Top and skirt Critter / Shoes Realm Shoes

Some of her most noteworthy accolades include writing a bestselling book, Come To Life: Highs, Lows and How to Live Your Best Teen Life, where she offers her advice on how to navigate the bumpy ride of being a teenager. She has also worked with various high-profile brands and organizations to promote diversity and representation, particularly for those with visible differences or disabilities. Receiving her bouquet of flowers, her activism has been rewarded with a number of trophies for her mantlepiece. At the Pride of Britain Awards, she received the Child of Courage award while her programme, My Life: Born to Vlog, which documented living with her rare condition, won an International Emmy Kids Award. Not to mention, Nikki remains the youngest recipient of the BAFTA Special Award.

As a new year approaches, Nikki is ready to continue to kick ass and spread more light. Following an exclusive photoshoot with Principle, the 20-year-old tells us about her favourite fashion brands, what changes need to be made within the industry, why YouTube has taken a back seat, and the future. 

Top and skirt Syra J

How was the British Fashion Awards?

It was so good. I love the British Fashion Awards because I feel like there’s not much in the UK that we do to celebrate fashion. It’s not as crazy or not as your big deal, but it’s like our UK version of the Met Gala in a way. Obviously, there’s no theme. Fashion has been a big part of my life, especially in the last few years, in self-expression, confidence, and empowerment. It’s a night where you have an excuse to dress up and put on some fun clothes. I mean, I wish it wasn’t in December because I’m always freezing. It’s so cold before you get in. But it was so good. This year, A$AP Rocky won an award, and so did JW Anderson. I was wearing LOEWE this year. I’ve been the past three years now, and each time it’s always nice. Comparing it to the last, I think this is one of my favourite years.

What’s it been like being embraced in the fashion world?

It’s been really special, especially working with brands that I love. And you know, I am someone with a visible difference and it’s not really been an industry where difference has been embraced. If anything, it’s quite the opposite. I think you can kind of see fashion in a very surface-level way. But for me, I think it’s been trying to see fashion for the good of it and the more depth than putting on clothes. You know, I work a lot with brands like Miu Miu and it’s been really special to be embraced by the people that work for these brands as well and for them to really see my vision and support me. I think that’s really special when people just resonate with your story because of course there are A-listers and there are people that are more of note that they could dress and still will, but they see my story and they see the depth and they see that I’m trying to do something different and spread awareness and advocate. I think even being able to go to fashion shows and sit at shows where they notoriously weren’t for people like me in my industry, people with disabilities or physical differences, I think it’s quite special to be there. That’s kind of half the battle. So it’s been amazing. I’ve done and attended Fashion Week the last few years now and it’s always chaotic, but you kind of embrace that and it’s always special. Fashion for me now is kind of like what makeup for me felt like when I first found it and got diagnosed with my condition in the sense that it’s a bit of armour. I love being able to wear other brands’ clothes and go to their shows and support them because they’re brands I love. It’s definitely been a special thing and I try and just take it all in my stride.

Dress Hisu Park / Shoes Realm Shoes

What are some of your favourite brands then?

Oh, that’s a tough question. I love Miu Miu. They’re like the “it” brand at the moment. I’ve worked super closely with them for the last couple of years. I love working with brands that just resonate and like I see myself in. I also love LOEWE, JW Anderson, Simone Rocha, Marni, Acne Studios, and Prada. I like brands that make me feel interested. As much as I love a Chanel and a Dior, of course I do, but I love brands that are trying to push the envelope. That’s what fashion is, and that’s what excites me.

Do you ever think about how different life would be if you didn’t start a YouTube channel?

Oh my God. I think YouTube saved me. Like, that’s such a big statement to make but I found YouTube in a time where I truly had nothing else. If I wasn’t a YouTube video maker, I was an avid YouTube video watcher. And I think being able to delve in and escape into other people’s lives really, and have a break from my own and the hardship that I was going through and being a sick kid, it meant so much to me. It was like being able to take a breath for two hours and take the weight off my shoulders a little bit. When I think about what I’d be doing now, I honestly have no idea. I mean, I think I would probably just still be sat at home in bed unable to leave the house. And there’s been times when that is still the case sometimes, despite doing YouTube. But YouTube has done so much good for my life in ways that I never could have even imagined. And I kind of fell into it. I think that’s what’s been the beauty of it. I never started my channel with any anticipation of anything that I’d be able to do any of this, but also of how it would change me as a person for the better and my confidence and my love for myself. I had no idea where it would lead, so it’s been like a journey of discovery. And it’s kind of amazing to be able to watch back a chronicle of my life over the last 10 years. The growth and the self-assurance grow and develop as my videos go on through the years. I think it’s a really special thing. Obviously, I have my days, but I think I’d be probably a much sadder person if it wasn’t for YouTube because it’s brought so much opportunity to my door over the years, but also it’s also allowed me to accept myself, and feel more comfortable in my skin. When I used to make makeup videos, my appearance was changing before me and you’re having to stare in the mirror and confront that by just putting on makeup. It’s special to see everything I’ve been able to do.

