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 young—all 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 death’s door so long, it was all I knew.
I certainly had no idea then that I’d live long enough to be a long-term survivor, or live to be a 58-year-old man. I’m 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.
I spent decades planning to die, not intending to live. In 2005, it came to a head. I was having extreme anxiety and couldn’t 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?
I had to seek help. I saw several therapists who tried to treat the individual symptoms. They never said it was a part of something larger. They had never treated anyone with my experience of surviving a historically unique epidemic.
During the darkest of those days, I saw a TV show about post-traumatic stress disorder (PTSD) and returning Iraqi War vets. A lightbulb went off. It dawned on me that my mental state was rooted in the trauma of surviving AIDS for decades. It was like PTSD but seemed much more complex, given the duration of the deaths of the AIDS epidemic combined with a crippling fear of aging without any sense of future orientation. I coined a term for what it felt like: AIDS Survivor Syndrome.
When I began talking about it with other survivors, I heard that they too were dealing with something similar. In 2012, there were several long-term survivors who chose to end their lives rather than face the uncertainty of aging with a virus that had taken so much from them. I thought I understood why they did it. I realized there is a unique distinction to be made between HIV/AIDS long-term survivors and those who have been recently diagnosed with HIV. The two groups have distinctly different and overlapping psychosocial and clinical needs. Long-term survivors experience issues associated with accelerated aging, and many now die from cardiovascular, renal and liver disease; diabetes; hypertension; lipid abnormalities; non-AIDS related malignancies; frailty; bone loss; and dementia, that are not considered AIDS-related deaths.
In 2013, I founded Let’s Kick ASS-AIDS Survivor Syndrome, a nonprofit to both raise awareness about AIDS Survivor Syndrome and seek out solutions to overcome it. A small group of other activists and I held a town hall in San Francisco on September 18, 2013. Over 200 people attended.
While we had ample anecdotal evidence to support the existence of AIDS Survivors Syndrome and experts who agreed it is real, we did not have research data to back it up. That changed in November 2017, when Let’s Kick ASS held a town hall entitled “Research on the AIDS Survivor Syndrome: New Data from the Multi-Center AIDS Cohort Study (MACS) and Voices of Survivors Themselves.”
This World AIDS Day, we honor those we lost and those who survived the worst epidemic of the modern age. It a population that deserves recognition.
Tez Anderson is the founder of Let’s Kick ASS-AIDS Survivor Syndrome. Based in San Francisco, there are chapters in Portland, Palm Springs and Austin.