“I think, you know, the fact that this person recorded it, that was fine,” he said. “But what they did with it afterwards, she might have a very sound cause of action against that person for doing what they did.”
Having monkeypox, or even being believed to have monkeypox, can come at an emotional cost. “People are afraid to have it associated with them because of social stigma, ostracization and assumptions made about their sexual or intimate lives,” said Alexander Borsa, a doctoral student in sociomedical sciences at Columbia University and a researcher with the Harvard GenderSci Lab. Mr. Borsa has also been part of a New York City Department of Health and Mental Hygiene working group dealing with monkeypox.
Mr. Borsa highlighted how some TikTok videos, such as those from people speaking in detail about what it is like to have monkeypox, could be a positive use of the app. But he also noted it was not surprising to see the platform being weaponized in this way, as many L.G.B.T.Q. people seek guidance 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 has since heard from a number of strangers whose lives have also been affected by neurofibromatosis type 1.
“I don’t think I would have ever honestly put myself out there like that to find those people otherwise. It is 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 said of her condition. “I don’t really even talk to my friends about it. So again, for these strangers out of nowhere, it kind of, it did feel … that part felt OK.”
In order 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 she is uninterested in reciprocating. “I would have said exactly what I said in the video,” Ms. Simon said of the two potentially connecting.