Nikki Lilly is a British TikToker, influencer, and activist. As young as eight years old, she began sharing her story via vlogs, talking about her personal experience with arteriovenous malformation, a rare medical condition. Whether discussing facial differences, mental health, baking, or beauty, her viewers connect to her utmost authenticity and positivity. At the age of 14, she was awarded the 2019 International Emmy Kids Award for her episode of the CBBC series My Life, and has continued to grow her platform on TikTok since. With 8.9 million followers on TikTok and 415k on Instagram, she has built a beautiful community.

We hear from Nikki Lilly about social media, inclusivity, her dream dinner guests, and hopes for the future.

Read the interview…

Following on from your YouTube success, how far has TikTok helped you to carve out your own voice and share your message with the world?
Well, I think TikTok is a special platform in that it gives you the chance to reach an insane scale of people through short form content, which is very different from what YouTube was back when I started! It has allowed me to carve out and find my own voice, as well as share my message because it kind of catapulted me towards an audience of people who wanted to learn and to know more. From the get-go, I’d say TikTok sort of distinguished itself as ‘‘the’’ platform for educating and connecting with others about things we weren’t overly knowledgeable about or aware of before logging onto the app. Particularly for me, I can share my passions and what is important to me, such as the fact that I have a visible difference and raise awareness about my condition, whilst also coinciding that with my love of makeup, fashion and baking irrespective of the fact that I have that visible difference and chronic illness. TikTok has become my biggest platform and I think that’s insane! When I first started, I was honestly just going into it blindly, I never thought it would allow me to create a presence on the platform that I now have with nearly 9 million followers – which is mind-blowing because I always thought that would be ‘the’ YouTube for me, but it has been an amazing journey so far and I’m very grateful. Also, amplifying my voice has led to other opportunities outside of TikTok and its has given me the opportunity to work directly with other brands regarding campaigns and other projects to do with diversity and inclusivity. I think that brands are much more aware of the influence TikTok has and therefore are realising the imperative need and importance of inclusion.

How do you navigate your relationship with social media and its rapid pace?
I’d say my relationship with social media is bittersweet, it’s my favourite place in the world and it’s my job but it’s also my least favourite place and can be very toxic and mentally draining at times. Even though it’s a lot more real these days, it’s ultimately a highlight reel of the best parts of your life. We are humans and can’t help but scroll aimlessly, creating comparisons towards others – regarding how they look or the lives they present against ours. There is so much hate and a different level of hate, for me due to looking ‘different’. It sadly can definitely have a negative impact on you mentally, but then at the same time its where I found my community and my safe haven. It’s where I found my only source of therapy and escapism, especially when I first got diagnosed with my condition… I was at home feeling incredibly alone and isolated, and it essentially saved me. So, how do I balance it? I guess I am still trying to navigate that aha. I try to focus on what I can have control over in that respect, such as the content I consume and the impact it has on me, positive or negative – with who I choose to follow. That’s one way you can try to have a little bit of control over the world of social media and the rapid pace of it all. I really am aware of who I’m following and the content I see on my feed, like Instagram where you can curate that a little bit more. Every so often, I look at the people who I’m following and ask myself, does this person bring me joy, does their content have a positive impact on me and leave me feeling better off, not make me feel worse about myself, or my life and have a negative impact on me? Basically, Marie Kondo your feed aha. It can be so overwhelming being in this industry at the best of times, every day I constantly feel like it’s my first day on the job because of how rapidly it is changing and evolving, it’s difficult to continually adapt with the times, you’re sort of shooting blind and crossing your fingers, at least I am! It’s trial and error. I try to take each day as it comes in social media, because no two days are the same, however you must try and enjoy the ride as much as you can, it’s definitely not a linear journey. It’s paramount to have good offline relationships and connections too and try to create stability there where you can. Switch your phone off and set aside your social media life to prioritise things outside of social media too! I try not to get caught up in it.

