AIDS Survivor Syndrome: It's Real

David Fawcett Ph.D., LCSW
David Fawcett Ph.D., LCSW

Nate woke up covered in sweat from the nightmare he had dreamt a thousand times. In it, he endlessly ran from the faceless man with the gun, breathless and fearful, waiting for the bullet that never came. Deprived of sleep, his days and nights often merged, clouded by a meth addiction that helped him escape the belief that he was damaged goods, or the pain of his survivor guilt, or the disorientation of living a life he never expected to have. As those dark, early days of the epidemic became a historical footnote, Nate felt even more alone and turned increasingly inward, using drugs and impulsive, anonymous hookups to numb emotional pain.

Nate was a survivor -- barely. In 1986, while still in his 20s, he was diagnosed with HIV. That day his life changed forever with a "death sentence" that quickly came true for dozens of his friends. Even as he cared for his dying lover, Nate was hospitalized numerous times, at his worst declining into a skeleton, covered with Kaposi's Sarcoma lesions and suffering early-stage dementia. Nate had no choice but to go on disability, losing a promising career and forfeiting his dreams, financial security, and belief in a future. For years Nate's sole focus was survival.

Then, in 1996, he received a new class of HIV medication and his symptoms began to abate. Like a brightening sky after a storm, Nate awoke from a decadelong nightmare, except the psychological effects of the trauma lived on in his head. His body stabilized in the years that followed yet he alternated between overwhelming grief and anger. He withdrew, keeping his grief private, not even allowing himself to feel it lest he be overwhelmed. With each year that passed, fewer people even remembered the terrible early days of the epidemic, leaving Nate feeling alienated, damaged and alone.

Thousands of other survivors who lived through the devastation of the 1980s and 1990s continue to share similar feelings. While trauma can lead to symptoms such as depression, flashbacks, nightmares, and conditions such as Post Traumatic Stress Disorder (PTSD), long-term survivors of HIV (LTS) experienced a sustained, relentless trauma over the course of several decades, resulting in a spectrum of symptoms that appear to have created a syndrome unique to this population and more similar to what is called complex PTSD. This cluster of symptoms, named AIDS Survivor Syndrome (ASS) by activist and long-term survivor Tez Anderson, have not, until now, been scientifically assessed. That has changed and it appears ASS is indeed a real syndrome.

Related: Living and Aging Well With HIV: New Strategies and New Research

Recounting those early days, Tez Anderson states, "many of us went down a rabbit hole, experiencing years of anger, anxiety and poor sleep with nightmares." People were universally told to make plans to die, all the while stigmatized and, in many cases, abandoned. To address these issues Anderson started a grassroots organization in San Francisco called Let's Kick Ass: AIDS Survivor Syndrome which pays tribute to the experience of survivors and creates opportunities to heal emotional pain with community and tools such as gratitude and sense of purpose.

Anderson intuitively understood how it felt to live with ASS, but there was no scientific research to validate it. At the same time, Dr. Ron Stall, a noted HIV researcher, Professor of Public Health at the University of Pittsburgh and investigator of the Multicenter AIDS Cohort Study (MACS), became interested in the concept, noting that "street epidemiology tends to be pretty correct and street wisdom raises questions that are worth looking into very carefully." Dr. Stall's research has long focused on resilience in the face of adversity, especially regarding both HIV and addiction among gay men. By further defining ASS he hopes to identify strengths and characteristics of resilience among those who survived.

Dr. Stall and a research team examined records selected from the MACS study, a longitudinal research project of over 7,000 men with and without HIV dating back to the 1980s. They identified nine variables such as feeling depressed or isolated, or not believing one had a future, and then examined prevalence of these symptoms among men living with HIV and enrolled in the MACS study. Stall found that 22% reported experiencing three or more of the identified symptoms either "fairly frequently," "at least once a week," or "every day." This high prevalence appears to validate the concept of ASS and, with factor analysis, will provide a conceptual basis for the development of resilience-based interventions.

Stall and his team are in the early stages of exploring AIDS Survivor Syndrome but several things have become clear. The men in the epidemic, with or without HIV, experienced personal losses that numerically exceeded those sustained in World War I and which resulted in substantial psychological distress. The factors (symptoms) examined in the data appear to be strongly related to each other and variance among them seems to be best explained by a single factor. Definitively distinguishing AIDS Survivor Syndrome from depression or PTSD remains to be completed but long-term survivors have already found that the emerging shape of AIDS Survivor Syndrome validates their lived experience.

Much work remains to be completed. For example, do ASS variables function similarly across different groups such those living or not living with HIV, racial minorities, or age cohorts? Do HIV-positive men who score higher on ASS measures have worse viral load trajectories over time, or do certain resiliencies moderate the effects of ASS on viral load outcomes among HIV positive men? Armed with these data it will be possible to create interventions to address the needs of survivors. This may entail adaptation of existing therapies for depression and/or PTSD, or the development of interventions built from the ground up. They will be increasingly important as the cohort of survivors from the 1980s and 1990s ages along with uncertainties due to the physical and psychological consequences of a lifetime with HIV.

The enormity of the AIDS epidemic on the lives of survivors cannot be overstated. Overwhelming loss, stigma and discrimination, lifelong physical injury such as neuropathy, and psychological consequences, all under the specter of imminent death, have done real harm. As the scientific evidence for AIDS Survivor Syndrome takes shape, the experience of survivors is validated and opportunities to thrive and create resilience can be developed. Anderson, puts it this way: "For survivors who have wondered what their experience with HIV means now that it is considered a chronic illness, or who have struggled to express their condition to health care providers, this study harvests hope, allowing LTS to reauthor their story and find meaning and purpose."

Get updates on research and information at Let's Kick Ass. Learn more about HIV Long-Term Survivors Awareness Day, which is June 5, 2018.