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.
Loneliness, Stigma
Looking at the research, Brennan-Ing said the length of time since a person's HIV diagnosis does not appear to factor into the high rates of depression. What is driving it is loneliness and stigma.
"Feeling lonely is exacerbated especially among gay and bi men who are long-term survivors by the loss of lots of friends and lovers," he said.
The term AIDS survivor syndrome is not one commonly used within clinical and academic circles, said Dr. Malcolm John, director of 360: The Positive Care Center at UCSF who is overseeing the university's Silver Project research study of HIV-positive men aged 50 and older.
"I do think he is on to something there," John said of Anderson's use of the term.
One of the findings so far of the Silver Project has been a need for health professionals who treat people living with HIV and AIDS to focus on their patients' mental health issues.
The study is confirming what others have noticed, that a lack of social support systems for older individuals with HIV can lead to depression, isolation, and loneliness. And those can all negatively affect not only a patient's health and wellness but also their ability to utilize services.
"It became clear we needed to look at these things," said John, as they can impact the "functional status of our patients."
Of 135 patients enrolled in the Silver Project study, 34 percent said they had experienced depression within the last year. Twenty-two percent reported mild loneliness, with 13 percent having severe loneliness.
"Almost half our patients are lonely, basically 57 percent ... that is a significant finding to say the least," said John. "We are seeing a lot of patients who aren't clinically depressed need to start medications. It is due to the burden of being an AIDS survivor, the burden of living with chronic disease and co-morbidities. All those things start to weigh on people."
While AIDS in America has been graying for years, service organizations have largely been blind to the issue, said Brennan-Ing, so programs have been lacking for older people living with HIV and AIDS. Federal funding exacerbates the problem, he noted, as it is largely targeted at youth.
"When we are talking about AIDS, the service organizations really are geared up for serving a younger clientele," he said. "They are very focused on HIV prevention and treatment issues, so they don't know so much about aging issues."
The reverse is also true of aging service providers, added Brennan-Ing, who "have extremely limited knowledge of HIV. Really it is a question of building bridges between these two service systems."
In the mid 2000s, said Strub, attention did turn to the phenomenon of what some suggested was a manifestation of post-traumatic stress disorder in older HIV-positive men as well as older HIV-negative men who also lived through the horrors of AIDS.
"Definitely, there is residual damage many of us are living with," he said. "We just see so many people dealing with addiction issues, mental health issues - suicide rates are just astonishing - so there is definitely something there. There are efforts in many cities to create a greater sense of community around long-term survivors and mutual support for those who need it."
Support Groups Needed
San Francisco's LGBT Aging Policy Task Force, in its report finalized last week called "LGBT Aging at the Golden Gate: San Francisco Policy Issues and Recommendations," noted that older people living with HIV/AIDS "commonly experience increased prevalence of substance abuse and the need for mental health services."
The policy body cited social services, housing and homelessness resources as needed for this segment of the city's LGBT senior adult population, along with "socialization and support group opportunities." The report also reiterated calls for "stronger HIV/AIDS cultural competency among mainstream senior service providers."
The irony of being able to live with HIV and live longer, pointed out Strub, is that it allows people time to grieve and recall those they have lost. For some the adjustment from fighting not to die to figuring out how to live can be too much of a psychosocial jolt.
"Something I have heard a lot of people say in terms of my mental health is I had the most serious problem after I was getting better. It wasn't when I was so sick," recalled Strub. "Yes, I was sad, but my life was so focused and I had so much to do every day. It was when my health came back that I didn't have that clarity of purpose. I started to have more time to grieve people who had died. People were dying so fast your mind shuts it off."
As he recounts in his book, Strub sought out solace in isolation and moved to a house in the woods of the Northeast in order to regroup.
"Those were rough years for me after my health came back, rougher than when I was really sick. Most people find it bizarre, but I hear it often from others," he said. "In coming close to death your life changes. Your perspective changes; you cannot go back to living the same life."
Matthew S. Bajko wrote this article through the MetLife Foundation Journalists in Aging Fellowships, a program of New America Media and the Gerontological Society of America.