Trauma of AIDS Epidemic Impacts Aging Survivors
The nightmares terrorized San Francisco resident Tez Anderson for years. He would dream he was buried deep underground and wake in the middle of the night feeling panicked.
"It felt like I was in a lot of danger. It was not so much about death, it was more that I was in peril," recalled Anderson, who turns 55 this month.
Three decades ago Anderson learned he was HIV-positive and, like many other gay men of his generation, witnessed what felt like a holocaust as he watched countless friends, lovers, and associates be felled by AIDS. Anderson survived to see the introduction of antiretroviral therapy in the 1990s, turning what had been a death sentence for so many into a now manageable chronic disease.
Yet the traumas he witnessed exacted a psychological toll as he aged. It began with the 2000 death of a lover, Gary Lebow.
"He was in and out of a coma. One day he opened his eyes to me and said, ’You know how much I love you?’ He then closed his eyes and I said to him, ’It’s okay to go. Your mom will be okay; I’ll be okay,’" recalled Anderson. "It was a very powerful gift to me that I was with him when he died. It got me over my fear of death; I wasn’t afraid of dying anymore, I was afraid of living."
Within five years Anderson said he had taken "a wrecking ball" to his life. He ended friendships, became agoraphobic, and "hibernated" inside his apartment.
"It was like trying to catch a waterfall in my hands," he said. "I was drowning."
The advent of online hookup and chat sites for gay men led him to meet his now husband, Mark Ruiz, seven years ago. The two "became a unit," said Anderson, and Ruiz "was part of my healing process."
Over time he started to slowly venture back out into public, spending time at Cafe Flore bonding with other men he met at the Castro district coffeehouse who were also long-term survivors of the AIDS epidemic. Those conversations showed Anderson he was not alone in feeling adrift.
"When the AIDS tsunami receded, the people left behind were left wondering what just happened," said Anderson.
In November 2012 Anderson and Ruiz decided to form a new group they called Let’s Kick ASS, which stands for AIDS Survivor Syndrome, for long-term survivors looking to reconnect with others. A secondary goal was to advocate for services and programs tailored to meet the needs of people living with HIV or AIDS as they age.
"We have needs and situations that are different," said Anderson.
For one, a whole generation of gay men grew up not knowing if they would see their 40th birthdays, let alone age into their 50s, 60s, and older. That began to change within the last decade, as life longevity became a new reality for people living with HIV or AIDS.
"I am not looking at an epidemic and desperately trying not to die myself," said longtime AIDS activist Sean Strub, 55, who this year released his memoir Body Counts: A Memoir of Politics, Sex, AIDS and Survival (Scribner, January 2014). "I may die of something else. My priorities are different."
The number of older people living with HIV and AIDS is growing, not only in the Bay Area but also nationally and across the globe. As the Bay Area Reporter first reported in 2011, people 50 years of age or older now account for the majority of people living with an AIDS diagnosis in San Francisco. In 2012, the number of people in the city 50 years of age or older living with HIV reached 51 percent.
Courtesy SAGE and ACRIA
Nationally, it is expected that by 2015, 50 percent of those living with HIV will be 50 or older, with the number rising to 70 percent by 2020, as highlighted during a workshop on LGBT aging issues presented at an American Society on Aging conference in San Diego last month. Adults 50 and older already account for roughly 11 percent of all new HIV infections, noted the presenters.
Globally, the Joint United Nations Programme on HIV/AIDS estimates there are 3.6 million people aged 50 years and older living with HIV.
Research is showing that older people with HIV are dealing with elevated levels of depression, loneliness, and suicidal tendencies in addition to various co-morbidities or non-AIDS-defining illnesses such as cardiovascular disease, and kidney and liver failure.
A 2013 study of 160 people living with HIV or AIDS over the age of 50 in the Bay Area found that 43 percent suffered from depression and 48 percent reported having anxiety. (A Chicago-based survey of 210 older LGBT people conducted in 2010 found 46 percent reported being depressed.)
"That very much catches people’s attention, as well as the level of co-morbidities or this burden of disease people are dealing with," said Mark Brennan-Ing, Ph.D., the director of research and evaluation at New York-based ACRIA who co-presented the LGBT aging workshop in San Diego. "People are just shocked to find out people in their 50s and 60s are dealing with levels of morbidity in people we see in their 70s and 80s."
Brennan-Ing, who is also an adjunct professor at the New York University College of Nursing, believes their disbelief is partly due to ageism.
"When we hear of old people being sick and having a lot of illnesses, people say, ’Oh they are old.’ But we are talking about a group whose average age is 50, and for most folks, that is what age they are. It hits home a lot more for them," said Brennan-Ing.