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Personal Story

More Than "Suriviving" -- Thriving

May 28, 2014

Once better treatment became available in the late '90s, we had to adjust to the idea that we weren't going to die tomorrow.

-- Perry Halkitis, 50
Researcher, New York City
Diagnosed with AIDS in 1988

Perry Halkitis (Illustration: A.E. Kieren)

Perry Halkitis (Illustration: A.E. Kieren)

There might be only about 50,000 Americans alive who've lived with HIV longer than 25 years. But boy, do they have wisdom to share with us.

If anyone ever had to make a conscious decision to go on living, it's performer-turned-activist Reginald Brown, 61, of Brooklyn. He was diagnosed with HIV in 1986, years before lifesaving drugs. "I went from total terror and fear and not understanding and ignorance to deciding, 'Okay, what am I going to do about this?'" he recalls. "It focused me, made me prioritize what's important."

Nearly 20 years later, he's never had an HIV- or AIDS-related illness. "A year ago," he says, "I had a spiritual awakening and said, 'Okay, the Lord is telling me something: You're still here and you need to get out there so people can see you." Now he not only works with the groups VOCAL-NY and ACT UP-NY to agitate for rent fairness for low-income people with HIV/AIDS, he's also active with Unity Fellowship of Christ, a church for LGBT people of color.

He's not alone. According to New York University researcher Perry Halkitis, author of the recent book The AIDS Generation and an HIV longtime survivor himself, folks who lived through the worst years of the AIDS epidemic have a lot to teach us. "In addition to fighting for our lives, sometimes in the streets, to get the government to pay attention to us and people not to hate us, we also learned incredible skills of resilience," says Halkitis. "Once better HIV treatment became available in the late '90s, we had to adjust to the idea that we weren't going to die tomorrow. We had to learn to take care of ourselves over the long-term, and how to have happy, meaningful lives."


Finally, it seems, HIV's longtime survivors are getting their due. In recent years, the documentaries We Were Here, Vito, How to Survive a Plague, and United in Anger have chronicled how such folks fought for effective HIV meds and policies while taking care of one another back in the '80s and '90s. Now they're telling their stories. In addition to Halkitis' book, Sean Strub, HIV-positive himself since the early '80s, has published Body Counts, his memoir of being part of the activist group ACT UP and the first openly HIV-positive candidate to run for Congress. Today, he fights for the repeal of laws that unfairly criminalize HIV-positive people for not disclosing their HIV status to sex partners, even when their virus is undetectable and they use condoms.

But longtime survivors, most of whom are over 50, often face multiple challenges as they age. Many of those challenges -- as well as how we can address them -- are covered in this special issue. But one of the biggest is loneliness and isolation, perhaps from having survived many loved ones and friends, which can sometimes lead to depression and/or substance abuse. "We did a study of people with HIV over 50 and saw very high levels of this," says Mark Brennan-Ing, PhD, a researcher at the AIDS Community Research Initative of America (ACRIA), which has a special focus on the needs of older people with HIV.

If that describes you, how do you break the cycle? First of all, talk to someone about it -- your doctor, someone at your local HIV/AIDS agency, a therapist, your life partner, or a trusted friend or family member. Maybe you need professional treatment. Maybe you want to go to a support group or a 12-step group, especially if you are dealing with an addiction. There are resources available at AIDS service organizations (ASOs) throughout the country -- you can find a national list at

Then it's time to reach out. "We longtime survivors need each other," says Halkitis. "There's still a lot of work to be done." So whether you're tapping into a national network like the Campaign to End AIDS ( or the longtime survivor group, or you're just the one who organizes a weekly movie night for your friends, you can step out of yourself and tap into something bigger. You'll feel better for doing it!

Just ask Reginald Brown. "My faith keeps me going," he says. "There's a reason I'm still here! It's to stand up for people who can't do it themselves. I have righteous indignation. When I see something that's not right, I have to do something about it."

Tips From the Pros

Perry Halkitis, 50

Don't let HIV define you. You need to move forward with your life and not define yourself solely by your HIV status. I am as much an HIV-positive man as I am a Greek-American, a scholar, a husband, and a top. And now, at age 50, I am a member of AARP. All of these elements are critical to my existence.

Be smarter than the virus. Yes, this virus is clever, but we are smarter. Stay up to speed with all advances in the management of our condition. Throughout the last 30 years, I have learned as much as I can about HIV and gained knowledge about how best to stay healthy. That provides me a sense of control as I grow older.

Partner with your doctor. I've worked very closely with my doctor. I ask questions, I probe, I doubt, and I decide. My doctor is my partner in this battle. Together we try to make sense of what my body is telling me and how we need to take care of it.

Hit the gym! Do I like going to the gym five days a week? Not really, but I do it. Part of growing older means I must maintain my level of activity to enhance my vitality and stamina. Exercise helps to slow down the ravages of aging, it keeps me limber and fit, and manages the potential effects of HIV and its treatments, such as lipodystrophy. It also means that I still look great in a bathing suit on Fire Island in the summer.

Focus on your total health. I pay attention to physical, social, and emotional health. I seek support from my friends, surround myself with people I love, recognize that the stress of work must be kept in check, and seek professional help when emotions are too big to handle. We fight HIV with triple combination therapies, and so we must also engage our own trinity of body, heart, and mind.

Reginald Brown, 61

Activist, New York City
Diagnosed with HIV in 1986

When I get tired, I know to stop and take a nap!

I eat a lot of fresh vegetables, usually choose chicken and fish over red meat, and avoid processed food and bleached flour.

I stopped smoking years ago and also went to rehab in 2010 for crack addiction.

You have to find a passion, whatever it is. Otherwise, life's a chore!

More From This Resource Center

Undetectable Viral Load and HIV Prevention: What Do Gay and Bi Men Need to Know?

Do HIV-Negative Gay Men Need Condoms if They're on PrEP? Here's What I Tell My Patients

This article was provided by Positively Aware. Visit Positively Aware's website to find out more about the publication.
See Also
More Personal Accounts of Older People With HIV/AIDS


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