Long-Term realness
Rick Guasco

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

We asked our followers on Facebook, Instagram, and Twitter. They served up some honest feelings and experiences

“Good timing and luck were certainly strong factors in my survival. I tested HIV positive in 1986. I refused to take any medications until I developed full-blown AIDS in 1996, just as the life-saving cocktail came out.” —Rick Hall

“26 years this June. Long-term survivors tend to be those who are skilled at filtering out good advice from bad. They also tend to be good at asking for help, and willing to advocate for themselves.” —Mark Janes

“As a 32-year survivor, I think being resilient is one of the main things long-term survivors have in common. We have had to bounce back from grief, medication side effects, stigma, opportunistic infections, depression, and many more things thrown at us daily by being a long-term survivor of HIV.” —Larry Frampton

“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

“Living in the day.” —Barbara Wango

“A long-term survivor learns to adapt to an ever-changing environment. A long-term survivor is compassionate and fierce, dedicated and bold. A long-term survivor is one who lived through the devastation and loss during the height of the AIDS pandemic, generally before the advent of protease inhibitors.

“And a long-term survivor doesn’t always have to be someone who carries the virus. There are thousands upon thousands of HIV-negative long-term survivors as well who suffered through the very same devastation and loss.” —Paul Aguilar

“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 US.

“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 has lived more than five years with HIV. Someone who has been through the AIDS diagnose and is still here. Those that were on the first drugs for HIV and are still here. I know this is a simple, brief explanation of LTS though I feel it’s accurate. Though there are so many reasons that define a long-time survivor.” —Kate Elling

“Diagnosed as HIV+ 35 years ago this month. Having a positive attitude about an HIV/AIDS diagnosis. Taking direction from your doctor and making sure to take meds consistently. I give no other energy to HIV. I live my life to the fullest and I choose to be happy, upbeat, and even though I sometimes may not have the energy, I push through because I choose to.” —Rick Angiollo

“A survivor since 1990. Knowledge is power. Not only surviving but thriving. Giving back, encouraging and uplifting others.” —Terry J. Lapierre-McGuire

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

“Being resilient is important, along with your frame of reference. This is not a death sentence as I was told in 1985. I have learned it is a manageable, chronic infection. Now, how you manage it is the important thing.” —Fred Pardo

“I describe us as soldiers coming back from a horrific war that many of us are still battling! We are warriors and we have seen much devastation that has affected our mental health somewhat.” —Maria HIV Mejia

“For me, a longtime survivor is someone who’s compass is forever pointing towards quality of life! One looks into one’s heart and asks what makes “me” happy right now; one who is mindfully aware at all times; one who embraces Positive Living and one who learns the tremendous benefits of feeling a sense of gratitude, most especially towards others, while also remembering those less fortunate than I right now!” —James O’Connor

“Love, supportive family and friends, a positive attitude, self-care, good eating, lots of sleep, keeping your appointments and taking your medications, give back to community by joining CABS, CACs, and working if you can. Love yourself. I’m HIV+ 31 years, undetectable, and I’m 68.” —Patricia McNeill Shelton

“As my U=U T-shirt says, you need to be: Undestroyable, Undefeatable, and Undeterrable.” —Ant Babajee

“I’ve been a survivor since 2005, almost 16 years. A positive attitude and outlook are what’s kept me alive. Winston Churchill had it right, “never, never never never never never give up!’ ” —Charles Littleton

“For me, diagnosed on 6/12/1984, a determination to live, an inquisitive manner, being a curmudgeon and positive attitude towards life all contributed to me still being here. As Elaine Stritch sang in Follies, ‘I’m Still Here!’ ” —Mark L Grantham

“For me, it has been my quizzical survival since my diagnosis around 1986-89; both because of myself and in spite of myself...I have done everything wrong and everything right at all the different stages of living with this virus. In spite of all the crazy things I have been through, I am still here.” —John Okruta

“Additional benefits: Living long enough to see grandchildren become adults! Priceless joy!” —Trina Jones

“Lonely.” —Doug Mc Donald

“Strength.” —Kenneth Garaty

“Resilience.” —Kim Samson

“Luck.” —Gee Poz

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

“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