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'I Spent Decades Planning to Die.' What It's Like to Survive HIV for More Than 30 Years

'I Spent Decades Planning to Die.' What It's Like to Survive HIV for More Than 30 Years
From TIME - December 1, 2017

In 1986, I moved from Atlanta to San Francisco because I had fallen in love with a man who lived here. The HIV test had come out a year earlier, and he knew he was negative, so I walked five blocks down the hill to the clinic and took The Test. Two weeks later, I was told it came back positive for HIV. I immediately made an appointment with a respected HIV doctor who told me I had less than two years to live. I was 26. It would be a few years before I figured out that I had acquired HIV in 1983.

From 1981 until 1998, having HIV was considered a death sentence. I witness my loved one and a huge swath of my community die youngall the while fully expecting to be the next one to die. At the end of the two years, I was still physically healthy, so he said I would be lucky if I lived another two years. It went on like that for a decade. Along the way, I watched my T-cells dwindle and had AIDS-related illnesses, all signs of certain death. I lived at deaths door so long, it was all I knew.

I certainly had no idea then that Id live long enough to be a long-term survivor, or live to be a 58-year-old man. Im aging with HIV, and I am not alone. I am in the majority. As of 2015, nearly 50% of all people living with HIV/AIDS in the United States were over 50 years of age. By 2020 that will rise to 70%. It is a paradigm shift in the demographics of HIV. It is also another frontier that no other generation has explored.

We watched HIV go from a death sentence and to a chronic manageable illness in the late 1990s. Patients were told after 1998 they could expect to to live a normal lifespan. That was a vastly different experience than for those of us living who were diagnosed before.

MORE: People With HIV Are Living 10 Years Longer

I spent decades planning to die, not intending to live. In 2005, it came to a head. I was having extreme anxiety and couldnt sleep. When I did sleep, I was haunted by horrific nightmares. My depression went from mild to severe. I became obsessed with suicide. Most of all, I was terrified by the idea of becoming an old man with HIV. I had no long-term goals, no retirement saved, no safety net.

Physically, I had developed pain and numbness in my feet and hands, known as neuropathy. I became sick with AIDS-related illnesses, and the treatments for those also exacted a price on my physical wellbeing. It all contributed to my dark, confusing mental state. My life had become unmanageable. I alienated what few long-time friends I had because I was so angry. By then, I had lost a lover and hundreds of friends to AIDS. Why had I survived when so many of my friends and community had died?

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