@lillysmallsz #stitch with @fuckinfrass i have taken screen shots of the comments will be posting them…everyywhereee. For those of you who were kind thank u. Youre fine. When someone does a background search/google search on yall… theyll see who you really are.do you talk to your colleagues like this? Your patrons?#nf1warrior💚💙 #nf1awareness #nf1fighter #bodyshaming #bodypositivity #streetharrassment
A 33-year-old Queens woman was forced to face her worst fears after TikTok bullies secretly posted a viral video showcasing her rare skin condition — because they thought she was spreading monkeypox to her fellow straphangers.
Lilly Simon said the online torment and misunderstanding drove her straight into the arms of the neurofibromatosis community she pretended she was never a member of.
“Being harassed can be especially isolating and frustrating when bullies focus their vitriol on a physical condition that’s outside of your control. It can be tempting to deal with the hatred alone, or simply brush it off and move on to avoid showing weakness,” Simon wrote in a column for USA Today last month.
“But admitting you need support can actually give you strength.”
Simon became the subject of the viral TikTok after a stranger filmed her without her consent during her subway commute on a hot summer day last year.
The video — which garnered hundreds of views — zoomed in on numerous bumps that cover her body and questioned whether the shorts and T-shirt-clad Simon was exposing the rest of the train car to monkeypox.
At the time, the infectious disease characterized by skin lesions was sweeping the globe and causing panic that another pandemic could be forthcoming.
Though some commenters offered support, most condemned Simon for jeopardizing other commuters’ health and some even outright 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’s 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 she considered ignoring the online hate, Simon decided to fire back against the assuming conspiracists.
In her own video — which has since gained more than 1.5 million views — she peacefully educated her followers on what NF1 entails before letting her haters know she’s screenshotted all their nasty comments and posted them online so that they’d show up in background checks.
“I will not let any y’all reverse years of therapy and healing that I had to endure to deal with the condition, and of course, to exist around people like you. I’ve come a long way and I like me,” Simon said.
“But, you know, I’m not that healed and I’m not above being vengeful,” she added while throwing up her middle finger.
The original video bullying Simon has since been deleted.
Simon said that “from her nightmare came healing” after she turned to the NF community for support.
In the following months, she’s connected with fellow NF sufferers as well as organizations like the Children’s Tumor Foundation, which raises awareness about NF and supports research into cures.
Simon has also become a social media advocate for the disorder and chronicles her journey for her followers.
“That’s something I’ve learned since my unwanted moment of TikTok fame. When I embraced the NF community, I embraced more of myself. Even though there’s so much more to me than my disease, 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.”
