A stranger filmed her on the train. TikTok users decided she had monkeypox.

Lilly Simon, 33 in Brooklyn, does not have monkeypox. She suffers from neurofibromatosis type 1, a genetic condition that causes tumors to grow in her nerve endings. These tumors were surreptitiously filmed by a TikTok user as Ms Simon took the metro on a Thursday in late July during her commute.

In the video, Ms Simon sits on the train wearing shorts, a t-shirt and a leaf-patterned face mask. She looks 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 posed on top, appearing to indicate Ms Simon could be taking the subway with an active case of monkeypox, the virus recently 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 contacted her,” Ms Simon said. She said the news hit her “like a pile of bricks”.

“I’m not new to people who are mean to the condition,” said Ms. Simon, who is a project manager and worked for The New York Times School, an educational program that’s part of The New York Times. Company. “I’ve had it since I was a kid.” She said with the recent spike in monkeypox cases, she 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 contract the virus will develop pustules, experts say there may be only one lesion or the pustules will be localized to a person’s genitals.

In the TikTok video, the person recording zooms in on Ms Simon’s arms, legs and ankles, where her small tumors appear as raised bumps on her skin. As a child, Ms Simon said she was called a “leprosy” and her primary school classmates joked that she had smallpox.

She first weighed whether to respond or not. “My heart sank and all of a sudden I had to decide,” Ms Simon said. “Am I fighting it? There’s no hiding that it’s me. Or do I, how do I answer it? »

In the end, she decided to sew her response to the original video. (On TikTok, stitching together a video means adding your new video to an existing clip on the app. In this case, viewers can see a few seconds of the original subway video before Ms. tell the whole story.)

“I wouldn’t pass up something like that,” Ms Simon said of her choice. “I can’t look like a coward, and I’d rather defend myself than let this pass.”

“The tumors are benign, but they’re still all over my skin and causing me a lot of health complications, both physical and mental,” Ms Simon explains in her video. Speaking to The New York Times, Ms Simon added that she was diagnosed when she was 8, had undergone multiple surgeries and had tumors growing in her brain and eyes. There is currently no cure for neurofibromatosis type 1. It is not contagious.

Ms Simon said those complications also include scoliosis, which she has been able to control through activities like yoga, sports and stretching, and several tumors growing inside her ears, which are affecting her hearing.

The tumors can be itchy and painful, and she often needs regular visits to her doctor. “Dealing with the general public with this caused, like, kind of anxiety and depression and a bit of PTSD, and that situation certainly didn’t help,” Ms Simon said, noting that she had “a lot a mild version” and is in the “early stages” of the disease.

“I won’t let any of you undo the years of therapy and healing I’ve had to endure to cope with illness and of course to exist around people like you,” she says in her TikTok. Ms Simon said she chose to use ‘buzzwords’ to make her plight relatable. “I knew people would resonate with that no matter what they were going through.“, she says.

His response video has been viewed over a million times on TikTok. The original TikTok video has since been deleted, but not before racking up a significant number of views. (It’s unclear if the original video was deleted by TikTok or by the original poster.)

Social media platforms like TikTok are something of a hydra. Cut off one head and three more regrow. Or, in this case, delete a video and multiple reposted versions will appear in its place.

Prior to its removal, the original video initially had comments enabled, meaning anyone with a TikTok account could comment on the video. The comments, Ms 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 is legal to record videos like Ms. Simon’s, said Mickey Osterreicher, the general counsel for the National Press Photographers Association. “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 and pointed out that New York “probably has less privacy than other states depending on what you’re filming for.”

However, what a person does with a recording after taking it can change the situation. “The thing I tell people all the time is that it’s a whole different set of rights when you’re using an image and doing something that might be defamatory or misrepresent someone.” , said Mr. Osterreicher.

“I think, you know, having that person record it, that was good,” he said. “But what they did with it afterwards, she might have a very good cause of action against that person for doing what they did.”

Having monkeypox, or even being suspected of having monkeypox, can have an emotional cost. “People are afraid of having it associated with them because of social stigma, ostracism and assumptions made about their sexual or intimate lives,” said Alexander Borsa, doctoral student in sociomedical sciences at Columbia University. and researcher at the Harvard GenderSci Lab. Mr. Borsa also served on a New York City Department of Health and Mental Hygiene task force dealing with monkeypox.

Mr Borsa pointed out how certain 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’s no surprise to see the platform being weaponized in this way, as many LGBTQ people seek treatment advice and information online.

For now, at least, Ms. Simon’s response video is the one demanding the attention of TikTok’s wayward algorithm, and she’s since heard from a number of strangers whose lives have also been impacted by the neurofibromatosis type 1.

“I don’t think I would ever honestly put myself out there like that to find these 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 Ms. Simon spoke of her condition. “I don’t even really tell my friends about it. So again, for these strangers out of nowhere, it was kind of, it 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 followed her TikTok account, Ms Simon said, but is not interested in returning the favor. “I would have said exactly what I said in the video,” Ms Simon said of the two potentially related.

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