Dress Sour Figs / Shoes Malone Soulier

Has there been a favourite video you’ve ever made?

Oh, good question. I think for me, I’ve loved doing my birthday vlog. I’ve done a vlog on my birthday of my birthday since I was 11. I didn’t do it last year because I was on a break. I think it’s so special that every year I’ve reviewed my year and and detailed how it’s been. I think that’s a really special thing because I think when you’re a teenager especially, every year is such a big jump. And some years I’ve had good times and in other years it’s been really difficult. It’s part and parcel of like having an illness. But at the same time it’s been so special to look back on and be like, ‘I’m 11 today,’ ‘I’m 18 today.’ I think it’s so crazy how I’ve changed. I think it’s been a real way to reflect and my audience has kind of grown up alongside me and also watched me grow up. It’s been a way of me honouring each milestone. Alongside that, I’ve also loved and done quite a few videos called ‘Come with me to into hospital.’ I think that feels like something that’s super raw and vulnerable and a massive part of my life. I think social media is notoriously, not so much now, but at one point was known for only showing the good side of you. I really wanted to show the nuance of life and that not everything is good all the time and what it’s like for those who have luckily never spent time in a hospital. it gives people an insight into what it’s like to be someone who spent their life in the hospital. It doesn’t get easier just because you do it more. A lot of my viewers have been people who go to hospital because I think they probably resonate with me more than they can someone whose life is just a bit easier. 

Dress Melrose Haus / Shoes Malone Soulier

I think a lot of people connect with me in different ways. You may be going through a hard time and my story resonates with you, or you may have an illness or a visible difference, some mental health struggles, or none of the above. It’s just nice to see someone making the most of the cards they’ve been dealt with. It’s such a wide range of ages of people that have resonated with me and that I’ve been able to connect with. Very early on in my YouTube journey, I remember a woman who had cancer and she hadn’t left her house for years because she was so underconfident and just so angry at the world. She said she watched some of my videos and left the house that day for the first time. It’s times like that which make everything so worth it. Anyone can watch videos, but it’s those connections as well. It’s a connection to the outside world that I never had. Back then, my life was literally home or hospital. There was no school, there was no socialising, none. I think I matured really quickly because all my life was around doctors, nurses, and my parents. That was my connection with the outside and people outside of my bubble. 

Top and skirt Syra J

YouTube appears to have taken a backseat recently for you. Is there any reason for this?

I think I was getting quite overwhelmed at the time. I think it was during Covid when things started to slow down, or just after. I was feeling quite overwhelmed with all the social media platforms. TikTok was just on the rise during that time and my TikTok was doing really well. I also started it with no understanding as it was short-form content. It’s the complete opposite of YouTube. I felt very overwhelmed about maintaining it as I’m a perfectionist with my YouTube channel. I think when you’re younger and when something’s not so much of a job, it’s so easy to just post. My plan is definitely to come back but I think I just needed to have a break. Also, the effort to make a TikTok compared to a YouTube video is crazy. The people watching you on YouTube also are ride or die. They are spending 10 minutes plus of their day watching you. Whereas, with TikTok, I’m only really consuming my For You page. You don’t really need to follow anyone. YouTube feels a lot more genuine. Once you commit, you commit to the person. A subscriber in itself has a lot more value than one TikTok follower. Though I have 9 million plus followers on TikTok, my 2 million subscribers on YouTube hold more weight. 

I’ve just got my own place and I think that’s a really nice, different thing that I can talk about and make content around because I think for a while, I just didn’t know what to make content around. I felt a bit lost. I’m actually filming a video this weekend which will be a tour of my home.

You had your own CBBC television series, Nikki Lilly Meets, where you interviewed many high-profile names. If you were to bring the show back, who would be on your wishlist now?

Oh, that’s such a good question. I’ve always been obsessed with and in love with Billie Eilish. I’d absolutely love to interview her. I’d be interested in talking to her because she was so young when she came into proper fame. I know for a while, she was really struggling mentally with it all, so I’d love to get insight into what that’s been like. I just think she’s a genius. Her music’s got me through a lot. I have to say, that sad girl music was the key to my heart. Pedro Pascal, I love him. Paul Mescal. Ariana Grande, especially after Wicked would be amazing.

Dress Hisu Park

What’s been the most rewarding response you’ve received? The cancer story has got to be up there.

Oh, God, I’ve had people come up to me crying and shaking, and it’s the most insane experience because firstly, I’m not anyone of note. Like, that’s how I see it in my head. But two, you never know how to kind of react when people come up to me like that. I think I’ve had so many special stories that it’s hard to sort of narrow it down to one. I have one actually. A few years ago, I was a girl’s Make a Wish. Her last wish was to bake with me and spend the day with me. To be able to do that and make her last month a bit more special meant everything to me. There have been so many times where I’ve been in hospital and the child next to me is a fan and watching my videos. It’s a very full-circle thing. I used to watch YouTube and watch the likes of Zoella as escapism. That’s what got me through being a hospital. I think sometimes in this industry, it can feel a little bit like, ‘Oh, what’s it all for?’ I often have an identity crisis. But when you get messages like that or similar interactions in person, you’re reminded why you do what you do. Any time that someone with a visible difference has told me that seeing my videos has given them the courage to post their own or put themselves out there has always left me speechless.

