February 24 2026, 08:15 
Tez Anderson decided to get tested for HIV after he moved to San Francisco in 1986 at the age of 25 and began dating his new boyfriend. When the results came back positive two weeks later, the doctor told Anderson he had 18 to 24 months to live. It was two days after his 26th birthday.
Devastated by the news, Anderson began planning his death. But decades later, he remained relatively healthy while watching many friends and acquaintances die of HIV-related illnesses. As he approached age 50, Anderson realized, “Oh, my God, I’m going to be an old man with AIDS. What am I going to do?”
Related
The real-life story of Ron Woodroof, the hero of the “Dallas Buyers Club,” depends on who you ask
“I had not put any money away in a 401K or savings or retirement account — dead people don’t need retirement accounts,” Anderson told LGBTQ Nation. “I didn’t make any plans for being old — I was making plans to die young.”
He began having panic attacks, awful nightmares, and feelings of depression and anger. He kept imagining himself as homeless. He also began lashing out at people close to him and worried that AIDS had somehow damaged his brain. Simultaneously, he went on prolonged medication treatments that gave him constant diarrhea and difficulty sleeping.
Never Miss a Beat
Subscribe to our newsletter to stay ahead of the latest LGBTQ+ political news and insights.
Subscribe to our Newsletter today
“It felt like I was having a nervous breakdown,” he told LGBTQ Nation. “I guess in some regards I was, but it was all around the idea that I am going to live, which most people would think seems illogical: to have a panic attack because I’m going to live.”
Having long had an interest in psychology and having undergone lots of therapy, Anderson began researching trauma and its possible impact on his life. While speaking to other gay men who had also survived the height of the pandemic, Anderson gradually came to understand that he and many others had been experiencing features of post-traumatic stress disorder (PTSD).
He personally didn’t like the word “disorder,” however, because — considering all the death, illness, uncertainty, and stress they had experienced while caring for dying friends and facing widespread anti-gay stigma — their feelings seemed quite natural and logical to him.
Eventually, he coined the term AIDS Survivor Syndrome (ASS) and, in 2013, decided to hold a town hall at the local LGBTQ+ center so that other long-term HIV survivors could share their experiences.
He expected about 40 people to show up — over 250 attended. They wrote their feelings and experiences onto giant pieces of paper on the walls. Over the evening, they all realized that they were not the only ones with these feelings, and “that there was community in that survival,” Anderson said.
Anderson is now 66 years old and the executive director of Let’s Kick ASS, the nation’s first and largest group dedicated to improving the lives of long-term HIV survivors.
Around the time of the group’s first town hall, Anderson began collaborating with Dr. Ron Stall, a longtime HIV researcher at the University of Pittsburgh, who had been examining the Multicenter AIDS Cohort Study (MACS), a long-term study tracking the psychosocial and biological effects of HIV infection in over 7,300 gay and bisexual men since the late 1980s.
Together, the men identified the most common features of
While ASS shares some features of PTSD and complex-PTSD — both of which are psychological illnesses listed in the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) — both Anderson and Stall say that neither diagnosis encompasses all of ASS’ symptoms, a variety of traumas caused by the nearly 40-year duration of the AIDS pandemic.
While ASS is real, it’s not a widely recognized or diagnosable mental disorder. It’s unclear how many people with HIV survived the height of the AIDS epidemic and how many might currently suffer from ASS (though Stall found that 22% of gay and bi men who survived the AIDS epidemic reported experiencing three or more symptoms of ASS, including grief over lost partners). This makes it all the more necessary for Anderson and other activists and care professionals to raise social awareness about it.
Towards that end, Anderson also founded HIV Long-Term Survivors Awareness Day, held every June 5, to honor, support, and raise awareness of the challenges they face. Through these and other efforts, ASS is gaining wider recognition.
“If you had HIV, you couldn’t go through a time as traumatic as the 80s and 90s without major life-changing ramifications,” said Michael Gottlieb, the pioneering doctor who was among the first to report on a cluster of diseases that would later be known as AIDS.
Gottlieb described ASS as an experience of “depression, isolation, economic hardship, careers put aside, and a feeling that society had no idea what you had been through and didn’t much care,” adding, “Going forward, [society at large] was dismissive of your relevance.”
Since coining the term, Anderson says the most eye-opening experience has been the large number of people who thank him in meetings, conferences, and on social media for explaining what they’re living through. They tell him that he helped naturalize their experience and erase the stigma and abnormality attached to it. He also notes that one doesn’t have to be LGBTQ+-identified or even HIV-positive to experience ASS; straight HIV-positive Black women and other HIV-negative survivors from the ’80s and ’90s can exhibit symptoms.
Greater awareness about ASS is particularly important now, Anderson says, as the current presidential administration has cut research and programs into HIV awareness and prevention. At the same time, Anderson says that most medical authorities are primarily interested in the physical effects of HIV and HIV medication on aging bodies, and most mental health professionals may have never heard of ASS, leaving those who struggle with it to the internet to find more information and support.
Anderson is still figuring out his future: He has developed multi-drug resistance to various HIV-treatments and currently takes three pills a day and a shot every six months just to keep his viral load undetectable. He and other people with ASS have experienced rapid aging and deterioration, making them look much older than they actually are. The isolation caused by ASS makes it feel immensely healing, he said, whenever people acknowledge them with genuine interest, kindness, assistance, and care.
Despite all the hardships, he thinks ASS has given him and its other survivors a special gift.
“For a population like long-term survivors who have lived so close to death for now 30 or 40 years, we have something to offer. We’re a resource about life and death, and our view of the world, I think it’s valuable. We’re not just people who need help. We are people who are restored,” he said.
“I want people to feel like this experience meant something for them and for their experience in the world, and how they’re a repository of the knowledge that most people don’t have,” he continued. “Many of us have, at some point, become comfortable with the idea of dying. It has been difficult: a lot of therapy, a lot of crying…. Living with one foot in the grave and one foot in the living is a unique perspective, and it helps us be sort of death doulas, if you will.”
Subscribe to the LGBTQ Nation newsletter and be the first to know about the latest headlines shaping LGBTQ+ communities worldwide.