By Tom Moon, MFT
When Tez Anderson learned that he was HIV-positive in 1986, the doctor told him that he could expect to live for about two more years. He lost any sense of a future orientation, and fell into a deep depression. He continued to survive beyond his predicted deadline, but in the absence of any effective treatments at the time that might have given him hope, he came to see himself as someone who had very little time to live. He told people that he was a person living with AIDS, but in his heart, he experienced himself as someone who was dying of it.
Over the years he saw a number of competent therapists who treated individual symptoms—the loss of ability to enjoy life, social isolation, emotional numbness, and so on—but both they and he missed the big picture: how the history of surviving a unique epidemic was causing the turmoil in his life. It was only gradually, through his own self-exploration, and after half a lifetime of living with HIV, that he began to understand that bigger picture and to develop a conceptual framework to describe it. He called what he was discovering AIDS Survivor Syndrome, or ASS for short.
In 2013, he went public with what he had realized by organizing the first West Coast town hall by, for, and about long-term survivors of HIV. He expected that about thirty people would show up, but the event was packed with over two hundred, confirming that he was on to something that described the experience of many.
AIDS Survivor Syndrome is a spectrum of sustained trauma survivorship resulting from living through the pandemic. The most vulnerable seem to be those who became HIV-positive in the 1980s and 90s, when the diagnosis was considered terminal. But since ASS describes both those who are infected and those who are affected, many other people, including many HIV negative gay men and heterosexual women, find their own experiences described and reflected in the description of the syndrome.
What distinguishes ASS from the more commonly known and related Post-Traumatic Stress Disorder is the ongoing accumulation of repeated and sustained trauma through decades of the epidemic. It also includes other numerous unique challenges to survival, often including persistent behavioral health issues such as substance abuse, inadequate social supports, barriers to accessing community-based services, and truncated opportunities for employment and participation in society that result in insufficient financial resources and poor quality of life. Other common symptoms include chronic anxiety, hypervigilance, irritability, insomnia, suicidal feelings, self-destructive behavior, and chronic low self-esteem.
Anderson is the founder of Let’s Kick ASS, a grassroots organization of HIV long-term survivors focused on empowering other survivors to reclaim their lives, end isolation, and envision a future for themselves. They are powerful advocates for changing the mindset of such individuals from merely surviving to thriving in meaningful, productive, independent and connected lives. Based in San Francisco, there are rapidly expanding and now have chapters in Portland, Oregon; Palm Springs, California; Austin, Texas; and Washington, D.C. They can be reached at LetsKickAss.hiv
The reality of ASS is now being confirmed by empirical research. On November 3, Ron Stall, Ph.D. (Associate Chair for Science in the Department of Behavioral and Community Health Sciences at the Graduate School of Public Health at the University of Pittsburgh), will present his findings on the subject in San Francisco at a provider and community town hall entitled Research on the AIDS Survivor Syndrome: New Data from The Multi-Center AIDS Cohort Study and Voices of Survivors Themselves. If you would like to attend, you can RSVP at http://bit.ly/ASSStudyEvent
Tom Moon is a psychotherapist in San Francisco. For more information, please visit his website http://tommoon.net/
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