Lilly Simon, a 33-year-old woman who lives in Brooklyn, New York, does not have monkeypox. What he does suffer from is neurofibromatosis type 1, an inherited disorder that causes tumor growth in nerve endings. These tumors were secretly recorded by a tiktoker while Simon was commuting to work on the subway on a Thursday in late July.
In the video, Simon is sitting on the train wearing shorts, a t-shirt and a mask with a leaf design. She sees her cell phone without knowing that they are recording it.
The video was later posted on TikTok with a monkey emoji and a question mark placed on top of it.apparently to indicate that Simon might be on board the subway with an active case of monkeypox, the virus that the World Health Organization recently declared an international health emergency.
A few days later, Simon’s sister called her. She had seen the video.
Simon noted: “Some of her friends contacted her.” He recounted that the news of her hit her “with a bombshell”.
Simon, who is a project manager and used to work for The New York Times School, an educational program that is part of The New York Times Co., mentioned: “I’m used to people being rude because of the disease. I have had her since she was a child.” She added that, 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 pustules that eventually crust over and slough off as the virus progresses. Although most people who contract the virus will develop pustules, experts say there could be a single lesion, or the pustules could be located on the individual’s genitalia.
In the tiktok, the person recording zooms in on Simon’s arms, legs and ankles, where his small tumors appear as pustular eruptions on the skin. Simon says that when she was a child, she was called a “leper” and her classmates in elementary school made fun of her. saying he had smallpox.
At first, he considered whether or not he should answer.
Simon said: “I felt very sad and suddenly had to decide. Should I… um… fight it? I can’t hide that it’s about me. Or… how should I answer?”
In the end, he decided to paste his response to the initial video. (In TikTok, pasting a video means adding a new video to an existing clip in the app. In this case, viewers can watch a few seconds of the original video on the subway before Simon comes on screen and tells the full story.) .
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Simon noted of his decision: “I wouldn’t ignore something like that. I can’t look like a coward and I’d rather defend myself than just let it go.”
The young woman also indicated in her video: “The tumors are benign, but even so they are all over my skin and they cause me many health problems, both physical and mental.” Speaking to The New York Times, Simon added that she was diagnosed at age 8, she has undergone multiple surgeries and has tumors growing in her brain and eyes. Currently, there is no cure for neurofibromatosis type 1. It is not contagious.
Simon says that among the health problems they cause him are scoliosis, which he was able to get “under control” through activities such as yoga, sports and stretching, and various tumors that grow inside his ears, which affects your hearing.
The tumors can be itchy and painful; you should visit your doctors often.
Simon assured: “Dealing with it in front of the general public has caused, like, some kind of anxiety and depression. and a little PTSD [PTSD, por su sigla en inglés] and this situation definitely did not help.” He stressed that he has “a very mild version” and is in the “initial stages” of the condition.
On his tiktok, he noted: “I will not allow any of you to set me back years of therapy and healing that I had to endure to deal with the disease. and, of course, to live with people like you”. Simon shared that he decided to use “trend words” to make them relatable to his situation. He stated, “I knew people would resonate with her no matter what they were going through.”.
His video response has been viewed over a million times on TikTok. The original tiktok has been removed, but not before it amassed a significant number of views. (It is unclear if the original video was removed by TikTok or by the author.)
Social media platforms like TikTok are like a hydra: you cut off one head and it grows three more. Or, in this case, you delete a video and multiple republished versions will appear in its place.
Before its removal, the original video had comments turned on at the start, meaning anyone with a TikTok account could comment on the video. Simon said the comments ranged from genuine concern to threats of physical violence against her. TikTok did not respond to a request to comment for this article.
Having monkeypox or just being thought to have it can take an emotional toll.
Alexander Borsa, a doctoral student in Sociomedical Sciences at Columbia University and a researcher at the GenderSci Laboratory at Harvard University, opined: “People fear being associated with them because of social stigma, ostracism, and what people assume about their sexual or intimate lives.”. Borsa has also been part of a New York City Department of Health and Mental Hygiene task force dealing with monkeypox.
Borsa highlighted how some tiktoks, particularly those from people who talk in detail about what it’s like to have monkeypox, could be a positive use of the app. However, he also noted that it was not surprising to see the platform being used as a weapon in this way, as many people LGBTQ they look online for advice and information about treatments.
At least for now, Simon’s response video is the one that draws the attention of TikTok’s fickle algorithm, and since then she has been contacted by a host of strangers whose lives have also been affected by neurofibromatosis type 1.
Simon spoke about his illness: “To be honest, I think I would never have opened myself up to find those people in that way. It isolates you and there aren’t a lot of people to talk to about it, especially, you know, in front of me, or at least in my community and in the places, the spaces that I occupy. Actually, I don’t even talk to my friends about it. So again, about these strangers that came out of nowhere, it’s like, it felt […] that part felt good.”
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