In January, San Francisco HIV longtime survivor (LTS) Tez Anderson, who founded the national LTS support network Let’s Kick ASS—AIDS Survivor Syndrome, devastated his thousands of online followers when he posted on social media that he’d received a posthumous suicide letter from another LTS, Dave Mills, 65, of Wilton Manors, Florida.
According to Anderson, the letter began: “Tez, unfortunately, if you are reading this, it was mailed when I’d reached a point where suicide was the only option left to me. ... I became too tired fighting to preserve my dignity and quality of life, to fight any more just for the sake of survival.”
Then wrote Anderson: “He was 65. He mentions AIDS Survivor Syndrome, PTSD, poverty, and a lack of services as factors in his decision to end his life. … It was a crisis of belonging and despair.”
Anderson went on: “But until we start addressing poverty, trauma, isolation, alienation, and the fact that LTS are overlooked and ignored by most ASOs [AIDS service organizations] and providers, who do not get it, this will keep happening. I’m working on a proposal for growing our grassroots movement. It is going to take all of us speaking up, standing up, demanding more than “just getting by” from a grassroots effort.”
The news of Mills’ suicide set of a fresh wave of online conversation among HIV long-term survivors, whom Anderson defines as people, like himself, who generally have lived with HIV since prior to 1996, the year that new medications changed HIV (for those with access to the meds) from a likely eventual death sentence to a so-called “chronic, manageable illness.”
Wrote one person under Anderson’s post: “It’s so sad that we live in a world of indifference where poverty, alienation and the HIV phobia that still surrounds long-term survivors.” And another: “I am one paycheck from being homeless and I know the struggles that he went through. I am devastated that he took that route and it was the only one that made sense for him.”
Still Here, but Forgotten
On a call in February, Anderson said that, in addition to physical and financial hardship and PTSD from having lived through AIDS’ darkest years, many LTS feel as though younger staffers at ASOs have no visceral, shared understanding of what they’ve been through.
“Part of what I hear from people is how hard it is to find providers who ‘get it,’” he said. “ASOs hire smart young people, getting in their school internship hours on the way to becoming therapists, who have no idea of the turmoil and trauma of the 1980s and 1990s and the PTSD that it caused us. It’s a specific lived experience, and when providers haven’t been there, LTS folks feel forgotten and invisible.”
Add to that, he said, the financial hardship suffered by many LTS, who often lost years of income and savings. “Often, people don’t even have enough money to live on and are barely getting by.”
So what’s the best hope and help for LTS? “It’s about finding others who understand and putting them together,” said Anderson. “In some places, you can have people over for a dinner party, but in the center of expensive cities like New York and San Francisco, people often don’t have that room, so things have to be hosted by organizations. LTS folks in isolated rural areas often have the most struggle.”
Thanks to Anderson’s brainchild, Let’s Kick ASS–like groups have sprung up in cities including Palm Springs, California; Portland, Oregon; New York City; and—not surprisingly—San Francisco, in the form of a Saturday morning “gentle yoga” class run by longtime survivor Patti Radigan.
“It’s a real community,” said Anderson, who says that, nine months after LKA groups started in San Fran, interviews with regular attendees found that they felt “less depressed, more connected, more hopeful.”
Similar groups nationwide, said Anderson, include GMHC’s Terry Brenneis Hub for Long-Term Survivors in New York City and The Reunion Project, a national group started in 2015 by prominent LTS activists Jeff Berry and Matt Sharp.
It all begins, said Anderson, with just one LTS in a given area finding another, then finding one more—and so on and so on (like that famous shampoo commercial!)
“Just start in a coffeeshop,” he said, adding that the SF group of LKA started “with me and three other LTS just talking about surviving.”
Fellowship in Chicago
One example of an informal LTS support group can be found in Chicago, where Joe Knell, 60, who works in health care, has for the past year convened an informal weekly group of LTS at the Center on Addison, an organization for LGBTQ seniors that also provides permanent housing.
The group is all gay men so far—currently it’s at about seven, though it’s been higher—although it is open to anyone who identifies as an LTS.
“It could be lesbians who were on the frontlines, straight allies, women who lost gay friends, or parents who lost children,” says Knell. “Anyone with lasting psychosocial ramifications.”
Also, importantly, he says, it’s not restricted to HIV-positive folks—it’s open to anyone who went through the worst years of AIDS in the U.S. and feels that it has scarred them. In fact, most of the men in the picture shown here agreed that they did not want to reveal their individual HIV statuses, although some are living with HIV.
Knell, who is HIV negative, says that he didn’t even know that ASS was not only “a thing,” but one that he suffered from, until he discovered Anderson’s LKA page.
“I lost friends who were very important to me. For years, I’d experienced depression, anxiety, always being on edge and angry, hyper-vigilant. When I read Anderson’s symptoms of ASS, I thought, ‘I’ve had these.’ Then I thought that there had to be other people in Chicago who’ve experienced these symptoms.”
Thus, he says, once he secured the space—which wasn’t easy, he said, with many LGBTQ and/or HIV/AIDS groups not getting back to him—the ASS Support Group of Chicago was born.
According to Knell, the group’s first meeting, in February 2019, was intense. “It was about 10 of us, all gay men, and we talked about our experiences living through the epidemic. I hate to say it, but the LGBTQ community today doesn’t really acknowledge ASS. They just want to focus on HIV treatment and PrEP and ‘getting to zero’ [lingo for ending the HIV epidemic]. There’s not a lot of focus on the fact that people are still alive who lived through this horrific experience where we watched people die every day for at least 15 years. People would be fine one day, then dead three months later. The behavioral health field has only now started to recognize ASS” as a syndrome that needs therapeutic attention.
One thing that comes up in the group, says Knell, is the shared experience of having moved away from cities, at least temporarily, to get away from bad memories. “I left Chicago for Mexico for years because I needed to get away,” he says. “There were too many ghosts.” One member, he says, talked about the trauma of being an HIV testing counselor and constantly having to tell people that they were infected, that there was no effective treatment, and that they would likely die within years.
And of course, he says, survivor’s guilt comes up a lot. “We ask ourselves, why are we still around when so many died? My best friend and I were doing the same things [sexually] at the same time, but I stayed negative and he died in 1985. I feel a lot of shame and guilt over that.”
So far, says Knell, the group hasn’t branched out to doing “fun stuff” like hitting the movies or a restaurant—but it’s in discussion. “One of the major symptoms of ASS, after all, is isolation.”
And isolation—as well as the blues—has been lessened for group member Jim A., diagnosed with HIV in 2000, since he joined. “I’ve had problems with depression and anxiety for years, and I realized that a lot of it started when the epidemic really took off back in the 1980s,” he says. “I didn’t know what to expect when I first went to the group, but the meetings made me realize I wasn’t the only one around who’s been impacted—and that’s a good feeling. I feel really close with the people in the group and look forward to talking with them every week.”
One thing they talk about regularly, he says, is loved ones they’ve lost—including, for him, his doctor back in the ’90s, with whom he was close. “It’s almost like these people who are no longer with us have become part of the group,” he says.
Part of an LTS social or support group? If you can get us a picture of the group with a smartphone held the long way (landscape) and set to “HDR,” we want to interview you and feature you! Email firstname.lastname@example.org. We want to help spark and nurture LTS social groups nationwide—perhaps worldwide!