Nikki Lilly On Embracing The Beauty Of Being Different
After years spent championing visibility for people with facial differences, British broadcaster and advocate NIKKI LILLY is using fashion, makeup and unbridled joy to challenge a culture that still mistakes uniformity for beauty. By NATASHA BIRD
Nikki Lilly has an incredibly loyal fan base. As she should, considering she’s been cultivating it since she was eight years old – just two years after she was diagnosed with a rare medical condition called arteriovenous malformation (AVM), which affects the blood vessels in her face. These days, Lilly leads a life of advocacy, television interviews, global fashion events and front-row invitations, while her online videos have charted her remarkable journey with profound honesty and vulnerability.
So when Lilly opened the comments on one of her TikToks last year, she expected the usual churn of support and curiosity. She had just posted an ordinary video showing a picture of herself as a child, followed by another in the present. As it began to pick up traction, something strange started happening in the post’s engagement.
People had taken her image and fed it through AI tools to ‘correct’ her face. Some had asked the retouching tool to mirror one side, expunging the effects of the craniofacial malformation that has become such a huge part of her identity. Others had simply cropped a screen capture of the image to keep Lilly’s AVM out of frame. Then they posted the images back beneath her own video, with captions such as “wasted potential”, “what could have been” and, most painfully, “Nikki, I’ve fixed it.”
“I was taken aback,” Lilly says now. “I had that instant sinking feeling in my chest and stomach thinking, How has this become a thing?” Within hours, the online responses had picked up speed, with more people reacting in the same incomprehensible way to Lilly’s other videos. “It was almost worse than actual hate online,” Lilly continues, “because it was people thinking they were doing me a service.”
“[Social media] was a real means of connection when I didn’t have connection to anything else”
Such is the strange cruelty of much of modern beauty culture: it is often regimentation disguised as help. But, for Lilly, whose public life is predicated on the radical refusal to disappear, this felt like enforced erasure. “My whole life journey has been about trying to accept who I am and the way I look,” she says. “So it was basically undoing all of the self-work and the love that I have for myself in an instant.”
Lilly, now 21, initially turned to social media in the wake of her diagnosis as it felt like a sanctuary. “Especially as a younger girl, it was a massive lifeline,” she says. “It was a real means of connection when I didn’t have connection to anything else.” Through it, she found people with facial differences in India, people with her condition in Italy, and a community of followers who understood what it meant to feel like an outsider.
“Fashion, for me, is a massive extension of reclaiming control… It’s like armor”
“There are some days where I’m so glad to have this community online backing me,” she says. “And then there are other days where I completely question the job.” The key, she has learned, is to carefully protect the life that exists beyond the internet, too. “I have to prioritize my actual life in person,” she says, “to feel like a whole human outside of social media.”
If Lilly’s story is about anything, it is about endeavoring to live a very full life, regardless of her health. Her mother, who gave up her job to become her carer during treatment, was the first woman to teach her that difference needn’t stop her from doing anything. “She always instilled in me that I was enough as I was,” Lilly says. “She taught me that putting yourself in a box is what society wants in order to feel comfortable.”
Lilly also credits British TV presenter Katie Piper for being a significant source of self-confidence. The latter sustained severe facial burns and blindness in one eye after an acid attack orchestrated by her ex-boyfriend in 2008 – and Lilly first interviewed her when she was just 12 years old. “At that point I was still really struggling to like myself and be kind to myself,” she says. “Katie showed me that you can have such a full life in spite of everything you go through,” Lilly says. “She always said to me: the more you see difference, the more normal it becomes.”
That idea sits at the center of Lilly’s advocacy. The more narrowly we define beauty, the more violently we police it. “All society is doing is telling you the things that are wrong with yourself,” she says. “Whether it’s cosmetic companies, tech, whatever it may be, they are preying on insecurities because that is what makes money.”
Fashion, then, might seem like an unlikely refuge. And Lilly knows its contradictions. She is acutely aware of being one of the few people with a visible difference at many of its dinners, shows and front rows. But fashion has also given her something precious: the chance to play. “When my appearance started changing, I lost all sense of autonomy and authority over my life,” she says. “My value basically came from being a body on the table to be operated on.”
“Fashion, for me, is a massive extension of reclaiming control,” she says. “It’s like armor.” She doesn’t ever pick clothes for concealment, aiming always for expression and creativity. Fashion helps her to love being seen. “It’s about experimentation,” she says. “It reconnects me with the part of myself that loved dressing up and putting on shows.”
Last year, Lilly walked her first fashion show, closing for cult label Matières Fécales at Paris Fashion Week. “I was so like a fish out of water,” she says. “The closer it got, I was thinking, why have I agreed to this?” But the designers told her they had chosen her precisely because she was not a conventional model. “That was probably the first time I felt fashion had fully embraced me back, wholly as who I am.”
She is heartened by progress where she sees it – more diversity at fashion’s biggest cultural moments, more designers spotlighting difference as something to celebrate. “It shouldn’t have taken this long,” she says. “But you also have to recognize those things.”
Lilly hopes the future is one in which faces are not ‘corrected’ into homogeneity and beauty is not a narrowing corridor. “The more you see difference,” she says, repeating the mantra that Piper gave her, “the more normal it becomes.”