What is AIDS Survivor Syndrome (ASS)?

AIDS Survivor Syndrome (ASS) describes the collection of signs & symptoms affecting long-term survivors of HIV.

The signs & symptoms of ASS include combinations of depression; survivor guilt; lack of future orientation; personality changes; ANGER; anxiety; emotional numbness; insomnia; social withdrawal & isolation; hopelessness; substance abuse; sexual risk-taking; and/or emotional numbness.

Stemming from post-traumatic stress.

It is happens after the AIDS tsunami recedes. When the survivors of the crisis have had time to evaluate the loss, grief and fear of the tragedy that unfolded. It describes where we are now 30+ years into the AIDS epidemic. Life is going on but some of us are still are still traumatized.

ASS is a perfectly natural response to surviving a life-threatening trauma. In the case of the AIDS epidemic it was a crisis that lasted 20 years. It exists on a spectrum from very mild to severe.

AIDS Survivor Syndrome manifests in aimlessness, depression, broken relationships, substance abuse, high-risk behavior and, in its most extreme results in suicide.

READ WHAT Al Jazeera America says about AIDS Survivor Syndrome:

But even its proponents admit that it may take some time to convince doctors that ASS is real and open up its sufferers for special treatment. For most of the people in the medical and health care policy communities, “the furthest thing in their mind is ASS,” Anderson said. “We want to say to doctors and health care professionals, if you have someone living with HIV for this many years, you need to understand that these symptoms together add up to a kind of PTSD.”

“Survivor syndrome” was coined by Dr. William G. Niederland to describe what the survivors of the death camps were going through 16 years after the holocaust ended. We are at that point in the history of HIV.

When huge swaths of your family of choice and community die and you survive, and with 50,000 or more people in the US living with HIV, there are wildly varying responses to living after decades of preparing to die.

The evidence of ASS is anecdotal but overwhelming. Health care professionals and therapists often focus on individual symptoms and not the totality of them nor the cause. So it under diagnosed and tragically under treated. It wreaks havoc on survivors and their loved ones and no one is looking for it.

All the optimistic talk about an “AIDS-Free Generation” and “Getting To Zero” sounds exclusionary to long-term HIV/AIDS survivors. If AIDS disappeared tomorrow the psychosocial aspects would remain in tens of thousands of people who lived through the 1980s and 1990s. Many survivors think the end of AIDS will happen after we’re dead. And this is a group whom are already ignored feel ostracized feel even more discounted, like our losses and grief and terror meant nothing. Like the world would rather move on.

One of Let’s Kick ASS’ goals is to research long-term survivors and measure resilience and the effects of ASS. — By Tez Anderson

Here is a video about ASS:

  • Kinsey6

    I’m so glad to have found this site. I was Living in Laguna Beach in the 80s (which I hear had a higher per-capita rate of men with AIDS) and my friends were dropping like flies back then. Sometimes I feel like I’m a lone survivor, and what’s even more problematic for me is that I live in Missouri now, far away from any help I might be able to receive if I were in a place like San Francisco. I’m so glad there are groups like this now though and that people are beginning to see what problems people in our age group now have.

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