Imagine being in the prime of your life and living a fun and newly liberated existence and then in a matter of years having that stolen from you as you watch your friends die one by one constantly wondering if you will be next.
This is what happened to an entire generation of gay men during the AIDS pandemic and they lived through that pain, fear and heartache day in and day out for over a decade. Now fast forward 30 years later. Despite surviving there are very few who understand or even comprehend what you feel except for a small majority of fellow survivors. You are constantly haunted by those black days and the ghosts and memories of those you loved and lost. You are filled with a guilt of having survived while all those around you were snatched from this world.
This is AIDS Survivor Syndrome.
AIDS Survivor Syndrome describes the spectrum of sustained trauma survivorship. It is psychological state resulting from living through HIV/AIDS pandemic affecting those who made it through the plague unscathed and those who became HIV-positive in the 1980s and 1990s, when having HIV was considered a terminal diagnosis and the constellation of physical, psychological and emotional symptoms that a person (either HIV-negative or HIV-positive) may experience after living through intense grief and trauma during the years of the AIDS epidemic and after.
AIDS Survivor Syndrome is not PTSD (Post Traumatic Stress Disorder). It is a “syndemic” of psycho-social health issues that exists on a spectrum. It varies by degrees of intensity, and it affects those who survived the worst decades of HIV. The sustained accumulation of trauma from living through the early decades of the disease distinguishes AIDS Survivor Syndrome from the more commonly known Post-Traumatic Stress Disorder (PTSD), in which trauma typically involves a single event or events of limited duration. PTSD is misdiagnosis or a partial diagnosis at best.
“People who are HIV-negative, who lived through the AIDS epidemic may have survivors guilt,” said Dusty Araujo, a coordinator for the Elizabeth Taylor 50-Plus Network. “They were in the trenches, too—caring for friends and watching them die. They were marching, protesting, and trying to create change. Some people who are HIV-negative went through the same struggles, so for them to find community and support is important, too.”
What signs and symptoms define AIDS Survivor Syndrome?
· Lack of Future Orientation
· Panic from Unexpected Older Age
· Sexual risk-taking
· Self-destructive Behavior
· Substance Abuse
· 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 Anhedonia
· Deep Sadness
· Emotional Numbness
· Anxiety & Nervousness
· Irritability or Flashes of Anger
· Difficulty Falling Asleep or Staying Asleep
· Personality Changes
· Feeling Tense, “On Guard” or Hypervigilance.
· Low Self-Esteem & Self-Worth
· Sense of Hopelessness
Many older gay men who came though the plague years unscathed suffer from severe survivor guilt and anger which is common among survivors of natural disasters, combat, and epidemics. It refers to the feeling that many survivors have that they have done something wrong in surviving when others did not.. This is something that a community as a whole needs to be aware and understand because only with support and understanding can this condition be treated. The demonization of the older LGBT community by the younger community also adds extra weight to the depression and other issues that long term AIDS Survivor Syndrome sufferers experience.
There are few published studies looking into AIDS Survivor Syndrome. However, in recent years, LTS themselves have begun to come together and share about their lives in the aftermath of the epidemic’s darkest years. The evidence that a particular condition has been affecting them is too overwhelming to ignore. Unfortunately, few published studies means few health care providers or therapists are aware of the signs that an individual is experiencing. So we as a community must be aware of this condition and lend support to those suffering this syndrome, including myself.
I have seen my darkest days. My hell. Friends dying one by one. And to this day I wonder why I was spared when others were not. And there are many more gay men out there like myself who although we survived those black years positive or not who will always be haunted by them and have to live with the memories until the day we die and see our friends once again.
Perhaps the saddest of all is that there is no safety net for our older LGBT community and we have been woefully neglect to those who fought our battles. The true marginalized among us suffer.
But we do have pronouns. -smh-
The Elizabeth Taylor 50-Plus Network at San Francisco AIDS Foundation is a social support group for gay, bi and trans men over age 50 (both HIV-negative and HIV-positive). The group meets weekly for social events, community service projects and health and wellness learning events.
The Liberation Institute is a non-profit mental health organization offering professional counseling and psychotherapy plus other services such as yoga and meditation classes. Services are offered on a sliding scale and are open to anyone and everyone. People are not turned away for lack of funds. Call 415-606-5296 x102 for information or appointments or email firstname.lastname@example.org.
Perhaps the saddest thing is that there is no safety net for our older LGBT community and we have been woefully neglect as they are the true marginalized members of our community.