he had anything going for him. He had never had much in terms of money or material possessions. Even though he was working, he didn’t have health insurance. He didn’t expect anyone would help him if he was in pain—so, as he did when he was a child, he kept his pain to himself. He turned inward to console himself after his HIV diagnosis, and tried to keep it secret from as many people as possible. He didn’t ask anyone for help because he didn’t feel there was anyone in his life who truly cared enough about him to lend a hand.

That began to change when he became involved in a charity that gave him an opportunity to give back to the community. He was able to integrate his love of music and dancing with his work, and this was a real turning point for him.

Music had always been his escape, his therapy. It allowed him to get away from his troubles, lose himself in the beat, and push out the negative thoughts in his head by silently repeating positive lyrics about better days to come. Being a part of a community also raised his self-esteem, creating a source of social support and giving him a sense of belonging. He had found a place where he fit in, and where his contributions were making a real difference. For the first time in his life, he was proud of something he had accomplished. The other people involved in the charity and the dance music scene became his support system and slowly he began opening up to them about his struggles—both past and present.

Slowly, he began to have hope for the future—but he was still afraid that he was going to mess things up somehow. When the fever and other symptoms started, however, he did something different than usual. Rather than turning inward, shutting down, and accepting his fate, he faced his fears and reached out to people he thought might be able to help. And they did. They gave him information about HIV clinics in the area and advice about the types of providers to look for. They also helped him begin developing a new sense of himself as a person with HIV who wanted to live.

His experiences at the Ryan White-funded clinic were good, and he felt that the people there were pulling for him to succeed. He was very happy with the HIV clinic staff and their responsiveness to his needs. He saw their genuine desire to help him address the lifetime of issues that typically got in his way when it came to being safe and healthy.

When he took the first pill of his new HIV medication, he cried. It represented so much to him, and he worried that he might not succeed–that now that he actually cared about his future, it might disappear right in front of his eyes. But those fears were now balanced out by his hopes and dreams, as well as his newly found desire to live and to have a future. This time, he did not have to sort through those mixed emotions by himself. He called his closest friends and talked with them about what he was feeling and accepted their support and encouragement and felt stronger because of it.

Talking with him about what he was going through reminded me of the emotions and the fears that welled up inside me 23 years ago when I was diagnosed. In some ways, we don’t always recognize the significance of that positive test result. Being diagnosed with any kind of life-threatening illness is hard. When someone is faced with a serious illness, they may cope with the diagnosis by avoiding it, rather than getting medical care and treatment and following through on their care. I know more than one person who hasn’t done a good job dealing with a potentially serious medical problem, and I bet you do too.

So when we talk about HIV testing and treatment, it isn’t always as simple as just telling people to get tested or into care. In order to ensure people are linked to the care they need—and that they remain in care—we have to understand that people in stressful situations handle them differently. It’s about having the right systems, staff, agreements, and patient supports in place so that people who are newly diagnosed with HIV are not left hanging there trying to figure out how to live, how to go on, how to survive.

When my friend told me his story, what flashed in my mind was the scene in the movie, The Matrix, where Morpheus asks Theo to choose between the red pill and the blue pill. If he chose the red pill, he would find freedom and the ability to live an authentic life in real world—but it would not be safe, easy, or sexy. If he chose the blue pill, he would wake up back in a comfortable artificial reality that had pacified him, where he was enslaved without his knowledge or permission. Like Theo, my friend chose the more complicated and messier path toward the real world, and the ups and downs that will inevitably come with it. I could not have been prouder to know him in that moment.

If you haven’t been tested because you’re afraid of what you’ll learn, please take a lesson from my friend’s experiences. Early treatment can prevent many long-term consequences of HIV disease, and the sooner you get tested and start treatment the better.

And if you’ve been diagnosed but dropped out of care, please go back. Your life depends on it—and there are many people who want to help you get and stay healthy. You can find them—along with free and convenient HIV tests and other care/treatment services—through HIV.gov’s HIV Testing Sites & Care Services Locator. NIH’s MedlinePlus offers some resources related to sexual assault.