Living with the demons of AIDS survivor syndrome

SAN FRANCISCO — The night Tez Anderson’s lover Gary Lebow died in the bed they shared, one of the last things Lebow did was open his eyes and say: “Do you know how much I love you?” That moment haunts Anderson until today. 

Lebow died of health complications related to AIDS in 1999, at the end of the so-called plague years of the 1980s and 1990s — when survivors say they sometimes attended three or four funerals a week and constantly faced the real possibility of slow, painful death. Though exact figures are hard to come by, some experts believe that 15,000 to 20,000 people died of AIDS complications in San Francisco alone during those decades.

Lebow was just 35 years old when he died. “It seemed ironic to me. (Lebow) was dying when everyone else was living,” said Anderson, now 54 and an AIDS rights activist.

Since then, huge advances in modern medicine have turned HIV from a condition that could seem like a death sentence to one that can be largely controlled by a hefty regime of medicines and careful treatment. But now many of those who lived through the worst years of the AIDS epidemic say the physical disease itself was not the only thing that caused harm. So too did the mental anguish left behind with those who watched their friends, lovers and family members die against a backdrop of a society that was often slow to care.

Many in Anderson’s generation of HIV-positive people now believe they live with a kind of post-traumatic stress disorder he recently dubbed AIDS survivor syndrome, or ASS. Anderson's organization, Let's Kick ASS, wants doctors to recognize the condition — which under the Affordable Care Act's new mental health allowances he hopes could someday result in treatment for long-term AIDS epidemic survivors. 

Anderson, who says for years he feared he would also lose his life to health complications related to HIV, has been treated for anxiety and depression. ”Living with dying for 25 years had an impact on my mental well-being,” he said.

Anderson was perhaps the first to come up with a name for his condition, but the concept of diagnosing a syndrome for some of those who lived through the epidemic’s peak had been fermenting in the international HIV advocacy community for some time. "The ideas have evolved and jelled by a very healthy mix of interactions and research amongst researchers, clinicians, people living with HIV and service organizations who are facing the implications of an aging population facing chronic care," said Ben Collins, 67, of the London-based International HIV Partnerships. Collins himself has lived with HIV since 1981. 

Collins' organization is working to develop a think tank called ReShape that will address, among other concerns for HIV-positive people, mental health issues resulting from living through the epidemic.

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."

While some think Anderson's choice of the acronym ASS is unfortunate, he himself disagrees, citing a kind of black humor characteristic of many epidemic survivors. “It is people with AIDS, it’s gay people, and you want to call it ASS? But I thought it’s something funny to describe something serious. I liked it, in the long run,” he said.

At a recent Let’s Kick ASS event at the San Francisco LGBT Community Center in the Castro neighborhood, a major historical center of the gay community, many said they've had symptoms similar to Anderson's. They experience the kind of chronic guilt, substance abuse and suicidal thoughts commonly faced by veterans or other survivors of physical danger. Combating suicide, in particular, has played an integral role in Anderson’s mission. Let's Kick ASS started in early 2013 as a response to the death of veteran AIDS activist Spencer Cox on Dec. 18, 2012, after he had stopped taking his HIV medications. 

There was much debate after Cox's death about whether living with the legacy of the epidemic killed him. Anderson and his organization's members say what The New York Times called "pill fatigue" was actually suicide. "He lost his purpose for living," Anderson said. "We need to do something to keep the people who’ve fought to stay alive for the long haul."

Many of the survivors at the Let’s Kick ASS event, it seems, made a kind of existential decision to fight for their lives through the epidemic. The AIDS epidemic also had an impact apart from the damage it caused. Though it meant death and suffering, it also allowed those enduring its effects to band together — to challenge their doctors and health policymakers on the kind of health care, or lack thereof, they were receiving.

Coping with the epidemic started the concept of AIDS marches and ribbons, which have inspired other health care communities to spearhead fights against diseases such as breast cancer and leukemia. It inspired art like the latter-day works of Keith Haring and created a sense of community. "In some ways it was really a stroke of luck, or I don't know how to phrase it,” said Michael Siever, 63, a longtime AIDS rights advocate.

"The ’70s were the formation of modern gay communities in many ways. Had this happened 20 years earlier, there really wasn't the gay community. By 1981 … there were strong gay communities in pretty much every urban area in the U.S. That made it easier for us to band together and fight," he said. 

But others found they did not feel the same sense of community that Siever and Anderson did.

Bonnie DeAngelis, 51, moved to San Francisco in 1987 and took a job at an accounting firm. Two years later, she discovered that the husband she had met there had infected her with HIV. Unlike many of their fellow HIV-positive San Franciscans, DeAngelis and her husband led double lives, hiding their illness from friends and family. Her husband died in 1994, and as she grieved for him, DeAngelis found only isolation, which compounded the trauma of living with a life-threatening virus.

"As a white, female heterosexual working in the financial district, I did not fit into any of the support groups that developed around this disease. I completely stepped away from the AIDS community," she said. 

Anne Donnelly, a longtime advocate for people with HIV/AIDS and policy director at the philanthropic organization Project Inform, said that if doctors do recognize ASS, they must take into account people like DeAngelis. "The experience of this type of thing is a very individual experience," Donnelly said.

Donnelly herself is not a member of the LGBT or HIV-positive communities, but so many of her friends and acquaintances died during the epidemic that she says she also suffers the mental backlash. "I do feel like I suffer from — I wouldn't call it PTSD. I definitely have a certain trauma, not only from all the deaths but a lot of other life issues," she said.

Donnelly too wants the syndrome acknowledged. "Having (AIDS survivor syndrome) recognized as a legitimate mental health paradigm is important,” she said.