If there’s a single message, you can share to young people what would that be?
Life is so tough; I’ve learnt that first hand with what I’ve been through with my health over the years. Tomorrow isn’t promised and I think we get so caught up in things and it’s completely understandable because that’s what we do as humans, but it is so important to take a step back and think how can I make the most of the cards I’ve been dealt with? It can be insanely difficult when you’re going through a hard time, it takes over everything in your life. I hope I can show young people with my videos and what I’ve done, it’s never too late to make a change. You have no idea how much power you hold and although you might not believe in yourself, you truly have no idea. I think I’m an example of that. When I started making videos, I did it for myself, I didn’t do it because I thought it would go anywhere or I could make a difference and I think that’s the beauty of it, is that a lot of these things we go into blindly. Know that it’s never too late to make a change and try to use the struggles you have faced to make a positive change, never underestimate the power you hold and the voice that you have to make a difference. Your words have so much value and so does your story, although you might not feel like it, you never know whose lives they could touch or the impact it could have on them. So just start, if there is something you’ve always wanted to do just go for it and don’t look back.

Your candidness and honesty online has harnessed a community of followers, encouraging them to express themselves. Has this helped you in navigating your own journey?
I think the fact that unbeknownst to me initially, my honesty and candidness has created basically a family online, has been the most beautiful thing to watch unfold. When I started making videos, I had no idea of the possibilities that it could lead to. The thing that’s been unbelievable for me is the community that I have built and the genuine support that I received from my viewers. It really does feel like an extended family and what a special thing that is. It’s definitely had a 360, full circle effect, me making videos has helped some of them with feeling more self-acceptance towards themselves or encouraging them to express themselves as well as share their story, but all of those things and the way its impacted them has had a following impact on me because they have given me such a safe space to talk about things, and therefore that’s allowed them to feel like they have a safe space to be themselves, which makes me so happy. The response kind of all bounced back on to me and it’s a beautiful thing.
An amazing woman who had cancer commented on one of my videos candidly and bravely sharing that she hadn’t left her house in over a year because she felt very depressed and lost her positive outlook on life and herself. After watching my videos, she shared that she left the house for the first time… now if that’s not something to spur you on to keep going and making videos, doing what you do and sharing your story even on the incredibly hard days, I don’t know what will. Comments and messages like that, are what continue to encourage me to pursue doing what I do. You know, when I receive negative comments it can be so difficult, and if I’m having a tough day, I honestly don’t want to pick up the camera and share what’s going on and what I’m going through however, comments like that and comments that say, “when I see your videos it’s a reminder that I’m beautiful just how I am”. Those are the only pick me ups I need to encourage me to keep going, navigating my own journey and sharing my own story. We’re all humans, we’re all works in progress and that’s okay. We make mistakes and we go through hard times, and we learn from them, evolve from them, and grow from them. We’re all learning, evolving, growing, and listening from one another.

What’s been your most cherished memory/proudest moment to date?
My most cherished and proudest moment, I have a few but will choose three. My first one would be back in 2016, I was on a show called Junior Bake Off, it’s the kids’ version of the Great British Bake Off which is a classic here. I had always loved baking and the show and dreamt of being on it but never felt good enough especially when I was diagnosed with my condition, it felt completely out of reach and thought it would never happen. So, when I was 12 years old, I finally applied for it and didn’t think anything of it but ended up getting through all the audition rounds and got on to the show and ended up winning it, which was absolutely insane! I’ve won and received quite a few awards but the reason that this had such a magnitude and weight for me and meant so much is because it was a representation of all the things I had overcome to be there. The fact that I was up against kids who didn’t have chronic illnesses or visible differences and was able to show that you can do anything, despite hardship and come out on the other side and even win! I was blind sighted; I really thought every round I got through I wasn’t going to go further. So, I think that was massive as it was something I worked so hard for and was a complete dream come true, I’d say winning Junior Bake Off back then is still such a huge moment for me. I also received an Emmy for a documentary that was about my life that came out a few years ago which is insane. To me it was just a camera following me on my journey with starting my YouTube channel and navigating social media but also being a teenager with a visible difference and a chronic illness. Also, the hardships and difficulties with that, however I didn’t think anyone would even watch it, so to receive an Emmy for that, is just amazing… that’s my life and so the fact that it was even acknowledged by anyone especially Emmy was beyond anything I could have imagined. I also received a BAFTA special award which was in recognition for the work I’ve done in advocacy for people with visible differences and things I’ve done on tv with my documentaries and interview series’. I was the youngest person to ever be chosen for that award, so I think that’s quite a big deal. Although, overall, my proudest moment is despite everything I’ve been through, I’m still here trying. I don’t think anyone will ever understand the immensity of what it’s truly like to have a visible difference and life limiting illness unless they have one, as well as the mental toll it all takes. I’ve had 95 operations and many of those come with a lot of difficulty, so I think my proudest moment is that I’m here and I’m trying my best to do what I can with the life I have, it can be unimaginably rough sometimes. It’s indescribable some of the hard days I’ve had in my life but I’m still here and I’m still going and still trying and that’s something worth being proud I guess I’d say.

