What is AIDS Survivor Syndrome (ASS)? And Why It Matters.
By Tez Anderson, Founder & Executive Director, Let’s Kick ASS — AIDS Survivor Syndrome.
(Revised, May 2022)
AIDS Survivor Syndrome (ASS) describes the spectrum of sustained trauma survivorship resulting from living through the AIDS pandemic. It’s a unique “psychological syndemic” — two or more interrelated factors were working together to worsen the intensity of the elements.
When AIDS first arrived in 1981, unnamed, deadly, feared, and first erroneously reported to only affect gay men it created fear and scapegoating of an already marginalized community. It created a new form of stigma and discrimination. The collective experience of the1980s and 1900s AIDS pandemic was characterized by the mass casualties of young men as well as extraordinary caretaking. AIDS forced young people to do the work of elders. For nearly twenty years having The Virus was considered a death sentence.
We were told to get out affairs in order before having enough life experience to have many affairs.
Before I describe the signs and symptoms of AIDS Survivor Syndrome, I want to stress that ASS awkwardly includes our remarkable strengths and resiliencies. It is also a natural response to an extraordinary experience.
What we lived through in the early years of the epidemic, and what we are facing now as the first generation to be aging with HIV, is the stuff of heroes and “the definition of brave.” It is the hero's journey personified.
ASS is a natural response to an extraordinary experience — living through decades the AIDS pandemic.
Also, ASS is not limited to gay men with HIV but also anyone including HIV-positive heterosexual women and men and as well as people who are HIV-negative LTS also experienced tremendous losses and had their lives deeply affected by the epidemic. But since ASS describes heterosexual women and men who are living with the virus and those who are affected by the trauma and casualties of AIDS.
Watch this short video as HIV LTS describes ASS and life in the aftermath of AIDS.
ASS is not as simple as Post-Traumatic Stress
As with many psychological issues, AIDS Survivor Syndrome falls outside of the limited diagnostic range of the Diagnostic and Statistical Manual of Mental Disorders, 5th Edition (DSM-5).
PTSD) typically involves a single event or several events of limited duration. To my mind, PTSD is a partial diagnosis at best because it does not encompass all the symptoms nor the variety of traumas that AIDS Survivor Syndrome does. PTSD does not encompass the ramifications of the nearly 40-year duration of the AIDS pandemic. June 5, 2021, marked 40 years of the AIDS epidemic. A big one is being ill-prepared for aging with HIV and AIDS. We did not save for a retirement that we would live to see, but here we are at that age and older.
What are the signs and symptoms which define AIDS Survivor Syndrome?
· Depression
· Lack of Future Orientation
· Panic from Unexpected Older Age
· Social Withdrawal & Isolation
· Persistent Negative Thoughts like Deep Regret and overwhelming Shame
· Survivor’s Guilt
· Cognitive Impairment Such as Poor Concentration and Loss of Immediate memory
· Loss of Ability to Enjoy Life or Demoralization*
· Deep Sadness
· Emotional Numbness
· Anxiety & Nervousness
· Irritability or Flashes of Anger
· Difficulty Falling Asleep or Staying Asleep
· Nightmares
· Personality Changes
· Feeling Tense, “On Guard” or Hypervigilance.
· Low Self-Esteem & Self-Worth
· Sense of Hopelessness
· Irritability
· Self-Stigma
• Overwhelm
• Anxiety
· Suicidality
· Sexual risk-taking
· Self-destructive Behavior
· Substance Abuse
I’m not a psychologist or a doctor, so some say ASS is not “real.” However, the messages, emails, and comments I’ve gotten affirm it is real and untreated.
I’m not the only one who says ASS is rea.
“I met Tez Anderson [in 2016] in San Diego at the US Conference on AIDS. As an HIV doctor since the beginning, I was seeing men and women with ASS every day in my medical practice.
Tez and I quickly realized that we were on the same page; if you had HIV, you couldn’t go through a time as traumatic as the 80s and 90s without major life-changing ramifications. 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. Going forward, it was dismissive of your relevance.
Let’s Kick ASS fills what was a void. It provides opportunities for survivors of those heartbreaking times to approach the present and future with hope. My congratulations to Tez and Let’s Kick ASS for your great work.”“
— Michael Gottlieb, MD, AIDS pioneer and first to report on a cluster of diseases that would later be known as AIDS. That article is widely known as the beginning of the AIDS epidemic. Published by CDC in Morbidity and Mortality Weekly Report (MMWR) on June 5, 1981, Dr. Gottlieb was also Rock Hudson’s doctor.
There’s research on it too,
Dr. Ron Stall Ph.D. calls AIDS Survivor Syndrome “street epidemiology,” which he says “tends to be pretty correct and raises questions that are worth looking into very carefully.” In other words, there is value in our lived experience.
