Rachel Hatzipanagos
In the first video, Zachary Willmore is sitting in his childhood bedroom wearing a pink jersey, his blond hair swooshed to the side, and begins applying make-up.
“Yesterday I found out that I got diagnosed with HIV,” Willmore says in the 48-second TikTok video. “I’m not posting this until I feel completely ready because honestly I’m worried about people looking at me as untouchable. But people keep giving me hugs.”
Willmore, a 19-year-old freshman at San Diego State University, says he spent his winter break suffering from flu-like symptoms including fever, chills and nausea.
He took tests for the coronavirus, flu and STDs “just to be sure”.
The test results were all negative, except for one.
“They don't put HIV on the results list,” Willmore said. “So they called me in.“
When his doctor explained his diagnosis on February 16, “it felt like the world was ending,” Willmore said in an interview. “I just wanted to drain all the blood out of my body.”
HIV remains a stigmatised and misunderstood disease. But over the past month, Willmore has taken his 1.8 million followers on a journey through his fears, confusion and ultimate acceptance of his illness in a series of more than 20 videos.
In some, he is as cheerful as ever, applying make-up and chronicling a shopping trip to Zara with his mother. In others, he’s diving into the details about medication and urging followers to wear condoms.
One of his most popular posts - an eight-second long video of Willmore staring off into the distance with the words “What it felt like after getting diagnosed with HIV and having to go back to class like nothing happened” - has been viewed over 15 million times.
@zachwillmore Thank you guys for all the support❤️ #hiv #gay #viral ♬ Here with Me (Live) - Rizal Fahmi
“When I do my videos in my lighthearted way it’s because I’m feeling happy,” Willmore told The Post. “I think it’s important to shed light on how it’s not just sad parts. ... I'm still living my life. This disease doesn’t define who you are."
Willmore says most of his encouragement comes from his followers, including some who shared that they had been living with the disease for decades.
“That was just really powerful for me because it gave me a broader perspective on the world,” Willmore said.
There are a few critics too who say he is taking the disease too lightly. Podcast host Elijah Schaffer tweeted to his 600 000 followers about Willmore: “Bro thinks HIV is cute and makes him unique. Gen Z is so confused.”
That type of criticism is based on “not being knowledgeable on the subject and not understanding why it's important”, Willmore says.
After receiving his diagnosis, Willmore immediately called his parents and decided to fly home.
“I’ve always told my mom everything specifically, and I knew that she would just want the best for me and want me to be safe,” Willmore said.
Leila Willmore was sitting hundreds of kilometres away in her Missouri home when she received the call.
“It was initially devastating. My heart and my stomach sank. But I also had a feeling of, is that really true? Are we sure that’s the case?” she said.
Leila told her son: “I feel like there' nothing he can’t handle.”
Standing nearby, Willmore’s father, Theodore, overheard the conversation.
“Her voice was tight,” Theodore recalled. When she hang up, “she said, ‘I have life-changing news.’”
There are 1.2 million people living with HIV in the US and there were more than 35 000 new infections in 2020, according to Centers for Disease Control and Prevention data.
Young gay and bisexual men accounted for 84% of all new HIV diagnoses in people aged 13 to 24 in 2020, the CDC reports.
Willmore knew little about the disease when he was diagnosed. “I was told people with HIV can live up to 70 but I don’t even want to live past 20,” he said in one video.
His father, an emergency room physician, began by helping put the treatment options into perspective.
“Forty years ago it was a death sentence and now it’s a chronic treatable condition, which is fantastic,” Theodore said. “But it still requires a young man to be very attentive and take medicine every single day.”
HIV-related mortality rates peaked in 1995 and have declined significantly.
Yet the stigma surrounding HIV remains for many, said Lawrence Yang, a professor of social and behavioural science at New York University, who has studied stigma reduction for health conditions for about 25 years.
“In order for stigma change to occur on a societal level, we need more people sharing their stories,” Yang said.
In a March 1 video viewed 58 500 times, Willmore explained to his viewers that his treatment is “very simple”. He takes one pill a day at 11 am. In a few months, he may be able to take a shot instead of a pill.
“Today was the longest day ever, my appointment started at 11 and lasted until 4, but I am medicated!” he said. “Also there was a lot of good news at this meeting. So a high viral load would be in the millions and I have a viral load of 11 400."
A few days later, he told subscribers that he was feeling better. His cough had dissipated and swollen lymph nodes were going down.
“I feel like I have just more energy in general,” Willmore said in the March 5 video.
Before his diagnosis, Willmore’s TikTok was filled with posts about his daily life as a college student, and rushing a fraternity.
Turning the attention to his HIV status had been difficult, he said, but was an important part of educating the public about the disease.
This is the same young man who told his classmates he was gay through a PowerPoint presentation during his social studies class in the seventh grade, his mother remembers.
She told him at the time, “People are gonna want to know why you’re telling them this.
And he said: “Because I think it’s stupid to lie about who I am, and I don’t want my friends to have to lie for me.”
“He has always been in control of his narrative,” Leila said.
In early April, Willmore reached a new milestone. The virus was no longer detectable in his blood.
“I’m so excited ... this is a huge accomplishment for me even though I didn’t really do anything,” Willmore said in a video. “I just feel good today, it’s a great day.”
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