“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.