It is estimated that 70% of older adults with HIV have symptoms of trauma.
None of us imagined aging with HIV.With headlines like these:
AIDS Survivor Syndrome exists because of the passage of time. The early decades of the epidemic were the plague years filled with illness, fear, stigma, and death. A lot of death. As many of us were dying, we were also burying our loved ones and community. When around1996, newer, more effective anti-HIV medications were introduced, the death rate began to plunge. At first, it was a relief. HIV/AIDS became a “chronic manageable illness” that lessened the urgency of “the crisis.” It took over a decade for the reality of what we survived to begin to catch up with us and the reckoning to begin,
Complex Post-Traumatic Stress (C-PTSD)
C-PTSD is a diagnosis first proposed by Judith Herman, a professor of clinical psychology at Harvard University. In her book “Trauma and Recovery” (1992), she proposed the diagnosis of Complex Post Traumatic Stress Disorder (C-PTSD).
Her description:
The syndrome that follows upon prolonged, repeated trauma needs its own name. I propose to call it “complex post-traumatic stress disorder.” The responses to trauma are best understood as a spectrum of conditions rather than as a single disorder. They range from a brief stress reaction that gets better by itself and never qualifies for a diagnosis, to classic or simple post- traumatic stress disorder, to the complex syndrome of prolonged, repeated trauma.*
I assert that, like C-PTSD, what the individuals who lived through the AIDS Pandemic experienced and that is ongoing it“needs its own name” too. That AIDS Survivor Syndrome (ASS) feels correct.
Given the additional challenges to survival, including high levels of multimorbidity, persistent behavioral health issues, inadequate social supports, mass causalities, barriers to accessing community-based services, a lack of said services, poverty, and truncated opportunities for employment and participation in society resulting in insufficient financial resources and poor quality-of-life.
Further complications in diagnosis arise when one considers the high levels of co-morbidity seen in patients who have complicated trauma histories.
Over time, AIDS Survivor Syndrome has been studied, verified, and recognized as real,
What Others Have Said About AIDS Survivor Syndrome
In 2013, I founded Let’s Kick ASS-AIDS Survivor Syndrome, a nonprofit to raise awareness about AIDS Survivor Syndrome and seek 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.”
ASS is a phenomenon that has been well-documented anecdotally by HIV Long-Term Survivors. It’s unknown how a history of childhood abuse, other trauma-related events, and the impact of multiple causalities witnessed throughout the HIV/AIDS Pandemic contribute to making some more susceptible to ASS. Nor do we not know what the roles of resilience factors, psychological well-being, and spirituality play.
At its core, AIDS Survivor Syndrome is based on the notion that Aging with HIV is riddled with terror and uncertainty after decades of uncertainty. Read more about ASS at http://bit.ly/WhatisASS.
We’ve needed research data to confirm the impact of AIDS Survivor Syndrome. The good news is it’s underway, headed by 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.
Dr. Stall presented his findings at a San Francisco town hall in October 2017 entitled Research on the AIDS Survivor Syndrome: New data from the Multi-Center AIDS Cohort Study and Voices of Survivors Themselves.
Tez Anderson, Founder of Let’s Kick ASS, coined the term AIDS Survivor Syndrome after he lived through a five-year period where he experienced many of the symptoms. He had seen multiple qualified therapists during that time who were treating the individual symptoms. They were unaware of the history of surviving a historically unique epidemic and its underlying causality of the turmoil he was living. He began a grassroots movement to engage and empower HLTS in 2013.
Conclusions
- Kicking AIDS Survivor Syndrome requires interventions that focus on strengthening resiliencies and creating a sense of future orientation.
- Beyond mere survival, we have to change the narrative to a thriving mindset and make Healthy Aging with HIV the goal. We need to improve those factors we have control over so aging is not so perilous and fraught with fear.
- Survivors need to be celebrated and ennobled like survivors of other atrocities.
- We have to battle and reject HIV-related stigma by strengthening empowered networks of long-term survivors aging with HIV, including older gay and bisexual men, women survivors, and trans people. By increasing engagement, we battle depression and hopelessness.
- We also need Person-Center Health, where survivors are partners in their care.
- Trauma-Informed Care is also vital to understanding the full picture of health care for older adults aging with HIV.
- Cultural humility training to Health Care Providers is aware of the possible issues affecting an aging population who never expected to be aging.
- We also know that online social networks are helping older survivors from the community and create in-person communities. Much more needs to be done to reach those who are not engaged.
- We need to explore the role of technology and smartphone apps in helping survivors improve their quantity of life.
- Finding ways to overcome the financial difficulties faced by many survivors excludes them from participating in the community when they want to.
- Helping survivors think long-term and to see aging as something to embrace, not a barrier or limitation.
- Embrace a mindset of Healthy Aging with HIV, not merely surviving.
