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Nikki Lilly: “Makeup and Social Media Were My Escape From Being a Sick Kid”

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Nikki Lilly: "Makeup and Social Media Were My Escape From Being a Sick Kid"

Nikki Lilly is a force to be reckoned with. At just 19 years old, the YouTuber and campaigner already has a plethora of achievements to her name, from being awarded the International Emmy Kids Award in 2019 for her episode of the CBBC series My Life, to being the youngest ever recipient of the BAFTA Special Award.

While this is already an incredible feat for someone so young, it comes after Nikki describes her world as being “flipped upside down” at the age of six, when she was diagnosed with arteriovenous malformation (AVM), a rare medical condition which caused her facial appearance to change. Lilly has taken her visible difference and social media fame (that’s 492k followers on Instagram by the way) in her stride, with resilience, a natural flair — the reason her TikToks have over 68 million views — and a headstrong determination to strive for social change.

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As we celebrate International Face Equality Week, she’s partnered with social justice charity, Face Equality International, in their “My Face is a Masterpiece” campaign. Sponsored by beauty giant Sephora, it aims to spotlight real people with diverse facial appearances who are breaking down barriers in the beauty industry for a community that has historically felt excluded. And for Lilly, the campaign has been equally groundbreaking and emotional. I joined her backstage at the campaign shoot, where we spoke about raising awareness for visible difference and her obsession with beauty.

Nikki Lilly: "Makeup and Social Media Were My Escape From Being a Sick Kid"

“It is so incredibly important for me to be a part of this and for this campaign and shoot to be happening,” she told PS UK. “It’s surprisingly rare to have every single person on set be someone with a visible difference. It marks a day in history, honestly, and it’s been really emotional for me. I grew up never seeing someone that looked like me that I could identify with. It’s so important to see yourself in society, to then feel like you can thrive and get the opportunities you deserve and believe that what you want to do is possible. So being a part of this is part of changing the narrative. It’s part of what’s next to come.”

“We want to change narratives and actually change laws too, things that are finite. There’s been a lot of talk and now we’re ready for the action part.”

What’s next is what’s important, especially for Lilly. It means less talk and “more action” in changing narratives and laws. According to Face Equality International, the legal recognition of visible differences are limited to disability laws, but “the barriers experienced by someone with a facial difference are often attitudinal rather than physical” making the current law difficult to translate. So, independent recognition and protections for those with facial differences are crucial.

In her field of work, Lilly wants to see changes too. She said: “We should be treated and given exactly the same opportunities as someone who doesn’t have physical differences. We shouldn’t be ostracised in society or in the industry. We shouldn’t feel like a black sheep or a tick box, the ‘Oh, the one person with a visible difference or disability’. I’m striving to see more people with visible differences in mainstream media, in acting roles, and not as villains, which are often portrayed with scars or burns or things like that. We want to change narratives and actually change laws too, things that are finite. There’s been a lot of talk and now we’re ready for the action part.”

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A post shared by Nikki Lilly (@nikkililly_)

This year’s Face Equality Week is all about using art as a tool for social good, and despite being a fast-rising icon in the beauty industry, Lilly’s humble beginnings with makeup are what spurred her to be the creative star she is today. Before her many accomplishments and social movements, Lilly was catapulted to success through her YouTube presence, on an account which she started aged eight, where she shared her experience of living with a visible difference. As a teen star, she also founded The Butterfly AVM Charity, the first specific AVM charity to raise awareness and funds for research into the condition and for wider support for those with the condition.

For Lilly, YouTube wasn’t some marketing ploy or a fast-track to stardom. Uploading videos about beauty, baking, mental health and being a kid with a chronic illness was simply an escape. “When I first started doing what I do I genuinely didn’t even think I’d have any impact. I started social media as an outlet for myself, a safe haven to find and accept myself again and to escape from being a sick kid, what with my appearance drastically changing and my life all of a sudden being flipped upside down,” she revealed. “Looking back at my younger self starting social media I had no idea what was to come. Fast forward to today, I would really struggle in this job if I didn’t feel like what I was doing had meaning and had impact. Making change and making a difference is what fulfils me, even if that’s just one person who feels more confident in themselves after watching my videos or me talking about having a visible difference.”

