A ‘virtual group photo’ for HIV Long-Term Survivors Awareness Day becomes a group discussion about life with HIV

To commemorate HIV Long-Term Survivors Awareness Day, Positively Aware organized a ‘virtual group photo’ of long-term survivors held on Zoom the weekend before the June 5 event. About 20 of us (myself, diagnosed in 1992, included) got together online.

“Being a long-term survivor has given me opportunities to laugh in the face of this disease, and to be a witness to those just finding out their status,” commented Andrena in the Zoom chat. “If you can laugh, you can live, you can survive.”

The idea for the photo op only came together a couple days earlier, and was promoted on Facebook, Instagram and Twitter. A U.K.-based HIV organization, the Terrence Higgins Trust (THT), also helped to spread the word. Five of the long-term survivors in the shoot were from England; another person who had heard about it from THT was from southern Spain. Essentially a Zoom meeting, the group photo was taken Saturday at what was noon in the eastern U.S., but already evening in Europe.

Wanda Brendle-Moss had thought to ask the group how many years they each have been living with HIV. Doing the math, she determined that we had a cumulative total of 630 years of living with HIV. The ten-minute photo shoot turned into an hour-long group discussion as everyone was then asked, What does being a long-term survivor of HIV mean to you?

“[It] has enabled me to be visible,” said Brendle-Moss.

From his home in London, Donald Hutera pondered the question. “What does it mean to me? Pride. That I exist in the flesh, and that I have learnt to be so much more open about my status after years of brushing-it-under-carpet shame (but getting on with life). I'm stronger and healthier at 66 than I think I ever was before. It feels good to be alive,” he said.

“Being an HIV survivor has a lot of issues for me—a lot of guilt and shame,” Jeff Olsen said, “but I am a survivor and am stronger than I ever thought I could be.”

Robert James, a survivor of 38 years pondered. “What does it mean to you to be a long-term survivor of HIV? Not being dead when so many friends I knew are.”

Another 38-year survivor, Mark Grantham said, “I like to think that I've become authentic, compassionate, honest, driven, grateful. I have found the fire in my belly.”

“As a long-term survivor, with all my trials and tribulations, I have learned that pain creates a resilience that only comes from struggle,” said New Yorker Lillibeth GonzaLez, a 31-year survivor. “I had to recreate my lifestyle and behavior in order to live with an AIDS diagnosis and THRIVE!”

Being a long-term survivor of HIV often means starting to address other conditions. “I think of myself as someone who’s ageing with HIV, now moving into other health areas as well—notably COPD,” said Paul Clift, from London. “I’m using my years of HIV experience and engagement to good effect across other health issues, helping educate patients in treatment development here in UK and across Europe.”

“I have had to acquire a high level of knowledge about what affects me and to require a partnership with my medical providers, as opposed to being issued orders,” said David Philips.

“Every day is a gift,” said Princess Dallas Lyle. “My first doctor, in the ’90s, told me I had 10–12 years. I am grateful the doctor was wrong! Going on 26 years strong. We are warriors!”

Reflecting on her 33 years of living with HIV, Lexi Davis said, “[It’s] a testament to my strength of character.”

Advocacy plays a major role in the lives of many of these survivors. “Giving hope to the newly-diagnosed and a vision for a long happy life,” said Jax Kelly, a 17-year survivor living in Palm Springs.

“I have been able to empower and help others over the years while living my best life gratefully at 65 years old,” said Nancy Duncan, a survivor of 38 years.

“Being a long-term survivor is a very serious thing to me as I'm fighting for heterosexual men living with HIV,” Derek said. “I've been fighting for decades and have no plans to stop anytime soon.”

“For me, from the depths of despair to the present time has been an amazing, positive journey,” said Maurice Greenham, who as a 39-year survivor, has been living with HIV nearly half his life. “I’ve become a community leader, a health champion and a respected local musician. All because I’m a long-term survivor of HIV.”

Many commented on how much they had enjoyed the post-photo conversation. From Grenada, Spain, Cherynne Carayan had been watching a television soccer match from England but turned off the TV to take part in the group photo.

“This was worth missing the last 15 minutes of the FA [Football Association] football game,” she said.

Posts about HIV Long-Term Survivors Awareness Day are also tagged with #HLTSAD. Look for the hashtag #imstillhere to find social media posts about the group photo.