What Long-Term HIV Survivors Teach Us About Resilience

Forced to reconstruct their lives, these men know what matters most.

Posted Sep 24, 2020

HIV/AIDS awareness requires an understanding of its historically disproportionate impact on gay men. It also requires an appreciation of the LGBTQ community’s valiant and historic efforts to care for the sick and dying while fighting against both stigma and conservative politicians who believed the epidemic would disappear if it was ignored long enough. So it's a fortunate coincidence of timing that National Gay Men’s HIV/AIDS Awareness Day on September 27 occurs only four days before the start of LGBT History Month on October 1.

HIV/AIDS has been such a pivot of LGBTQ history that it’s impossible to separate them. Who better to teach us about this recent American history than gay men whose experiences as long-term HIV/AIDS survivors offer valuable lessons and wisdom—which anyone can learn from and apply in our own lives, whatever our age or HIV status.

For an article about HIV and aging that I wrote in early 2020, I interviewed three gay men who are long-term HIV/AIDS survivors, diagnosed before effective treatment became available in 1996. One thing that came through—loudly and clearly—in talking about their experiences of getting older while living with this serious medical condition: These men are models of what resilience looks like.

Connection matters

Craig Washington is a 60-year-old Black gay man in Atlanta. The social worker and therapist was diagnosed with HIV in 1985–the year the HIV antibody test first became available. “For the most part,” he told me, “I have been very blessed, very fortunate, that my health is pretty good, and a lot of the day-to-day energy level I’ve been able to sustain.”

Washington attributes his good fortune to his doctors, regular exercise and a support network of friends. “They look after me and they affirm me as I am,” he said. “A lot of folks don’t have that.”

 John-Manuel Andriote/photos
Chrysanthemums, in many cultures, symbolize longevity and immortality.
Source: John-Manuel Andriote/photos

Isolation and the loneliness that can result from it are harmful to our mental health and well being, too. They can lead to depression which in turn can undermine our good judgment about caring for ourselves—adhering to our medications if we are managing a health condition, for example, and protecting ourselves in situations that heighten our risk for something like HIV or COVID-19.

Purpose and meaning matter

When 53-year-old Michael Luciano realized that medication meant HIV wasn’t likely to kill him, he told me had to decide against the isolation the illness had imposed on him. “I learned a long time ago that because I no longer had one foot in the grave, I had to keep myself active mentally and physically in order not to just sit at home and twiddle my thumbs until I did drop dead.”

Diagnosed in 1992, Luciano wound up needing to spend 24 years on disability. “I stayed on disability,” he said, “and felt trapped there because the thought of going off disability and finding a job locally that would pay enough for co-pays and insurance paralyzed me.”

Today Luciano holds a two-thirds job as a treatment educator for Palmetto Community Care, an HIV services organization in Charleston, S.C. “I put a lot of time and effort into my work here,” said Luciano. “I am keeping myself busy in a way that I believe is meaningful for myself and for my community.”

Mind you, this man is living with severe osteoarthritis that makes exercise nearly impossible, kidney dysfunction due to the HIV drugs, bone density loss and, on top of it all, said Luciano, “the ongoing level of anxiety it generates for my future as I approach the age when all of these conditions [more typically] manifest.”

Living out loud

Harold R. “Scottie” Scott, 58, of Lebanon, Tenn. has found that his experience as a gay man who’s had to push back against society’s stigma toward gay men has helped him in living with HIV.

Diagnosed in 1991, Scottie’s doctors told him he didn’t have long to live. He left the workforce two years later other than some under-the-table work, sold his life insurance policy—and, he told me, waited to live out what he thought was going to be a short time.

But then, in 1996, the HIV drug “cocktail” became available, the combination of different medications that for the first time drove the virus into remission—and allowed HIV-positive people to begin getting back to their interrupted lives.

“Now here I am 25 years later, still alive and doing fairly well,” said Scottie. He volunteers at the local hospital two days a week. In fact, he is the president of the volunteers group. “I’m very open and out there,” he said, “so they know all about my being gay and the HIV and all that.”

He added, “Things like that just give me purpose and meaning.”

Living with a sense of purpose and meaning, breaking out of our isolation and loneliness, and cultivating a supportive group of friends—these are among the ingredients of resilience. They are relevant all year, not only on National Gay Men’s HIV/AIDS Awareness Day or during LGBT History Month. And they are relevant to anyone who wants to be resilient.