Lilly Simon, a 33-year-old woman from Brooklyn, does not have monkeypox. She has neurofibromatosis type 1, a genetic condition that causes tumors to grow on her nerve endings. Those tumors were surreptitiously filmed by a TikTok user while Ms Simon was riding the subway on a Thursday in late July during her commute.
In the video, Ms. Simon is sitting on the train wearing shorts, a T-shirt, and a leaf-print mask. She is looking at her cell phone, unaware that she is being recorded.
The video was later posted on TikTok with a monkey emoji and a question mark at the top, which seems to indicate that Ms. Simon could be riding the subway with an active case of monkeypox, the virus recently reported. declared a global health emergency by the World Health Organization. .
A few days later, Mrs. Simon’s sister called her. She had seen the video. “Some of her friends came up to her,” Simon said. She said the news hit her “like a pile of bricks.”
“I’m not new to people being mean to the condition,” said Ms. Simon, who is a project manager and used to work for The New York Times School, an educational program that is part of The New York Times. YorkTimes. Company. “I’ve had it since I was a kid.” She said that with the recent spike in monkeypox cases, she had thought something like this was “inevitable.”
One of the common symptoms of monkeypox is a painful rash that develops into raised pustules that eventually crust over and fall off as the virus runs its course. While most people who get the virus will develop pustules, experts say there may be a single lesion or the pustules may be located on a person’s genitals.
In the TikTok video, the videographer zooms in on Ms Simon’s arms, legs and ankles, where her small tumors appear as bumps on the skin. When she was a child, Ms. Simon said that she was called a “leper” and that her elementary school classmates joked that she had smallpox.
Initially he weighed whether to answer or not. “My heart dropped and suddenly I had to decide,” said Ms Simon. “Do I fight against it? There’s no way to hide that it’s me. Or I, like, how should I respond to that?
Finally, he decided to join his response to the initial video. (On TikTok, stitching a video means adding your new video to an existing clip in the app. In this case, viewers get to see a few seconds of the original subway video before Ms. Simon appears on screen and tells the whole story.) history).
“I wouldn’t let something like that go by,” Ms. Simon said of her choice. “I can’t seem like a coward, and I’d rather defend myself than just let it go.”
What to know about the monkeypox virus
What is monkeypox? 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 found mainly in parts of central and western Africa, but in recent weeks it has spread to dozens of countries and infected tens of thousands of people, mostly men who have sex with men. On July 23, the World Health Organization declared monkeypox a global health emergency.
“The tumors are benign, but they are still all over my skin and they cause me a lot of health complications, both physical and mental,” says Ms. Simon in her video. Speaking to The New York Times, Ms. Simon added that she was diagnosed at the age of 8, she has undergone multiple surgeries and has tumors growing in her brain and eyes. There is currently no cure for neurofibromatosis type 1. She is not contagious.
Ms Simon said those complications also include scoliosis, which she was able to “control” through activities such as yoga, sports and stretching, and various tumors growing inside her ears, affecting her hearing.
The growths can be itchy and painful, and you often need regular visits to your doctors. “Dealing with the general public has caused a kind of anxiety and depression and a little bit of post-traumatic stress disorder, and this situation definitely didn’t help,” said Ms Simon, noting that she has “a lot of mild version” and is in the “early stages” of the condition.
“I will not let any of you reverse the years of therapy and healing that I had to endure to deal with the condition and of course to exist surrounded by people like you,” she says on her TikTok. Ms. Simon said that she chose to use “buzzwords” to make her situation relatable. “I knew people will resonate with that no matter what they’re going through.,” she said.
His response video has been viewed over a million times on TikTok. The original TikTok video has since been removed, but not before it racked up a significant number of views. (It’s unclear if the original video was removed by TikTok or the original poster.)
Social media platforms like TikTok are a kind of Hydra. Cut off one head and three more grow back. Or, in this case, delete a video and multiple republished versions will appear in its place.
Before its removal, the original video initially had comments turned on, meaning anyone with a TikTok account could comment on the video. The comments, Simon said, ranged from genuine concern to threats of physical violence against her. TikTok did not respond to a request for comment for this article.
It’s legal to shoot videos like Simon’s, said Mickey Osterreicher, general counsel for the National Association of Press Photographers. “When you are in public, there is no reasonable expectation of privacy. That’s how we distinguish, you know, what’s public and what’s private,” he said. “When you’re at home, that’s when you have the highest expectation of privacy.”
He noted that privacy laws vary by state, emphasizing that New York “probably has less privacy than other states depending on what you’re shooting for.”
However, what a person does with a recording after taking it can change the situation. “What I tell people all the time is that it’s a whole different package of rights when you use an image and do something that could be defamatory or show someone in a false light,” Osterreicher said.
“I think, you know, the fact that this person recorded it, it was cool,” he said. “But what they did with it afterwards, she could have a very strong cause of action against that person for doing what they did.”
Having monkeypox, or even believing you have monkeypox, can take an emotional toll. “People are afraid of being associated with them because of social stigma, ostracism, and assumptions about their sexual or intimate lives,” said Alexander Borsa, a doctoral student in sociomedical sciences at Columbia University and a researcher at the Science Laboratory. Harvard Gender. Mr. Borsa was also part of a New York City Department of Health and Mental Hygiene task force dealing with monkeypox.
Mr. Borsa highlighted how some TikTok videos, such as those of people talking in detail about what it’s like to have monkeypox, could be a positive use of the app. But he also noted that it was not surprising to see the platform set up in this way, as many LGBTQ people seek advice and treatment information online.
For now, at least, Ms. Simon’s response video is the one demanding the attention of TikTok’s fickle algorithm, and she’s since heard from several strangers whose lives have also been affected by neurofibromatosis type 1.
“Honestly, I don’t think I would have pushed myself in that way to find those people any other way. It’s isolating, and there’s not a lot of people to talk to about it, especially, like, you know, in front of me, at least, or at least in my community and in the places, the spaces that I occupy.” Mrs. Simon said of her condition. “I don’t really even talk to my friends about it. So again, for these strangers out of nowhere, it felt… that part felt right.”
To send a direct message on TikTok, both parties must follow each other. The person who posted the original video has since followed her TikTok account, Simon said, but she’s not interested in reciprocating. “I would have said exactly what I said in the video,” Simon said of the two’s possible connection.