Community Responses: How Long Can You Live with HIV?

Too often, the media gets it wrong. The reality of HIV is often portrayed as a diagnosis that ends life immediately—but this could not be farther from the truth.

Today, in fact, many people with an HIV diagnosis are doing what was once thought to be impossible: they are thriving in daily life, decades after learning they were positive.

Advancements in antiretroviral therapy (ART) are helping people stay healthy, active, and often symptom-free. Although ART is not a cure, effective treatment saves lives and additionally prevents the transmission of HIV through U=U (Undetectable = Untransmittable).

What has your treatment journey been like?

To find out what living with HIV looks like for the community at large, specifically, we reached out on the H-I-V.net Facebook community, asking: “How long can a person live with HIV?” The response was overwhelming. Hundreds of you reacted and shared your stories. Here’s what you had to say.

How long can you live with HIV?

Remarkably, many of you are staying healthy 30 years or more since learning of your positive status. Those of you who have been managing life with HIV for 30+ years show no signs of sickness or slowing down but, on the contrary, are enjoying life and still have much to look forward to.

"I have been living for over 30 years beyond my diagnosis. I am 53 years old and I have been living with HIV for more than half of my life."

"I’ve been positive for over 30 years and I credit my health to staying on top of my treatment plan. Taking my one pill a day is just a small part of my morning routine now—it’s what has allowed me to maintain a happy, healthy life for decades."

"It is so uplifting to read all these comments. I have been positive 32 years. Many times I have found it is not yet my last breath yet. I have whiplash from moving from despair to gratitude so often. Today I am grateful and optimistic at 58."

Another member shared: "I am going on 64 here. I was diagnosed at 29. I am thankful to still be here to carry on for all those who were not able to be here to do so."

"I have been positive for 37 years. I am 65 years old."

One community member noted: "I have been living with HIV for 20 years."

"Harry my husband is 38 years in now with HIV. He has been on meds for about 18 years. He has some permanent deficits from starting (meds) a bit late but he is still going strong."

Finally, another added: "I have been living with HIV for 20 years and am going strong."

How does HIV impact everyone differently?

This diagnosis affects every person differently. There are many in the community who shared that their course with HIV is not what they feared. In other words, they are living long lives, and modern medications have made the symptoms they experience are not anywhere near as devastating as they first thought they would be.

"Once I started Biktarvy it was a total game changer for me. Knowing I can't pass the virus (U=U!) on gives me a sense of freedom I never thought I’d have."

"I found out on my birthday in 1993. So I am going into my 27th year with HIV. I have been asymptomatic the entire time. Looking forward to being around many more healthy years."

"In 2020 I will be 38 years positive, and I am 62. I consider myself part of the first wave that hit New York City in the very early 80s when I was in my early 20s, and I am here to tell you I have never suffered a day from HIV, unlike my two best friends who died right away and dozens more who suffered unimaginably. I do not know why I was spared."

Can you live longer than doctors expect?

Several of you shared that it has been a blessing how wrong the doctors were. For instance, A few of you were told by doctors that you did not have long to live, and that has not turned out to be the case at all. You beat the odds by decades thanks to modern treatment.

"I tested positive with very advanced AIDS in 1994 and was given 6 months to a year to live. I am still here after 25 years and work full time. Life is good."

How has living with HIV impacted you?

We want to say thank you to everyone in the community who shared. You give so much hope and encouragement to us all, so thank you.