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

“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.

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