NIKKI LILLY
- Andrew Rankin
- May 11
- 7 min read
Updated: May 22
Nikki Lilly is a British presenter, keynote speaker and advocate for embracing difference. Diagnosed with AVM, Nikki dedicates her life and career to raising awareness and offering support for those with similar facial disabilities. What began as makeup tutorials on YouTube for a small audience has grown into a platform of over half a million Instagram followers, where she shares her daily life and personal experiences. From speaking at the United Nations Committee on the Rights of Persons with Disabilities and serving as a Patron of Face Equality International to founding her own organisation, The Butterfly AVM Charity, Nikki’s unwavering commitment to diversity and inclusion is truly inspiring.
Words by Tatiana Summers.
Photographed by Betty Oxlade-Martin. Styled by Alexandria Field. Hair by Tarik Bennafla at Stella Creative Artists using Oribe. Make-up by Anna Inglis Hall at Stella Creative Artists using Charlotte Tilbury. Photographer assisted by Libby Chant. Stylist assisted by Stephanie Daley. Nikki Lilly appears courtesy of Public Eye Communications.
You’ve had such a fascinating journey so far, but it started at a really young age. What first made you want to start sharing your story with the world?
Initially, it was all very subconscious. When I started posting videos online it was completely unbeknownst to me that it would have this bigger meaning. As someone who grew up with a chronic illness, my desire has always been to share parts of my life that might not normally be seen by people without a chronic illness or facial disability – to educate and enlighten them about what it is like to have or live with this illness. So I think, initially, it all began from an advocacy and educational standpoint.
But secondly, I feel social media can sometimes appear like a highlights reel – and I never wanted what I talk about or posted to feel like this, because life is far more nuanced. Growing up, I never really had anyone that looked like me or that I could relate to, and I think a lot of the people that have resonated with me, or my story, are those that feel like an outsider in life or are having a tough time. They don’t want to come on social media and see a highlights reel of perfection! I wanted to be a means of escapism from this social media stereotype because visibility is everything. If you don’t see yourself represented in something – whether that be personality, interests, appearance, or background – it can be difficult to feel that you are a part of the world around you. However, by seeing people that you relate to or see yourself in, it can allow you to feel like your place in the world is valid and what you want to do is possible.
Left: Jacket and shirt by Tommy Hilfiger. Jewellery by Alexis Bittar. Right: Knit by Contemporary Wardrobe. Boxer by Fruity Booty. Jeans by Levis. Shoes by Gucci.
What has been the most meaningful or rewarding part of using your presence to make a difference? Is there a particular moment that stands out?
The most impactful thing about what I do is when I meet people in person, and they tell me their stories and about how I’ve helped them. It’s very surreal because younger Me, initially pressing record on my camera, really had no understanding of what it could do.
One moment that stands out is one I had very early on in my career. I received a comment from a woman who had been undergoing cancer treatment in the last couple years. Understandably so, she was very angry at life and had lost her self-confidence. She said that after watching some of my videos, she left the house for the first time in two years since being diagnosed. Anything like that – where I have been able to help give someone a little boost – is so touching. Receiving a comment like that was so special and spurred me on so much. It made me want to continue doing what I was doing.
In your view, what are some of the most pressing challenges that people with visible disabilities face today? And how can society be more meaningfully supportive?
There’s still a lot to contend with. 10% of people around the world have a facial difference and yet it’s still relatively unseen or unrepresented. Firstly, some of the challenges are as simple as having a livelihood and being treated equally to other people in terms of jobs and not being discriminated against in those areas.
There is also a huge amount of online hate and discrimination towards people with facial differences or other visible differences. At the United Nations a couple months ago, I spoke about how we fall through the cracks as a group of people as we don’t fall into the generic categories that social media think about for hate, so not much is always done to combat it. A big issue, is that a lot of social media companies don’t put enough onus on reprimanding people that spread and comment hate, allowing them to remain nameless and faceless and get away scot-free.
You’ll also find that in film and television many villains are still portrayed with facial ailments, which is incredibly damaging for children who are forming early dispositions. When they see a villain with facial differences and then encounter a real person with a similar appearance, they can then have a negative preconception of that individual. There’s therefore so much that schools and society more generally need to do to educate. It’s not just about educating about facial differences, but how difference should be normalised.
You’ve successfully established yourself in the fashion world and have made regular appearances at Fashion Week. What particularly draws you to fashion, and what does it symbolise for you on a deeper level?
Fashion is something that I’ve delved into since I was about 16 years old. Initially, makeup was that form of escapism and an outlet to express myself. As I have grown up, I’ve realised how beautiful fashion is as an art form. There’s something so beautiful about how clothes can be a means of an armour and how both fashion and makeup can be transformative to someone’s confidence. But what I love about the industry, is that there are no rights or wrongs. In life, we are constantly put into boxes so it’s amazing to delve into this world where there are none – it’s just about what makes you feel good.
But for me personally, since fashion hasn’t traditionally been the most inclusive space, simply being at the shows and working with beloved brands feels, in my own small way, like a form of advocacy.
Do you have a favourite brand that you’ve worked with so far?
I love Miu Miu! I’ve worked quite closely with them and have been to a few of their shows. For their last show I wore this neon two-piece and the time before I wore a bralette with a suede blazer which was all embellished. It’s been a great way for me to step out of my comfort zone.
Who inspires you the most — in fashion or beyond — and how have they influenced your outlook or personal style?
I draw a lot of inspiration from different areas, but I draw a lot of my inspiration comes from the 90s and, for day-to-day style, I love following people like Bella Hadid.
I’ve always been such a big fan of Vivienne Westwood and Alexander McQueen, designers that have always tried to challenge stereotypes, push the boat out and embrace difference. It’s those type of people in fashion – the ones that try challenge the norms and pave the way for the industry – that I have a particular affinity for. Similarly, I’ve also loved seeing the rise of Alex Consani and the amazing stuff she’s doing because, even though it shouldn’t be, it isn’t the norm! Having a transgender woman doing so well, and even winning Model of the Year, is truly inspiring.
Coat by Tommy Hilfiger SS25. Knit by Contemporary Wardrobe. Jeans by Levis. Shoes by Gucci.
What do you think are the key qualities or traits that contribute to achieving success, both personally and professionally?
Firstly, kindness. Life isn’t easy and everyone is just trying to live and do their best. It’s important to always try to lead with empathy and kindness – no one is better than anyone else.
Secondly, being a team player. We should be happy for other people’s success and want the best for them. Just because someone is doing well doesn’t mean you can’t too – there’s a place for everyone. Your route just might be different.
Thirdly, I think that being a good listener is such an important yet undervalued quality. This is a fast-paced world, so it’s important to take a moment to appreciate where you are and what you’ve done – to both listen to yourself or to others. Sometimes saying less is more powerful than saying more.
What would you like to achieve next in your career?
I really miss presenting and would love to be involved in more projects that have meaning, value, and impact. I’d particularly like to do more documentaries – educating people and raising awareness in diverse ways, as there’s such a wide range of topics to explore. Whatever I do, I want it to feel fulfilling and internally rewarding. My hope is to continue working on projects that raise awareness and shine a light on the things that truly matter.
International Face Equality Week is 12-19 May.
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