HIV Long-Term Survivor Community Stories

"I want to say don't ever feel like you are alone because I was once there. There is a community of people who love you and can help you with whatever you are going through." – Dee

At H-I-V.net, we reflect on history by hearing the stories of those living with HIV for several decades, commonly known as Long-Term Survivors.

June 5 is Long-Term Survivors Awareness Day, a day to recognize their needs and experiences. Based on questions from H-I-V.net moderator Khafre, our community members shared with us the stories of their initial diagnosis, early treatments, and how they have navigated health and relationships over the past few decades.¹

What does being a long-term survivor mean to you?

"Being a long-term survivor means that I have beared witness to the legacy, strength, and commitment of so many brave people living with HIV. It means that I have witnessed the advances in biomedical changes which we all benefit from today. It means that I can look back on my decisions and say, well done." – Khafre, diagnosed in 1989

"It is kind of like a survivor badge of courage and strength for me. I really think for some long-term survivors like me we have gone through hell over the years with AIDS-related complications and we are lucky to have survived, so I am proud I have fought like hell to be still alive." – Larry, diagnosed in 1989

"I still can’t believe I have made it this long and I appreciate life." – Leo, diagnosed in 1986

"First I want to say we are all very blessed and I am grateful to be here today. I am now aging with HIV and that scares me because does anyone really know all the effects of having a virus in your body for so long along with taking ARVs for 20-25 years and longer? All I know is that I made it through the toughest thing in my life that I thought would take my life and I watched my daughter become a woman, had a daughter who was born negative (now she's 20 years old), and I lived to see my beautiful granddaughter." – Dee, diagnosed in 1997

"It means I’ve been granted the time that was denied others. That time I need to use to do good things in this world. Or just waste it watching clouds in the sky. It means that I not only get to but MUST savor my life." – Robert, diagnosed in 1994

Who was the first person you disclosed your status to?

"I first disclosed to my girlfriend. I went to get tested because I wanted to ask her to marry me. After disclosure, I told her she should go about her way. She said she loved me and we got pregnant and married. She delivered our son and both remained HIV negative." – Khafre

"I disclosed this to my sister who was 5 years older than me. It wasn't hard because we were so close. I was scared to get the words out and the pain I felt while telling her was something I can't forget. We cried together, and then called my other 2 sisters and mother." – Dee

"The first person I told was my now-deceased partner. We were together for 6 years at the time. He seroconverted in the first few months that we started dating and never told me. Somehow I told him without blame in my heart. Only forgiveness." – Robert

What is it like to have made it through early HIV treatments?

"The earliest treatments were problematic in so many different ways. I refused to take AZT at my doctor's request. At this point, I had heard too many war stories. I didn't begin taking medication until 1998." – Khafre

"The uncertainty of the diagnosis back in 1989 was pretty grim and the early medications like AZT were brutal on the body and the side effects were rough on the body. Once the newer meds came along they were much more tolerable." – Larry

"I lost a gallbladder and almost went on dialysis with Crixivan. There were so many pills. When I chose not to continue, I was told I was going to die if I didn’t try something. Others around me were dying all the time with AZT, which worked for about a year, and then they couldn’t even find a T cell in those people who took it. At that time I had AIDS with a 40 T cell count but I stayed alive until better drugs were available. I feel the FDA let us down. I know we were desperate, but we were treated as lab rats." – Leo

"The early treatment of AZTs was killing people but protease inhibitors came out December 1995, a year and a half before I found I was living with HIV and people were now taking these medications instead of AZTs. I was always sick. There wasn't a day that I felt like myself at all. Imagine all day having a headache, being nauseated, mouth dry, tongue numb, vomiting, and having to still get up for work and take care of your child with no help at all (that's how I felt)." – Dee

"I look back on those early days. People having waking nightmares and hallucinations from AZT. I started therapy right after reports of DDI and D4T showing the best results for viral reduction. Unfortunately, it gave me crippling neuropathy in my feet that has improved over the years but still experience a tingle in my toes. That’s been there since 1995." – Robert

What has helped you when dealing with misunderstanding or judgment from family and friends?

"What helped me was to stand in my truth. Disclosure of my HIV status also came with disclosing that I am a Bisexual man. The longer I have stood in my truth, the longer the time given my family and friends to stand next to me." – Khafre

"For me, I have always been very 'in your face' and explain the facts of the diseases. Anyone who places judgment on me, that is their problem if they don’t want to learn the facts about HIV." – Larry

"I did go to group meetings. It didn't help, it was sad." – Leo

"I had to remember that no one was educated about HIV/AIDS, not even me, and that once I learned about what I was living with, it was my job to educate the people around me, and if there was someone who decided to not be around me then that was their choice. I had to move on with my life and not let what they thought affect me." – Dee

"Luckily everyone has fully embraced my status. Only one person told me I would never be loved again. And they were very, very wrong." – Robert

Are you a long-term survivor and would like to share your story?