June 5 is now HIV Long-Term Survivors Awareness Day.
Originated by Let’s Kick ASS in 2014. Learn more at HLTSAD.org and www.hiv.gov/events/awareness-days/hiv-long-term-survivors-day.
Where is started
On September 18, 2013, Let’s Kick ASS — AIDS Survivor Syndrome held a first-of-its-kind, community-led town hall entitled The Definition of Brave. When over 200 people showed up, it was clear an unaddressed need was more prevalent than we knew.
The poster copy read:
With courage and compassion, we survived the darkest days of the plague.
Without access to effective treatments, we were forced to rely on each other and ourselves. As individuals and a community, we exhibited strength we didn’t know we had.
Now let’s all come together again to face the challenges of midlife and aging to envision our future. This free grassroots forum is the first Bay Area forum by, for, and about survivors. We have valuable lessons to teach our community and the world about living and survival — it’s time to embrace our role as elders, teachers, and leaders.
Coming together was powerful and much-needed. It was the beginning of Let’s Kick ASS-AIDS Survivor Syndrome (now a 501(c)(3)) and a call to action to do something for, by, and about HIV Long-Term Survivors who had gotten lost in the shuffle of progress in the fight against HIV/AIDS.
- Herman JL. Trauma and Recovery. Rivers Oram Press. 2001
Yours in resilience,
Tez Anderson, Founder/Executive Director, Let’s Kick ASS-AIDS Survivor Syndrome, 4111 18th St Ste 5, San Francisco, CA 94114
415–999–2788 | Email Tez@LetsKickASS.org | EIN: 46–5082959
Visit www.LetsKickASS.hiv. Follow us on Facebook https://www.facebook.com/AIDSSurvivorSyndrome/
Twitter @LetsKickASS_hiv and @HIVSurvivors
http://bit.ly/JoinLTSLeagueEmail
Postscript
Somewhere between Cape Town, South Africa, and San Francisco on Emirates Airlines Business Class! Yeah, you’re thinking, “how did you afford business class?”
I didn’t. When I arrived at the gate in Dubai after an 8-hour flight from Cape Town, I dreaded a 16-hour coach flight home. As I was boarding with my economy seat ticket, she tore it up. Printed a new one and said, “Mr. Anderson, we’ve upgraded you to business class.” I grabbed the ticket and headed upstairs on the A777, where the seats fully recline, there are a lounge, bar, and bathrooms with wooden seats and windows before anyone caught me. It was extraordinary, to say the least.
It is all part of the magic of #AIDS2016, the 21st International AIDS Conference, where I presented a poster/abstract on AIDS Survivor Syndrome and participated in a panel discussion entitled Ageism, HIV and Aging.
I was lucky to be presenting with my brilliant and beautiful colleague Hanna Tessema who works for ACRIA.
I was also damned fortunate to have a generous friend in Paul Tew, a marketing and public relations rock star, who made my wish come true. He created a poster that stood out in the sea of scientific-looking posters that are a staple of these conferences. It generated attention and created buzz from the moment I hung it. As a result, I had some amazing conversations with people way smarter than me and got to talk about interventions (my new passion and program.)
I also lucked out with a primo spot right at the top of the elevator. It was the first thing attendees saw when they entered the posters section.
Download What is AIDS Survivor Syndrome PDF here: http://bit.ly/WhatIsASS2017pdf
Tez Anderson, Founder of Let’s Kick ASS — AIDS Survivor Syndrome™, a grassroots movement empowering HIV long-term survivors to thrive since 2013.
I’m an HIV long-term survivor. I’ve lived with the virus since 1983. In 1986, I was given less than two years to live. My journey of survival is the basis for my advocacy and my life’s purpose in helping others living with HIV/AIDS for decades live their best lives.
As the founder of Let’s Kick ASS — AIDS Survivor Syndrome™, a grassroots movement empowering HIV long-term survivors to thrive since 2013, I coined the term “AIDS Survivor Syndrome” in 2011 to describe something I lived through, not have a name and nor any treatments.
My work led me to create HIV Long-Term Survivors Awareness Day (HLTSAD) in 2014. It is held annually on June 5, on the anniversary of the first announcement by the CDC of a mysterious illness killing young gay men in Los Angeles on June 5, 1981. The beginning of the AIDS epidemic became HIV Long-Term Survivors Awareness Day on June 5, 2014. It is an official awareness day on HIV.gov.
Tez online: Facebook TezAndersonLKA | Twitter @TezAnderson
LinkedIn: https://www.linkedin.com/in/tezanderson
Facebook AIDSSurvivorSyndrome | Twitter @LetsKickASS_hiv | Instagram letskickass
HIV Long-Term Survivors Awareness Day is June 5
Facebook | Twitter @HIVsurvivors | Instagram | HLTSAD.org
