Long-term realness

What makes a long-term survivor of HIV—what qualities or traits describe them?

That’s the question we asked our followers on Facebook, Instagram, and Twitter. They served up some honest feelings and experiences

“One thing I learned a long time ago, is that we didn’t have a recipe, and each one of us had found different coping skills to survive and keep surviving. That is Important to remember, that even if we say survivors, we are the verb, the action—surviving—because the HIV pandemic has not ended.”—Jesus Heberto Guillen Solis

“I have survived almost 24 years. I take my meds, see the doc as scheduled, and try to keep an upbeat outlook on things.”—Maurice Lamontagne

“Keep serving, no matter what. We always keep serving.”—Kenny Martinez

“Long-term survival means different things to different people, but always should include anyone who has fought and struggled to live and thrive into the future despite the challenging odds and unintended consequences of survival. HIV/AIDS survivors often have experienced many struggles in addition to HIV such as abuse, addiction, stigma, trauma, and many others.”—Matt Sharp

“A long-term survivor is ...someone who is resilient, someone whose answer to problems, troubles is, ‘What’s next?’ in a positive way. Someone who sees value in life and living it (this is much harder than I thought it would be). What makes us ... us? We are, in my experience, an obstinate lot. We’re stubborn about life, we have things to do, points to be made, places to go, people to meet, food and drink to celebrate. We celebrate life every day. We’re cautiously optimistic and intentionally skeptical.”—Hans-Erich LK

“When I think of ‘long-term’ I think of people who were on the front lines when there were no drugs and then somehow survived long enough to take the very first (and very harsh) early treatments which saved their lives but caused serious, long-term problems (neuropathy, kidney disease, lipodystrophy, etc.). However, every day with HIV can feel like an eternity, and someone with only a few years poz may feel ‘long-term.’

It’s all about perspective, right?”—Lillian Thiemann

“Lonely.”—Doug Mc Donald

“Strength.”—Kenneth Garaty

“Resilience.”—Kim Samson

“Luck.”—Gee Poz

“Wounded, but empowered.”—Rovers Dog House of Art

“It’s been 40 years since AIDS first appeared in our lives. I acquired HIV in 1983, making me a long-term survivor. I’m part of a sizeable resilient generation who disprove the meme ‘we lost an entire generation to AIDS.’ We lost much of a generation, but many of us are still here, surviving against the odds. Today, HIV long-term survivors are 25% of 1.2 million people living with HIV in the U.S.

“As individuals and communities, we exhibited strengths we didn’t know we had. We forged a strong community from the AIDS pandemic. Without access to effective treatments, we were forced to rely on each other and ourselves. With courage and compassion, we survived the darkest days of the plague. Surviving AIDS has given my life meaning and purpose. Now I do what I can to advocate and demand action, not merely to survive but to thrive.”  —Tez Anderson

"Someone who can process the initial shock, fear, sadness, and perhaps shame—and use the experience to love themselves better and more deeply than before.”—Matthew Cloran

“As a 30-year survivor I would say a sense of spirituality has been important to me. I’d describe myself as ferociously independent; ultimately, I was the only person to get me through these years. Empathy, kindness, willingness to help others, and trust are traits I see in myself.”—Emma Cole

“If you ask my hubby, he’d tell you, ‘he can still be bitchy after 26 years.’”—Yancey Charles

“Living in the day.”—Barbara Wango