My Close-Knit Latino Family Helped Me Beat Drug Resistance

Growing up in Orange County, California, the child of Latino immigrants, Jorge Diaz learned early that “I came from a different social class and … [to some] being Latino meant being inferior.”

His parents never took government assistance, even as they struggled financially. “My parents built everything they now have from nothing. It created this sense that we must do it on our own.”

The insistence on self-reliance was so engrained, he didn’t seek help even when he learned he had HIV. But as a 21-year-old college student and go-go dancer with no insurance, he was terrified. 

Now a mental health and substance abuse program manager with Bienestar, a social service health organization for Latinos in Southern California, Diaz shares his story to educate others and combat stigma and shame.

In 2001, Diaz says, “I viewed HIV as a death sentence. I felt a sense of loss — loss of health, loss of identity. The shame I brought upon myself, the fear of being rejected by my peers … or being viewed as a disappointment to my parents and family — was all going through my head.”

He was afraid of a paper trail, too. “What I heard from that [first doctor’s visit] was, ‘If you want to be invisible with your HIV, clinical trials are the way to go.’ Looking back, I simply feared being outed.”

He took the advice and enrolled in a clinical trial. “It was the worst experience of my life. It was my first regimen; in a sense, my first step into the world of HIV. Managing the side effects became overwhelming; Sustiva was not an easy medication for me. It truly gave me horrible side effects. The vivid dreams caused me to have insomnia and the insomnia impacted so many aspects of my daily functioning.” 

Yet every night he’d go to the club to dance, and escape into an alter ego who was the center of attention. “[Dancers] are idolized and sexualized by many,” Diaz admits. “It was like living a double life. On one hand, I was desirable and sexy. However, when the lights went off, the crowd went home and the club closed, I was simply another HIV-positive guy.”

Looking back, he admits, “I wanted to be liked by those who didn’t even know me. I wanted to be loved by all the wrong men. I felt ashamed of myself, yet I wanted to be desired.”

Five months into his clinical trial, his treatment failed, which later impacted his treatment options. He wasn’t able switch to Atripla, the once-a-day regimen, when it came out because Sustiva was one of the drugs included in the regimen. “I soon realized how many new drugs are, at times, a combination of a new drug with an old one,” he says.

Six months after that treatment failure, Diaz finally came out to his mother. “It was the hardest thing I ever had to do, but I couldn’t manage the secret anymore. We both cried. We both held each other … Then, my mother stopped crying. She looked me in the eyes, grabbed [my] hand, and said, ‘We are going to be OK, and we will fight together.’ And indeed, we have. My mother was instrumental in my fight against HIV.”

With her support, Diaz had success with his second regimen and eventually earned a master’s degree. “Graduate school allowed me to work on me and process unfinished business. It was an amazing opportunity that paved the way to begin to heal … and forgive. Forgiveness truly set me free.” 

He choose social work to help guys like him. “I wanted to provide the space for individuals to process how HIV has impacted [them] …and identify healthy coping skills and tools during this life changing experience. There is shame and stigma associated with mental health. I wanted to be part of that change, be part of the solution.”

Having overcome so much, Diaz now talks about his “amazing life,” full of nieces and nephews to whom he is godfather. Next he plans a series of books on the Latino LGBT community and maybe “running for office — and winning!”