When Matt Ford, 30, a Los Angeles actor, tested positive for monkey pox in June, he posted videos on Twitter and TikTok to show what it was like.
Wearing a gray T-shirt, he stared straight into the camera, offering viewers close-ups of the “coarse patches” all over his body, including his face, arms and stomach. He also mentioned “some in my more sensitive areas, which are also the most painful.”
“So painful I had to go to my doctor to get painkillers to sleep,” he added, before listing other symptoms: sore throat, cough, fever, chills, night sweats, swollen lymph nodes.
At a time when people often use social media to show off idealized versions of themselves, showing your warts — or in Mr. Ford’s case, several of the “more than 25” dark lesions on his body — may have been unusual.
“The reason I’m speaking out,” he said in the video, “is mainly because it’s one thing to know that a monkeypox outbreak is happening, but it’s quite another to know exactly what it means to one’s body and especially what it means when 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 monkey pox diaryincluding an intimate selfie in July with eight blueberry-sized sores under his lips.
Also in July, Camille Seaton, 20, a cashier at a gas station in Smyrna, Georgia, racked up more than 10 million views in a series of TikTok posts detailing her battle with monkeypox. One of them started with Ms. Seaton covering her mouth with one hand as she said, “Trigger warning.” Then she revealed the lower part of her face covered in nearly a dozen sores.
Viewers responded with heart emojis and thanks, but the responses weren’t always sympathetic. Conspiracy theories abound.
Jeffrey Todd, 44, a casting director in Los Angeles, released his monkey pox diagnosis in late July, including a video of him removing a bandage from his face to reveal a purplish lesion. A commentator accused him of being an actor hired to shill for Pfizer.
Never mind that Tpoxx, the only drug prescribed to treat monkey pox, is manufactured by Siga Technologies. (The drug, which is only approved for smallpox, is used off-label, and only sparingly.) Todd said his video was temporarily removed by TikTok, but was reinstated when he made another video addressing the haters.
In a way, these videos recall the early days of AIDS, when women like Elizabeth Glaser and Alison Gertz joined activist Larry Kramer and artist Keith Haring as prominent spokespersons for people living with HIV.
What you need to know about the Monkeypox virus?
What you need to know about the Monkeypox virus?
What is monkey pox? Monkeypox is a virus similar to smallpox, but the symptoms are less severe. It was discovered in 1958, after outbreaks occurred in monkeys kept for research. The virus was mainly found in parts of central and western Africa, but has recently spread to dozens of countries and has infected tens of thousands of people, mostly men who have sex with men.
But its ability to draw attention to HIV and give the disease a human face was limited by a climate in which outward opposition to homosexuality was much more socially acceptable than it is today, and there were few platforms to engage the mainstream media. to bypass.
The speed at which people with monkeypox have emerged from the shadows feels both utterly current and eerily familiar. Indeed, like AIDS activists before them, many of these monkeypox patients say they are going to the public to raise awareness and protest the government’s slow response.
“Forty years ago we had a virus and people were silent and scared,” Mr Steele said. “Fortunately this time it is not fatal, but I refuse to be silent. I have anger. I feel the Biden administration has dragged its feet.”
Vaccine appointments were nearly impossible, in part because government officials waited weeks to order shipments, which went unused in Denmark from the manufacturer, Bavarian Nordic. Others have expired. On August 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 issued a similar statement.
“Why did it take so long to declare a state of emergency?” said Mr Steele. “We could have diverted funds to speed up vaccine production and distribution, and I can’t help but see parallels between AIDS and this. Gays are especially affected, the world drags its feet, and then two kids get it and all of a sudden it’s a crisis. Why wasn’t it a crisis when gay men had it?”
mr. Todd, the Los Angeles casting director, said he too was motivated by what he considered to be government inaction. “At first I didn’t want to say anything,” he said. “It was embarrassing. I just wanted to deal with it and shut up.”
But when he developed symptoms in July, he went to the emergency room to get tested. Six days later, Mr. Todd still had no diagnosis and, after repeated phone calls, was told that the lab had discarded his blood sample because it had been mishandled by a courier. “I felt like the medical community was really drying me out,” he said. “I felt like no one in the government was behind me.”
As he put it in a video: “Unfortunately, we are on our own. It is now up to us to educate ourselves and be vigilant.”
Others want to dispel myths and shame surrounding the disease, which disproportionately affects 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 based in Milan that began documenting his monkey pox journey on Instagram in June.
But that didn’t make it easy to tell his family that he had contracted it. “I didn’t tell them anything until I got better,” said Mr. Sapozhnikov. “Actually, I blocked them on Instagram for about a week.”
Ms. Seaton, who in July became one of the first women in Georgia to test positive for monkey pox, wanted to dispel the notion that women are immune. “Yeah, it’s mostly men who got it,” she said in one of her videos. But sexual contact between men, she said, “isn’t the only way you can get it.”
Missed from work for nearly a month, she set up a GoFundMe account, which has raised more than $17,000 and has helped pay her rent and medical bills, although much of that will be covered by her insurance. “The support I’ve received outweighs the bad things that have happened,” she said.
Still, some of her viewers speculate, without evidence, that Monkeypox is a hoax or that she contracted the disease because she is transgender. (Mrs. Seaton is not transgender; she only has short hair.) In response, she posted a 2019 video showing her in a hospital after giving birth. “Be real,” she said, as the video went back to her in the present, as she stood in her living room. “That’s my daughter.”
She continues to post videos warning that the virus will spread without more testing, vaccination and education. There is evidence that she may be right.
Nancy Nydam, the communications director for Georgia’s public health department, said that while 98 percent of the 544 cases in the state last week were among men, the six women who tested positive have all done so in recent weeks.
“It’s getting on a much more regular rhythm,” Ms. Nydam said.