If you could host a dinner with three of your idols, who would they be and why?
Ahh, that’s such a good question but I have so many! First up, it would be the worldwide and national treasure Sir David Attenborough, who wouldn’t want him at a dinner party?! He’s just incredible, he has single handedly been the voice of the planet – global warming, deforestation, climate change and so so much more. All of which we’re currently dealing with, he has seen the impact of all take place and tried his best to advocate. He has been the mouthpiece for the earth as well as raising awareness about all the different parts to it. David’s done so much, he’s impacted and educated generations upon generations of people, from both my age and to his age. 100% would be him, I think I could talk to him for hours, he has such a soothing voice as well aha! I just think he’s incredible and we are so lucky to have him and witness his work. My second idol would be Paul Mescal, I’m a little bit obsessed with him and his work. I love Normal People, the series he starred in, and the play he recently acted in, A Streetcar Named Desire. I also saw his new film late last year, Aftersun, which I have watched in the cinema around four times with different groups of people. I just adored it so much, I had to take everyone to see it, even though it’s devastatingly heart-breaking, it’s also just the most beautiful film I’ve ever seen and I’m such a fan of his. He also just seems like such a lovely person, I’d love Paul Mescal to be there please! Finally, if it could be passed or alive, I would love Vivienne Westwood to be there, that would be such a dream. She is an icon and such a pivotal part of the fashion industry, especially the punk rock movement in the UK becoming modernised. I’m such a fan of her work and she’s been an activist for sustainability. I saw one of her mottos in a book about her and it said “buy less, choose well. Make it last. Quality, not quantity”. She was passionate about upcycling and repairing clothes which is amazing and not done enough today. I would love to speak to her and pick her brain on so much. She’s incredible. I’ve read so many books and articles about her, so I would love her to be at the dinner of course. If I could have one more, I would have to invite Zendaya to be there. I just love Zendaya, I have followed her for years and she was such a pivotal part of my childhood when she used to be on Disney Channel. It’s also how she’s pivoted acting roles to so many of my favourite shows and movies like Euphoria and the recent Spider-Mans. I just think she seems like such a cool person and would love to be friends with her. I love her and her work and would love to have her as a best friend! So, if I could have 4 it would be these icons but if it was only 3, it would be Sir David Attenborough, Paul Mescal, and Vivienne Westwood.

What’s something that made you laugh recently?
I have a couple things that have made me laugh recently, one of them is the US series of The Office which I’m rewatching for the 100th time and am absolutely obsessed with. If I need a pick me up, it’s my comfort show and always makes me laugh. Another thing is I was having a rubbish day and one of my friends knew that and sent me a TikTok which said if you were having a bad day, take a sad song and sing it like it’s an upbeat rap song which was so funny. We were on FaceTime and rapping out a song which was probably the saddest song ever, it was surprisingly cathartic and got us laughing a lot! You’ve just got to laugh sometimes in situations like that. I think that’s pretty good advice, if you’re ever feeling sad and not having a good day, take your favourite sad song and turn it into an upbeat rap song aha.

