A 33-year-old Queens woman was forced to face her worst fears after TikTok bullies secretly posted a viral video showing her rare skin condition, because they thought she was spreading monkeypox to her peers.
Lilly Simon said the online torment and misunderstanding landed her right into the arms of the neurofibromatosis community of which she pretended not to have been a member.
“Being bullied can be especially isolating and frustrating when bullies focus their virulence on a physical condition that is out of your control. It can be tempting to deal with the hate alone, or just ignore it and move on to avoid showing weakness,” Simon wrote in a column for USA Today last month.
“But admitting that you need support can actually give you strength.”
Simon became the subject of viral TikTok after a stranger filmed her without her consent during her subway ride on a hot summer day last year.
The video, which garnered hundreds of views, zoomed in on numerous lumps covering his body and questioned whether Simon’s shorts and T-shirt were exposing the rest of the train car to monkeypox.
At that time, the infectious disease characterized by skin lesions was spreading throughout the world, causing panic at the possibility of another pandemic looming.
Although some commenters offered support, most condemned Simon for endangering the health of other travelers, and some even openly threatened physical violence against her.
“I don’t have monkeypox. I have neurofibromatosis type 1, or NF1, a condition that causes tumors to grow on my nerve endings. It is not contagious. But it has caused me years of mental and physical pain. And I’ve been trying to hide it since I was diagnosed at age 8,” Simon wrote.
Though he considered ignoring the hate online, Simon decided to hit back at the alleged conspirators.
In his own video, which has since garnered more than 1.5 million views, he peacefully educated his followers on what NF1 entails before letting his haters know that he captured all their nasty comments and posted them online for them to see. show up on background checks.
“I will not let any of you reverse years of therapy and healing that I had to endure to deal with the condition and of course to exist with people like you. I’ve come a long way and I like it,” Simon said.
“But, you know, I’m not that healed and I’m not above being vengeful,” she added while raising her middle finger.
The original video bullying Simon has since been removed.
Simon said “out of his nightmare came healing” after he turned to the NF community for support.
In the months that follow, she connects with other people living with NF, as well as organizations like the Children’s Tumor Foundation, which raises awareness about NF and supports research for cures.
Simon has also become an advocate for the disorder on social media, chronicling her journey for her followers.
“That’s something I’ve learned since my unwanted moment of fame on TikTok. When I accepted the NF community, I became more accepting of myself. Although there is much more to me than my illness, fully accepting it as part of who I am has made me feel more whole,” Simon wrote.
“I never expected to be an advocate for people with NF, but now I have ambitions in this role. I want to help others feel the self-acceptance and strength that everyone deserves to know.”
