“I Had To Grieve My Old Appearance And What My Life Had Once Been”

When Nikki Lilly jumped on the 2016 TikTok trend, she expected the same nostalgic reactions everyone else was getting. Instead, she watched as strangers began using AI to “fix” her face: cropping one side, mirroring the other, and spewing back versions of her visage without her facial difference. Many called it a compliment. Some told her they had “fixed” her.

For Lilly, who has spent years rebuilding her confidence after developing a facial difference as a child, the experience was deeply violating. Here, she talks about identity, online cruelty, disability, and what it feels like to watch people use AI to erase parts of who you are.

What It Feels Like To Have Strangers Use AI To Manipulate Your Face

As told to Mischa Smith

I posted one of those trends where you share a photo of yourself when you were younger and then swipe to a photo of you now. It was completely harmless, everyone was doing it, and I remember the video starting to go quite viral very quickly. It was getting millions of views, and I went into the comments because I like seeing what people are saying and replying to people. And I was just completely bombarded.

I’ve been on social media for over a decade now, and hate is never something that’s OK or should be normalised, even though, unfortunately, it has become normalised online. But this felt different. It almost felt more passive-aggressive than direct hate because people genuinely seemed to think they were doing something positive.

They were saying things like, “You’re so beautiful,” but attaching it to AI-generated versions of me where my condition had been removed. It was like people had created this entirely different version of me and decided that was the version worthy of praise. It became a trend in itself. There were thousands and thousands of comments doing the exact same thing.

People had cropped my face to only show one side, or they were using AI to completely change my appearance by removing the side of my face affected by my condition and mirroring the other side instead. And people were commenting things like, “The potential,” or “Look, I fixed it.” I was honestly gobsmacked.

I remember sitting with it for over a week before I addressed it publicly because I didn’t want to give people the satisfaction of reacting immediately. A lot of the time, when people leave hateful comments online, that’s what they want. But at the same time, I also felt like I couldn’t not address it because it had become such an epidemic in itself.

As someone with a facial difference, appearance and identity are incredibly complicated things. I was born with both sides of my face looking the same, but when my condition became active at six years old, my appearance changed drastically. So all of my childhood photos before then look like a completely different person. When my face changed, I felt incredibly ostracised. I felt like I lost my sense of self and identity. My whole life became being stared at, being asked what had happened, feeling like a complete outsider, especially at such a young age; that’s incredibly difficult.

I had to grieve my old appearance and what my life had once been, and so much of my life since then has been about trying to believe that I’m good enough looking the way I do now — both to society and to myself.

For years, my appearance made me a recluse; I wouldn’t leave the house, I was too scared to speak to people at school, my face completely shaped how I moved through the world and how people treated me. So for people to then use AI to create this alternative version of my face — this version of me that they thought looked “better” — felt incredibly cruel.

It felt like people were shoving this alternate reality in my face. Like they were saying, my potential had been wasted because of something completely outside of my control. And the strangest part was that so many people genuinely believed they were helping me. They thought they were doing me a favour. They were saying, “Look, I fixed it.”

I just kept thinking: what planet are you living on where you think I’m going to be grateful for that? It was very dehumanising. It felt like someone was taking away my identity, my autonomy and my sense of self and basically saying it wasn’t good enough. It just erased half of what my identity is.

Social media has always been a very complicated thing for me because, in many ways, it was also my lifeline. When I was diagnosed at six years old, I was in and out of the hospital constantly and barely at school. I had to stop doing so many of the things I loved because I was too unwell, and I became scared of interacting with people because of my appearance and the comments or stares I would get in public.

Social media became my safe haven. It gave me a connection to the outside world when I felt completely isolated. It allowed me to escape into other people’s lives for 20 minutes and forget about being this very sick child. And when social media first started, it really did feel like a place where you could find community if you didn’t have it in real life. But now it’s easier than ever for people to anonymously comment abuse or harassment and face absolutely no consequences for it. People have become very brave online in ways they never would be in person.

I know for a fact that most of the people who comment these things online would never say them to my face in real life. What frightens me most is how quickly people stop seeing the human being behind the screen. When you use AI to alter somebody’s appearance, you are erasing part of their identity. Whether we like it or not, our appearance forms part of who we are, our story, our experiences. And when someone decides that your real face isn’t good enough and replaces it with something they deem more acceptable, that is incredibly damaging.

People don’t put themselves in other people’s shoes enough anymore. If thousands of people are all telling you in one singular moment that all the work you’ve done to accept yourself means nothing, that has an impact. It takes away from years of self-work and rebuilding confidence.

After it happened, I had to completely step away from social media for a while because I couldn’t even interact with the positive comments without seeing all the AI edits and abuse mixed in.

I’m lucky that I have a very strong support system around me. I’ve learned that it’s incredibly important to have a life and relationships outside of social media. If your whole world becomes online, then moments like that can completely consume you.

But I also think reclaiming your identity means refusing to let those people win. For me, that means continuing to speak about these issues publicly, whether that’s online, speaking at the United Nations, working with charities, or simply existing visibly as I am.

The best way you can revolt against people like that is by showing them that you’re still living your life to the fullest regardless. I’m not going to disappear because strangers on the internet decided my face wasn’t good enough for them.