What made you decide to share your story on the internet?
Well, when I initially started making videos, I didn’t really have the intention to share my story. As it really was just my outlook but when I started getting some followers and people interacting with my videos as well as people asking questions about my condition and appearance. I did see it as an opportunity to try to raise awareness about my condition as it is so rare but also about visible differences. When I was growing up, especially when I was younger there was no one for me to look to someone or relate to or an idol I saw myself represented in. Everyone was so perfect and so curated a cookie cutter ‘perfect’, the only things I saw were barbies or princesses or unscathed heroes in films which I could not relate to. So, I think part of why I wanted to share my story is because I think sometimes you have to be the change you want to see in the world, and of course it can be frustrating that it has to start with you but really if not now, when? And if not you, who? So, I think that’s how I saw it. I just wanted to make a positive change in any way that I could. For me, I saw it as an opportunity to utilise my little platform I had at the time, even if it helped one person to find out what my condition was and be educated about it. To open their eyes on what it’s like being someone with a chronic illness and visible difference, and that’s more than I could hope for. But also to show that you should never judge a book by its cover and that beauty lies within and that our differences are what make us beautiful. So, I think that’s what initially made me share my story on the internet and the hopes to connect with the outside world when I was constantly at home or in hospital and felt alone, not heard, and not understood. I had no one really to relate to or talk to. It was my outlet and my therapy I guess but it was for the hopes that it would impact just that one person positively somehow, someway.

Alongside creating your own charity and the support you give to others; are there any further projects or goals you’d like to create to continue raising awareness?
There are so many goals I have and projects that I’m working on and working towards. I’m an ambassador for the charity Changing Faces, which raises awareness about the discrimination that people with visible differences and disabilities face. It’s such an important empowering charity, the work they do is amazing and so needed and notable. So, I’m continuing working with them. Something that I’ve been advocating and really pushing for with them for a few years now is education about discrimination towards people with disabilities and visible differences being implemented into the school curriculum. Whether that be as part of PSHE lessons from the get-go of kids joining primary as well as secondary school. We are given some talks on anti-bullying, but ultimately there isn’t anything focused on the discrimination directed towards those with visible differences and disabilities. We have made some progress, but definitely not enough of course when it comes to race, sexuality, gender etc. However, in terms of disability and visible difference, I really feel we haven’t gone anywhere. There are so many more of us than ever before on social media sharing our stories, but education shouldn’t just have to come from the people who are dealing with the brunt of the discrimination against them. It should also fall onto the job of other people who don’t have disabilities and visible differences to make a concerted effort to educate themselves, and therefore educate others. I think school, teachers and guardians have a massive part to play in that. I also really want to do much more documentarial work around life as someone with a visible difference and raising as much awareness as possible, as well as educating others in the process. Studies have shown that only 1 in 4 kids said they would be friends with someone who had a visible difference, only 25% of children said they would be friends with someone that looked like me which is just gut-wrenching. That statistic has gotten lower post covid, I feel so disheartened for my younger self, the fact that its 2023 and we are actually going backwards. So, I want to do a documentary that investigates where that hostility comes from. I would love to visit Hollywood as in more movies than I could possibly count, the villains just so happen to have visible differences which I think is crazy. They feel they don’t have a developed character without adding a few scars, burns etc. and think that’s acceptable, I want to end this old trope and mindset for good. Children, especially from an early age seeing that in films can’t distinguish the two, are associating those of us with differences and conditions (who are just like them) to monsters, and people they don’t want to be friends with which is awful and so unfortunate. They are subconsciously taking that in and building a predisposition of us because of the content they are consuming. I also want to see if it’s because parents and guardians aren’t educating their children about it and are just staying naive or are schools doing the same. So, I really want to do more TV and documentary projects to raise awareness. There are so many different things I want to do and so many goals I have. I only left school and finished my A-levels last year, so I think the only way is up for me in terms of raising more awareness! There is so much I want to do and only the tip of the iceberg I’ve got so far, but I think social media has been such an amazing launching pad for helping me get towards that, including the TV projects I’ve done so far. I’m really excited and hopeful about the future and can’t wait to see what it holds.