Lilly Simon, 33, of Brooklyn, did not have monkeypox. He has neurofibromatosis type 1, a genetic disorder that causes tumors in his nerve endings. These videos were secretly captured by a TikTok user. Simon was walking on the subway on a Thursday in late July.
In the video, Ms. Simon sits on the train wearing shorts, a t-shirt and a leaf-patterned mask. He is looking at his phone, not knowing that he is being recorded.
The video was later posted on TikTok with a monkey emoji and a question mark superimposed on it. Simon may have contracted monkeypox on the subway, a virus recently declared a global health emergency by the World Health Organization.
A few days later, Mrs. Simon’s sister called him. He watched the video. “Some of his friends approached him,” the lady said. Simon said. According to him, this news hit him “like a pile of bricks”.
“I’m not new to the human condition,” said the lady. Simon is a project manager and has worked at the School of Education program, part of The New York Times Company. “I’ve been getting it since I was a kid.” He said he thought something like this was “inevitable” because of the recent spike in cases of monkeypox.
One of the common symptoms of monkeypox is a painful rash that turns into raised pustules that eventually scab over and fall off as the virus runs its course. Most people infected with the virus may develop pustules, but experts say there may be only one sore or pustules localized to a person’s genitals.
The person recording in the TikTok video raises the lady. On Simon’s hands, feet and ankles, his small tumors appear as raised bumps on his skin. As a child, Mrs. According to Simon, he was called a “leper” and his primary school classmates joked that he had smallpox.
At first he thought about whether to answer. “I was heartbroken and suddenly had to make a decision,” Ms. Simon said. “Do I fight him? There is no hiding that it is me. Or how should I answer him?’
Finally, he decided to respond to the initial video. (In TikTok, stitching a video means adding your new video to an existing clip in the app. In this case, viewers can watch a few seconds of the original subway video before Ms. Simon comes on screen and tells the whole story.)
“I wouldn’t let that happen,” said the lady. Simon spoke about his choice. “I don’t look like a coward and I’d rather stand up for myself than just let it go.”
What you need to know about monkeypox virus
What is monkey pox? Monkeypox is a virus similar to chickenpox, but the symptoms are less severe. It was discovered in 1958 after the disease appeared in monkeys kept for research. The virus was found mainly in parts of Central and West Africa, but in recent weeks it has spread to dozens of countries, infecting 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 not good, but they are still on my skin and cause many health problems, both physical and mental,” Ms. Simon says in his video. In an interview with The New York Times, Mrs. Simon added that he was diagnosed at the age of 8, had several surgeries, and had tumors in his brain and eyes. There is currently no cure for neurofibromatosis type 1. It is not contagious.
Ms. Among those challenges, Simon says, are scoliosis, which is “controlled” through activities such as yoga, sports and stretching, and multiple tumors growing inside her ear that affect her hearing.
The tumors are itchy and painful, and she needs regular visits to doctors. “Dealing with the general public has caused some anxiety, depression and a bit of PTSD, and the situation hasn’t helped at all,” said Ms. Simon noted that there is a “mild version” and that the condition is in the “early stages”.
“I won’t let any of you undo years of therapy and recovery to fight the disease and of course to be around people like you,” she says on her TikTok. Ms. Simon said he chose to use “words” to express his plight. “I knew that no matter what people were going through, it would resonate,” he said.
His response video has been viewed more than a million times on TikTok. The original TikTok video has since been taken down, but not before it had racked up a significant number of views. (It’s unclear whether the original video was removed by TikTok or the original poster.)
Social media platforms like TikTok are like Hydra. Cut off one head and three grow back. Or in this case, delete a video and multiple reposted versions will appear in its place.
Before it was removed, the original video had commenting enabled, meaning anyone with a TikTok account could rate the video. Comments, Ms. According to Simone, everything from being really worried to threatening to physically abuse her. TikTok did not respond to a request for comment for this article.
It’s great to record videos like a lady. Simon, said Mickey Osterreicher, general counsel for the National Association of Press Artists. “You can’t expect privacy when you’re in public. You know, we distinguish between what is public and what is private,” he said. “When you’re at home, you expect privacy the most.”
He noted that privacy laws vary by state, noting that New York “might have less privacy than other states depending on what you’re shooting for.”
What a person does with a recording after receiving it, however, can change the situation. “What I always tell people is that when you use an image and you do something that defames someone or defames someone, it’s a whole different set of rights,” he said. Osterreicher said.
“I think, you know, it was good that this person recorded it,” he said. “But what they do with it later on is that they may have a valid reason to take action against that person for doing what they did.”
Getting monkeypox, or even believing you have monkeypox, can be emotionally tolling. “People are afraid to associate it with them because of social stigma, exclusion, and assumptions about their sexuality or intimate life,” says Alexander Borsa, a doctoral student in sociomedical sciences at Columbia University and a researcher at the Harvard GenderSci Lab. Mr. Borsa was also a member of the New York City Department of Health and Mental Hygiene’s monkeypox task force.
Mr. Borsa highlighted how some TikTok videos, such as those in which people talk in detail about what monkeypox looks like, can be a positive use of the app. But he also noted that it’s not surprising to see the platform weaponized in this way, as many LGBTQ people seek guidance and treatment information online.
For now, at least, ma’am. Simon’s response video is one that called attention to TikTok’s changing algorithm, and since then he’s heard from a number of strangers with neurofibromatosis type 1.
“I don’t think I would have honestly ever put myself out there to find people like that. It’s isolating and there’s not a lot of people to talk to about it, especially, you know, in front of me, at least, or at least in my community and the spaces that I occupy. Ms. Simon spoke about his condition. “I don’t even talk about it with my friends. So again, for these strangers, it felt kind of… that part felt good. “
To send a direct message on TikTok, both parties must follow each other. The person who posted the original video has since followed his TikTok account. Simon said, but he wasn’t interested in answering. “I would say exactly what I said in the video,” said the lady. Simon said they were related.