You continue to be an advocate for chronic illness awareness. Moving forward, what changes would you like to see in the way we deal with and talk about it?

I think for a long time, especially with facial differences, it’s always felt quite like this taboo topic. Like, just because it doesn’t affect you, you don’t need to know about it. Know how to be a good ally to those who have it or struggling. For me, there’s never any issue on my part to answer questions. Of course, it’s a bit like, ‘Okay, wish I didn’t have to.’ But there’s never a problem with educating others or enlightening them on what you’re going through. Like, we’re happy to do that, but I think it’s the way that it’s gone about. If you have genuine intrigue and just genuinely want to learn, that’s if anything, really appreciated. Because I think these days, everyone’s a little bit more selfish and kind of keeps to their bubble in their own lives. You only sort of know what affects you. I think it’s so important to look outside of your bubble and see what’s affecting other people and how you could be a better ally or better human to others around you. So I think that’s my main thing. I think it’s important to know that everyone is going through something so it’s just leading with kindness. In my industry, there’s not many people still look like me in terms of clinical. There are so many more people now in terms of social media. I think it’s the people that brands want to work with or the people modelling that Fashion Week, I think there’s still a massive disparity with that. And I feel like we’ve come quite a long way in terms of race and things like that but still a long way to go. But in terms of minorities, disabilities, visible differences, and chronic illness, it’s kind of gone nowhere. There’s so much you can only scream and shout about, like wanting change and trying to advocate, you lose your breath and you’re like, ‘What’s this all for?’ People care about it for one day, and the next day they forget. 

Top and skirt Critter / Shoes Realm Shoes

It’s a box-ticking exercise for them.

Oh, for sure. It is super disheartening to feel like the box tick. There are times that I’m really happy to be at fashion shows and be there and grateful, but it’s like, ‘Then why is there any one of me here?’ You never really know whether you’re there because they value you and value what you’re doing or because it makes them look good., I just want to see more people in my industry that are like me. I think the more you see a difference, the more normal it becomes. And so it’s so important to normalise people with visible differences by giving them the same opportunities. So I think for me, what I want to see more of is more equal opportunity for a person with a visible difference or chronic illness compared to one that is normally able. I work with an independent social justice charity called Face Equality International. Our whole mission is truly changing things from a legal perspective, legislation, and things like that. That’s something super important to actually make real. Like, action speaks louder than words. If you really want to be more inclusive, if your clothes are for everyone, then let me see that. 

Your work has definitely gone unnoticed and won you several awards. You are still the youngest recipient of the BAFTA Special Award. Where are you keeping all your trophies?

So my BAFTA is on my mantelpiece. My Emmy award is huge so it’s just in a box. It’s really big. The base of it is the biggest thing. 

Dress Sour Figs / Shoes Malone Soulier

I wanna talk to you a little about music because I know you sing and love music. What have been some of your favourite albums this year?

I loved Billie [Eilish’s] album. That’s probably my favourite album of the year. I think Billie will always be my ride-or-die because I think it’s the music that most resonates with me. And she had such a good mix of the slower and uptempo songs. “Birds Of A Feather” took the world by storm. Then she had “Guess” with Charli XCX, and that was so good. There are so many other artists I love though – Lana Del Rey, Arctic Monkeys, The 1975, The Neighbourhood, Bakar, Steve Lacy, Rachel Chinouriri, and Phoebe Bridgers. 

We’re heading into a new year. What are some new projects/goals you’re looking forward you have set yourself?

Recently I’ve had a real shake-up with my team and I think that’s been really good because I think in this industry, it’s very easy to feel quite alone. Like, of course, you have a team around you, but you don’t have colleagues, you don’t go into an office space. When I make content, I do it predominantly alone. It’s very easy to kind of be like, ‘What am I doing? Where am I going?’ Like, again, ‘What’s this all for?’ I feel really positive about 2025 because everything has shifted a bit for me. I’m working on a few things. I’m going to be that annoying person that’s going to be like, ‘I can’t tell you’ but my goals for 2025 are just to do stuff that really resonates with me. I’m in a really grateful position now where I can choose what resonates with me, my journey, and my goals. I’m hoping to do a podcast in the year. Hopefully, I’ll be able to spend more time abroad, working and doing some more stuff in America. I wasn’t able to travel because I was too unwell for a lot of my childhood, and in the last year, I’ve travelled more than I ever have in my life for work. And that’s amazing. I think one of the best parts of life is seeing the world and new places. So hopefully more traveling, but not too much because it also does stress me out. 

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