A British TikTok creator living with AVM has spoken out against a toxic social media trend which sees users cruelly editing her features to erase her facial difference
A British influencer living with a facial deformity has spoken out after receiving hundreds edited pictures of herself mocking her “wasted potential”.
Nikki Lilly, a 21-year-old who has amassed millions of followers across YouTube, TikTok and Instagram, has a rare condition which has caused deformation on one half of her face. On her TikTok channel, she posts beauty and lifestyle content, while advocating for awareness around her condition and those living with facial differences. She has previously won EMMY and BAFTA, and has recently walked the Cannes Film Festival red carpet.
However, in a recent TikTok shared with her nine million followers, Nikki spoke out against a disturbing new trend, which she claims has “gotten out of hand and is not okay.”
She revealed that after one of her videos went viral, her comments became flooded with people cutting off the right side of face, which is where her deformity presents itself, and instead only showing the left side.
She shared screenshots of comments, which featured pictures of the left side of her. Captions included: “Face card so lethal it had to be nerfed” and “wasted potential”.
She also said that people have been editing her face so that her right side mirrors her left side, completely reimagining what her face looks like.
“Basically people think they’re doing me a favour by commenting things like that and saying, ‘Oh, I fixed it,’” she said. “All you’ve done is reinstated every single thing that has ever been difficult for me, which is accepting my appearance, feeling rejected by society, not feeling good enough. What have you helped?”
She said that felt an onus to speak up for the facial difference community, stating: “This is so wrong and I don’t want to have you as a follower if what you’re gonna do is cut off half of my face… When you are cutting off and erasing me and saying that you don’t accept me.”
She added: “My ‘potential’ has nothing to do with your limited ideas of pretty.”
The comments were widely supportive, with many agreeing that these edited photos were “dehumanising” and examples of “disgusting ableism”. Others pointed out the obsession the app had with “policing women’s appearances”.
What is Nikki Lilly’s condition?
Nikki has a high-flow craniofacial arteriovenous malformation (AVM), which is a tangle of abnormal blood vessels that can cause severe health complications. The condition is rare and occurs in about 18 out of 100,000 people. Out of these, only two will show any symptoms.
For more stories like this subscribe to our weekly newsletter, The Weekly Gulp, for a curated roundup of trending stories, poignant interviews, and viral lifestyle picks from The Mirror’s Audience U35 team delivered straight to your inbox.
What is the cause of AVM?
An AVM occurs when a tangle of blood vessels creates irregular connections between arteries and veins, which disrupts blood flow and prevents tissues from receiving oxygen. However, the cause of AVMs is not clear. In rare cases, they are passed down in families.
It comes after ‘TikTok’s perfect face trend is a fast track to making people feel like they’re not good enough’.
Help us improve our content by completing the survey below. We’d love to hear from you!