A stranger filmed him on the train. TikTok users have decided that he has monkeypox

Lilly Simon, 33, of Brooklyn, did not have monkeypox. He has neurofibromatosis type 1, a genetic disorder that causes tumors in his nerve endings. The videos were secretly captured by TikTok user Simon while he was riding the subway on a Thursday in late July.

In the video, Simon is wearing shorts, a t-shirt and a leaf-patterned mask on a train. 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 over it, suggesting Simon may be riding the subway with an active case of monkeypox, a virus recently declared a global health emergency by the World Health Organization and a public health emergency by the United States. health emergency.

A few days after that subway ride, Simon’s sister called him. He watched the video.

“Some of his friends reached out to him,” Simon said. According to him, this news hit him “like a pile of bricks”.

“I’m not new to people hating this situation,” said Simon, who is a project manager and works at The New York Times School of Education, 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” given the recent increase 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 the pustules are localized in a person’s genitals.

As the person recorded in the TikTok video, Simon’s arms, legs and feet grew, his tiny tumors appearing as bulging bumps on his skin. As a child, Simon was called “the leper” and his primary school classmates joked that he had smallpox.

He first weighed whether or not to answer.

“I was heartbroken and suddenly had to make a decision,” Simon said. “Do I fight it? There’s no hiding that it’s me. Or how should I answer it?”

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 Simon appears on the screen and tells the whole story.)

“I’m not going to let that happen,” Simon said of his choice. “I don’t look like a coward and I’d rather stand up for myself than just let it go.”

“The bumps aren’t good, but they’re still on my skin and causing a lot of health challenges, both physical and mental,” Simon says in his video. In an interview with The New York Times, Simon added to the age of multiple surgeries, he had tumors growing in his brain and eyes. There is currently no cure for neurofibromatosis type 1. It is not contagious.

According to Simon, these challenges include scoliosis – which he has “controlled” through activities such as yoga, sports and stretching – and multiple tumors growing inside his ear that affect his hearing.

The tumors are itchy and painful, and she needs regular visits to doctors.

“Dealing with the general public caused some anxiety, depression and a little bit of PTSD, and that situation definitely didn’t help,” Simon said, noting that he “has a milder version.” ” and “in the early stages” of the condition.

“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. 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 1 million times on TikTok. The original TikTok video has since been deleted, 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 the Hydra: cut off one head and two more will grow. 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. According to Simon, the comments ranged from genuine concern to threats of physical violence against her.

TikTok did not respond to a request for comment for this article.

Recording videos like Simon’s is legal, 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.”

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 do something that defames someone or defames someone, it’s a whole different set of rights,” Osterreicher said.

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 candidate in sociomedical sciences at Columbia University and a researcher at the Harvard GenderSci Lab. Borsa was also a member of the New York City Department of Health and Mental Hygiene’s monkeypox task force.

Borsa highlighted how some TikTok videos, such as those in which people talk in detail about the details of monkey disease, can use the app in a positive way. 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, Simon’s response video is one that calls 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. Simon spoke about his condition.

“I don’t even talk about it with my friends. So again, for these strangers, it kind of felt … 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 been following her TikTok account, Simon says, but she’s not interested in responding.

“I would say exactly what I said in the video,” Simon said of their bond.

Leave a Comment

Your email address will not be published.