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.
Wear a gray t-shirt and look straight at the camera, he gives viewers close-ups of “rough spots” all over the body, including the face, arms, and abdomen. He also mentions “some of the more sensitive areas of mine, also tend to hurt the most.”
“It was so painful, I had to go to the doctor and take painkillers so I could go to sleep” he addedbefore listing other symptoms: sore throat, cough, fever, chills, night sweats, swollen lymph nodes.
In an age where people often use social media to showcase ideal versions of themselves, displaying one’s warts – or in Mr Ford’s case, a few of the “more 25” dark lesions on the body – perhaps unusual.
“The reason I said it,” he says in the video, “is mainly because I know there’s an outbreak of monkeypox going on, but another thing is knowing exactly what it means to my body. someone and especially what it means if it happens to a friend or to you. “
Silver Steele, 42, a Houston adult film actor, took to Twitter to share his personal and highly graphic story of monkeypox Diaryincluding an intimate selfie in July showing eight blueberry-sized sores clustered under his lip.
Also in July, Camille Seaton, 20, a gas station cashier in Smyrna, Ga., garnered more than 10 million views in a series of TikTok posts detailing her bout of smallpox . One of them begins with Miss Seaton covering her mouth with her hand as she says, “Warning activated.” Then, she revealed the lower part of her face covered with nearly a dozen ulcers.
Viewers responded with heart and thank you emojis, but the reaction wasn’t always positive. There are many conspiracy theories.
Jeffrey Todd, 44, a casting director in Los Angeles, made his monkeypox diagnosis public in late July, including a video in which he removed the bandages from his face to reveal a wound. purple. One commenter accused him of being an actor hired to shill for Pfizer.
Never mind that Tpoxx, the only drug prescribed to treat smallpox in monkeys, is manufactured by Technology Siga. (The drug is only approved for smallpox, being used off-label, and only in a thrifty way.) Brother Todd said his video was momentarily taken down by TikTok, but was restored when he did another video deal with the haters.
In certain ways, these videos recall the early days of AIDS, when women liked Elizabeth Glaser and Alison Gertz join activist Larry Kramer and artist Keith Haring as featured spokespeople for people living with HIV
Things to know about monkeypox virus
Things to know about monkeypox virus
What is monkeypox? Monkeypox is a virus similar to smallpox, but the symptoms are less severe. It was discovered in 1958, after an outbreak of disease in monkeys kept for research. The virus is mainly found in the regions of Central and West Africa, but it has recently spread to dozens of countries and infected tens of thousands of people, overwhelmingly those who have sex. homosexuality.
But its ability to draw attention to HIV and bring a human face to the disease is limited by an environment where outside gay opposition is much more socially acceptable than it is now and very little. platform exists to surpass the mainstream media.
The speed with which monkeypox sufferers stepped out of the dark felt both completely present and eerily familiar. Indeed, like AIDS activists before them, many of these monkeypox patients say they are going out in public to raise awareness and protest the government’s slow response.
Mr Steele said: “Forty years ago we had a virus and people were quiet and scared. “This time, fortunately it was not fatal, but I refused to be silent. I got angry. I feel like the Biden administration has dragged its feet.”
Vaccination appointments are nearly impossible to make, in part because government officials have waited weeks to place their orders, which makes not used in Denmark with its manufacturer, the Bavarian Nordic. Others have expired. On August 4, nearly two months after cases emerged in New York and Massachusetts, the Biden administration publicly announced monkeypox. health emergency. That comes almost two weeks after The World Health Organization has made the same statement.
“Why does it take so long to declare an emergency?” Mr. Steele said. “We could have diverted funds to speed up vaccine production and distribution, and I can’t help but see the parallels between AIDS and this. Gays are mostly affected, the world pulls on its feet, and then two kids get that and suddenly it’s a crisis. Why isn’t it a crisis when gay men have it? “
Todd, the Los Angeles casting director, says he is also motivated by what he sees as government inaction. “At first, I wouldn’t say anything,” he said. “What a shame, I was just going to deal with it and keep quiet.”
But when he showed symptoms in July, he went to the emergency room to get tested. Six days later, Mr. Todd was still undiagnosed and, after several calls, was told that the lab had thrown away his blood sample because it had been mishandled by the courier. “I feel like the medical community has really made me dry,” he said. “I feel like no one in the government is backing me.”
As he included it in a video: “Unfortunately, we are here alone. Now it is up to us to educate ourselves and be vigilant. “
Others want to dispel the myths and shame surrounding the disease that disproportionately affects men who have sex with men.
Maxim Sapozhnikov, 40, managing director of Fashion to Max, a creative services company in Milan, said: “I wanted to break this stigma, who started documenting the journey of smallpox in the country. his monkey. on Instagram in June.
But it was not easy to tell his family that he had contracted the disease. “I didn’t tell them anything until I got better,” Mr. Sapozhnikov said. “Actually, I blocked them on Instagram for about a week.”
Seaton, who in July was one of the first women in Georgia to test positive for monkeypox, wants to dispel the notion that women are immune. “Yes, most of the men got it,” she said in one of her videosS. But sex between men, she says, “isn’t the only way you can get it.”
Unable to work for nearly a month, Ms. Seaton set up a GoFundMe account, which has raised more than $17,000 and allowed her to pay rent and medical bills, though most of it. that will be reimbursed by insurance. “The support I get will fix the bad things that are happening,” she said.
However, some of her viewers speculated, without proof, that monkeypox was a hoax or that she contracted it because she was transgender. (Ms. Seaton isn’t transgender; she just wears her hair short.) In response, she posted a video from 2019 showing her in hospital after giving birth. “Be real,” she says, as the video shows her in the present day, standing in her living room. “That is my daughter.”
She went on to post videos warning that the virus would spread without more testing, vaccinations and education. There’s proof she might be right.
Nancy Nydam, director of communications for the Georgia department of public health, said that although 98% of last week’s 544 cases in the state were men, the six women who tested positive have all done so. in the past few weeks.
“It comes at a much more regular pace,” says Ms. Nydam.