Men and women with monkeypox share their stories on social media, to fight stigma and demand more action.
When Matt Ford, 30, an actor in Los Angeles, tested positive for monkeypox in June, he posted videos on Twitter and TikTok to show what it was like.
Wearing a gray T-shirt and staring directly into the camera, he offered viewers close-ups of the “gross spots” all over his body, including his face, arms, belly. He also mentioned “some in my more sensitive areas, which also tend to be the most painful.”
“So painful, I had to go to my doctor and get painkillers just to be able to go to sleep,” he added, before listing other symptoms: sore throat, cough, fever, chills, night sweats, swollen lymph nodes.
In a time when people often use social media to showcase idealized versions of themselves, displaying one’s warts — or in Mr. Ford’s case, several of the “more than 25” dark lesions on his body — was perhaps unusual.
“The reason I’m speaking out,” he said in the video, “is mainly because it’s one thing to know there’s a monkeypox outbreak happening, but it’s another to know exactly what it means for someone’s body and particularly what it means if it happens to a friend or to you.”
Silver Steele, 42, an adult film actor in Houston, used Twitter to share his highly graphic and personal monkeypox diary, including an intimate selfie in July that showed eight blueberry-size sores clustered under his lips.
Also in July, Camille Seaton, 20, a gas station cashier in Smyrna, Ga., racked up more than 10 million views in a series of TikTok posts that detailed her bout with monkeypox. One of them started with Ms. Seaton covering her mouth with a hand as she said, “Trigger warning.” Then she revealed the lower part of her face covered with nearly a dozen sores.
Viewers have responded with heart emojis and thank you’s, but reactions have not always been sympathetic. Conspiracy theories abound.
Jeffrey Todd, 44, a casting director in Los Angeles, went public with his monkeypox diagnosis in late July, including a video in which he removed a bandage from his face to reveal a purplish lesion. One commenter accused him of being an actor hired to shill for Pfizer.
Never mind that Tpoxx, the only drug that is being prescribed to treat monkeypox, is manufactured by Siga Technologies. (The drug, which is only approved for smallpox, is being used off-label, and only sparingly.) Mr. Todd said that his video was taken down momentarily by TikTok, but was restored when he made another video addressing the haters.
In certain ways, these videos recall the early days of AIDS, when women like Elizabeth Glaser and Alison Gertz joined the activist Larry Kramer and the artist Keith Haring as prominent spokespeople for those living with H.I.V.
What to Know About the Monkeypox Virus
What to Know About the Monkeypox Virus
What is monkeypox? Monkeypox is a virus similar to smallpox, but symptoms are less severe. It was discovered in 1958, after outbreaks occurred in monkeys kept for research. The virus was primarily found in parts of Central and West Africa, but recently it has spread to dozens of countries and infected tens of thousands of people, overwhelmingly men who have sex with men.
But the ability to draw attention to H.I.V. and bring a human face to the disease was limited by a climate where outward opposition to homosexuality was far more socially acceptable than it is now, and few platforms existed to circumvent the mainstream media.
The speed at which people with monkeypox have come out of the shadows has managed to feel both utterly of-the-moment and eerily familiar. Indeed, like AIDS activists before them, many of these monkeypox patients say they are going public to raise awareness and protest the government’s slow response.
“Forty years ago, we had a virus and people stayed silent and scared,” Mr. Steele said. “This time, it’s thankfully not fatal, but I refuse to be silent. I do have anger. I feel like the Biden administration has dragged its feet.”
Vaccine appointments have been nearly impossible to get, in part because government officials waited weeks to order shipments, which sat unused in Denmark with its manufacturer, Bavarian Nordic. Others expired. On Aug. 4, nearly two months after cases emerged in New York and Massachusetts, the Biden administration declared monkeypox a public health emergency. That came almost two weeks after the World Health Organization made a similar declaration.
“Why did it take this long to declare an emergency?” Mr. Steele said. “We could have diverted funds to accelerate vaccine production and distribution, and I can’t help but see parallels between AIDS and this. Gay men are primarily affected, the world drags its feet, and then two children get it and suddenly it’s a crisis. Why wasn’t it a crisis when gay men had it?”
Mr. Todd, the Los Angeles casting director, said that he, too, was motivated by what he perceived to be government inaction. “At first, I wasn’t going to say anything,” he said. “It was embarrassing, I was just going to deal with it and stay quiet.”
But when he became symptomatic in July, he went to the emergency room to get tested. Six days later, Mr. Todd was still without a diagnosis and, after repeated calls, was informed that the lab had thrown out his blood sample because it was mishandled by a courier. “I felt the medical community really left me out to dry,” he said. “I felt like no one in government had my back.”
As he put it in a video: “Unfortunately, we are on our own here. It now is up to us to educate ourselves and to be vigilant.”
Others want to dispel myths and shame around the disease, which has disproportionately affected men who have sex with men.
“I want to ruin the stigma,” said Maxim Sapozhnikov, 40, the chief executive of Fashion to Max, a creative services company in Milan, who began documenting his monkeypox journey on Instagram in June.
But that didn’t make it easy to tell his family he had contracted it. “I didn’t tell them anything until I got better,” Mr. Sapozhnikov said. “Actually, I blocked them on Instagram for about a week.”
Ms. Seaton, who in July was one of the first women in Georgia to test positive for monkeypox, wanted to dispel the notion that women are immune. “Yes, it’s mostly men who have gotten it,” she said in one of her videos. But sexual contact between men, she said, “is not the only way you can get it.”
Unable to go to work for nearly a month, Ms. Seaton set up a GoFundMe account, which has raised more than $17,000 and enabled her to pay her rent and medical bills, although much of those will be reimbursed by her insurance. “The support I’ve gotten overrides the bad stuff that’s been happening,” she said.
Still, some of her viewers have speculated, without proof, that monkeypox is a hoax or that she contracted the disease because she is transgender. (Ms. Seaton is not transgender; she merely has short hair.) In response, she posted a video from 2019 showing her in a hospital after giving birth. “Be for real,” she said, as the video cut back to her in the present day, standing in her living room. “That is my daughter.”
She continues to post videos warning that the virus will spread without more testing, vaccination and education. There is evidence she may be right.
Nancy Nydam, the communications director of the Georgia public health department, said that although 98 percent of the 544 cases last week in the state are among men, the six women who have tested positive all did so in the last couple of weeks.
“It’s coming at a much more regular cadence,” Ms. Nydam said.