“Falling in love with makeup was a way for me to accept my new appearance and look in the mirror at my face when it was constantly changing. It was a way for me to escape.”

“When I was growing up, I literally didn’t have any makeup of my own, so I used to steal my sister’s and mum’s makeup. I remember Lancome Juicy Tubes and a purple coloured Bobby Brown eyeshadow,” she recalled. “Watching my mum and my sister do their makeup and just being mesmerised by how transformative it was, not in appearance, but in confidence. It could completely change a person and how they feel. It was genuinely like magic. And so when I used those products, though they didn’t suit me and I didn’t really know how to use them, it was just the experience of using them and the excitement it made me feel.”

“Falling in love with makeup was a way for me to accept my new appearance and look in the mirror at my face when it was constantly changing. It was a way for me to escape. I’d have swatches all over my arms, but I remember how hopeful I felt, for the first time in a long time,” Lilly explained.

https://www.tiktok.com/@nikkililly/video/7355941531271875872

But the “My Face is a Masterpiece” campaign goes beyond beauty and acts as a step in the right direction for equal opportunities for those with visible differences. “It’s about social justice, it’s about social change and advocacy. It’s about getting our voices heard, getting our faces seen and then having more opportunities,” Lilly said.

“Being able to be a voice for people that have visible differences has been such a special thing. And I don’t take that lightly, especially as someone with a visible difference. It’s very emotional. I spent my whole childhood constantly never feeling like enough, always feeling like the odd one out, always feeling on the outside looking in. So redefining that uniqueness is a beautiful thing.”

Nikki Lilly’s Three Beauty Must-Haves

Moisturiser

“My skincare must-have is moisturiser. I need moisturiser because I wake up with my face feeling cracked and dry. So if I don’t have moisturiser, it would be a real struggle. I also love a multipurpose product, so the Kosas BB Burst Tinted Gel Cream (£34) is a favourite of mine at the moment.

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Mascara

“I feel like mascara makes you look more awake. I love the Maybelline Sky High Mascara (£13), such a good one. I have to use waterproof mascara because any other mascara smudges under my eyes and gives me those panda eyes.”

Lip Balm or Lip Stain

“My lips get so dry, so I love a lip balm that’s got a colour in it. Ole Henriksen’s Pout Preserve Peptide Lip Treatment (£17) is a bit like the Rhode Peptide Lip Treatment but I find them more moisturising. I have the brown one at the moment. Also, a lip stain, like Benetint Rose Tinted Lip and Cheek Stain (£22), on my lips and cheeks, is another good one.”

Lauren Gordon is the editorial coordinator at PS UK, where she creates lifestyle and identity content. Lauren has a degree in journalism from University of the Arts London and previously worked as a showbiz and TV reporter at The Mirror US. Lauren specialises in pop culture, hair and beauty, focusing on trends, sharing in-depth tutorials, and highlighting hidden gems in the beauty industry.

Nikki Lilly: "Makeup and Social Media Were My Escape From Being a Sick Kid"

Kosas BB Burst Tinted Gel Cream £34 from sephora.co.uk Buy Now

Nikki Lilly: "Makeup and Social Media Were My Escape From Being a Sick Kid"

Maybelline Sky High Mascara £13 from boots.com Buy Now

Nikki Lilly: "Makeup and Social Media Were My Escape From Being a Sick Kid"

Ole Henriksen’s Pout Preserve Peptide Lip Treatment £17 from lookfantastic.com Buy Now

Nikki Lilly: "Makeup and Social Media Were My Escape From Being a Sick Kid"

Benetint Rose Tinted Lip and Cheek Stain £22 from lookfantastic.com Buy Now