Robert Garofalo was diagnosed with HIV in 2010 after a “series of consecutive, unfortunate events,” and then struggled through some of the darkest moments in his life. Garofalo had been diagnosed with cancer a few years prior, had split up with his partner of 10 years and was violently assaulted.
“It was amazing that I was able to keep my life moving forward,” he remembered. “I fell into this dangerous, bad place, and I wasn’t sure I would be able to keep going.”
Garofalo, MD, MPH, is a respected clinician and researcher in Chicago. He’s the head of adolescent medicine at the Ann & Robert H. Lurie Children’s Hospital—a dedicated provider who cares deeply for the LGBT and HIV-positive young people he serves. He is also an accomplished researcher, with more than 60 articles published in peer-reviewed journals. Struggling with a new diagnosis, he felt trapped—and unwilling to disclose his new status out of fear that stigma and discrimination might irrevocably damage his career and personal relationships.
But Garofalo found Fred. And Fred saved his life.
Fred isn’t an infectious disease specialist, a psychotherapist or a fellow friend living with HIV. Fred is a 10-pound Yorkshire terrier puppy, who Garofalo found online.
“By not being anything other than being a bundle of positive energy, Fred gave me peace and joy—which I thought might be gone from my life forever.”
Garofalo was able to stabilize his life and heal from his trauma because of Fred. He felt compelled to pay tribute to the healing he was able to achieve, and drew from his position in the community to establish a charity organization benefitting HIV-positive young people.
Fred Says was born. In 2014 and 2015, it gifted about $125,000 to organizations across the U.S. that serve young people with HIV. Some of the organizations use the money to help pay for clinicians, medications, food, and other resources they need to serve their clients. Others use the funds more creatively.
“I got a note from a young person in L.A. who thanked me for helping to buy a new pair of sneakers. He’d been walking around in shoes that didn’t fit him—and the money from Fred Says enabled this person to buy a new pair. Little things like that can sometimes make a big difference in a person’s life.”
However, a year after establishing Fred Says, Garofalo had not publicly revealed his status. It took him about a year, he says, to allow his HIV status to be part of the Fred Says narrative.
“I remember sitting around with a friend one day, who said, ‘Isn’t it weird that you have a charity that’s trying to help young people with HIV and you can’t even be honest about your own status?’ I had to take a step back, and thought, ‘That’s spot on.’”
Stigma, he says, was the primary reason he delayed telling others about his diagnosis. He had cancer a few years prior to being diagnosed with HIV, and it never occurred to him to not tell anyone about his cancer diagnosis because he knew that family, friends and colleagues would rally around him with support and love.
“But HIV is different. All of those assumptions flew out the window. The dynamic changed. I had to think about who to tell—the assumption that I’d receive love and support from family and friends was no longer an assumption, it was a question. It was kind of like being closeted as a gay man, because you’re afraid of who’s going to be supportive and who’s not. I was living in this self-imposed isolation because I was afraid to tell people what I was going through.”
Garofalo received more support from people in his life after he opened up about his status than he anticipated. “I think that’s true for probably a lot of people—but it doesn’t make those fears any less real. The stigma is real. Especially for people who are marginalized—for people who don’t have a stable job, or lots of friends, or a partner, coming out about HIV has not been an easy thing, and it’s still not an easy thing 30 years into the epidemic,” he said.
To give people a meaningful way to talk about their HIV status, Garofalo began a photo essay project for people with HIV who have support from four-legged friends. The photo essay project, called When Dogs Heal, resonated with the community.
“In 24 hours, I had over 300 emails from people all over the world with stories about them and their dogs. It transcended HIV, and even included people with conditions like depression and cancer.”
Garofalo and a two colleagues, writer Zach Stafford and pet photographer Jesse Freidin, travelled to 5 U.S. cities—including San Francisco—to take pictures of people with the pets who changed their lives. They interviewed participants and wrote accompanying narratives for each photo in the exhibit. The exhibit launched in New York City and Chicago on World AIDS Day last December.
“The AP [Associated Press] ran a story about it. I’ve published a lot of academic articles and they haven’t had one-one thousandth of the reach of this one project. I think it resonated with people because it changed the narrative of people with HIV from one of death, dying and illness to one that is about survival, love and hope.”
Get support for social and emotional aspects of living with HIV through the San Francisco AIDS Foundation program Positive Force, or by visiting the new health and wellness center, Strut.
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