The social media star speaks to Alice Audley about living life with a chronic illness, the importance of using your influence for good and how your current situation is not your final destination…
I am a warrior.
I will fight and keep on fighting.
You can hurl your weapons; your arrows, your spears.
But you will not penetrate my armour.
My fire will burn, and keep on burning. My battle cry will be heard. Across the wind you will hear my howl.
I will not cower from you. I will not die.
You will listen. You will learn. You will accept.
I am a warrior. That is who I am.
Chainmail cloaking her chest, a blue-eyed wolf dog at her feet, a Macaw circling overhead, fire burning behind, Nikki Lilly looks fierce, bold and powerful. Exactly what she is.
It’s difficult to write about Nikki Lilly without sounding like a fangirl. But, after spending time with her over the past few months – both on the shoot and as she guest-edited this issue – a fangirl I am. At just 15 years old, Nikki has been through more challenges than most do in a lifetime, but she hasn’t let these diminish her spirit – she is positive, motivated and passionate. She is a true fighter; a bona fide warrior.
Nikki has an AVM [Arteriovenous Malformation], which is an abnormal tangle of blood vessels connecting arteries and veins, which disrupts normal blood flow and oxygen circulation. Nikki’s AVM is craniofacial and has led to facial swelling, and severe nose and gum bleeds. Since being diagnosed at 6 years old, she has had more than 70 major operations and visited Great Ormond St Hospital more than 350 times.
“I was born with my AVM, but it didn’t start affecting me until I was 6 years old. I started getting pain on the right side of my face and a few veins started appearing, but we didn’t think it was anything major. But then we went to the GP and the GP quickly referred us to a specialist doctor, who referred us to Great Ormond Street,” Nikki remembers.
“Because I was so young, I didn’t really know what real illness was like. I thought it would be like a cold; that I’d feel unwell and then I’d have some medicine and it would go away and I’d feel better. But I became quite sick, quite quickly… and I was in hospital most of the time and couldn’t go to school and that’s when I realised that actually my life was changing and it was something that was going to be chronic.”
After her diagnosis, Nikki had to give up most of her hobbies – ballet, dance, football, cheerleading and trampolining, and spent increasing amounts of time alone at home. It was during this time that she discovered the world of YouTube.
“When I had to give up everything, I was left feeling really isolated and lonely. I had lost all touch with the outside world and with all people my own age. I was just at home or in hospital. I started to watch YouTube videos, and found Zoella and some American beauty YouTubers. I loved make-up tutorials and how make-up could really transform someone’s confidence and how they felt about themselves.
“I used to film myself on the family iPad just mumbling about different things and one day I just thought to myself, ‘why don’t I make a channel and upload this?’. I don’t even think I realised that you could get subscribers or anything.”
After seeking the permission of her parents, Nikki was allowed to set up a channel and upload videos – but as long as they monitored them and the comments were disabled. The ability to create videos gave Nikki a sense of joy she hadn’t felt in a long time.
“The happiness I felt when making videos was amazing. When I was diagnosed, I lost such a sense of self; of self-confidence and self-worth. That chatty child, that outgoing child, that Nikki that I was before had completely disappeared. YouTube really helped me regain my confidence.”
YouTube has also gained Nikki a lot of fans. Her channel has more than one million subscribers, and amongst her popular uploads includes a cover of Lovely by Billie Eilish and Khalid that has more than 19 million views. These stats, however, are nothing compared to her TikTok account – which she only properly started in December 2019. There, Nikki has 1.4 million followers and her top video – only the fourth she uploaded – has 94.7 million views!
“I think that TikTok numbers are numbers that you won’t get anywhere else. I went from having 100,000 followers to 500,000 the next day. You would never get that on YouTube – ever. I was so gobsmacked – my YouTube took me over a year to get 100 subscribers. I’ve never seen that [TikTok] growth before.”
With large audiences across YouTube, TikTok and Instagram, increasingly brands are getting in touch and Nikki is starting to think about management.
“I’ve never wanted to rush into things, and I think my parents have been really good at not just finding any old person to work with – they really have my best interests at heart. We’ve talked to managers and are talking to people now.
“What I really want is someone who’s not just going to focus solely on YouTube, or solely on the TV side [Nikki has a series with CBBC called Nikki Lilly Meets. Guests include Theresa May, Katie Piper and Jeremy Corbyn]. I need someone who can do both worlds, as that’s what I want to do in my future.
“If I could wave a magic wand and have a perfect manager it would be someone who I would have a great connection with, and would not just be completely business based, they would be a friend too.”
In terms of what type of brand work Nikki would like to do, top of the list would be to create her own make-up or skincare line.
“I would love to do a collaboration with Makeup Revolution – that would be a dream for me. I remember when SophdoesNails did her first collaboration with them, I thought ‘oh my gosh, if I could ever do that one day it would be amazing’.
“Eventually, I’d love to create my own makeup line. And my goal would be to have people from all walks of life be in the campaign. I think that there are more people challenging what is conventional beauty now – and I would want every single person there.”
Promoting inclusivity and diversity is incredibly important to Nikki, as is raising awareness for charities. Nikki has worked with the likes of Alzheimer’s Research UK, Stand up to Cancer and Jeans for Genes.
“I think it’s really important for people on social media to use their platforms for good. There are so many causes out there that need support – and it can be hard for some charities to be seen.”
Nikki actually also set up her own charity called The Butterfly AVM charity.
“We set up the charity in 2012. One of the main reasons we set it up was because there wasn’t much information about AVMs out there, and the stuff that was there was really scary. It was really to help raise awareness for AVM, help raise funds for research and treatment, and also be a point of contact for other people who were finding it hard to cope with their children having AVMs.
“It’s been incredible. We’ve seen and spoken to so many people across the world, and we’ve raised three quarters of a million pounds for research – that money goes straight to a researcher who’s dedicated to finding a cure. “We’ve done so much already – we’ve found the genetic mutation that causes AVMs.
“Eight years ago, we wouldn’t have even really known what an AVM was, and so the fact that we can now provide definitive symptoms for people and provide doctors to look at – it’s everything we could have hoped for and wanted when I was first diagnosed.”
Nikki’s charitable campaigning and presence on social media has caught the attention of mainstream press and awards ceremonies. She has been a guest on Loose Women and This Morning, and has won both an Emmy and a BAFTA. At one of our editing meetings in London about this issue of Blogosphere, a man came up to her to tell her how much of an inspiration she is and how his daughters would be so sad they weren’t there to meet her. It’s a lot of fame for someone who’s still so young – how does she stay grounded?
“I just remember where I started, where I came from, my roots. I started this as an escapism from the hard days. I think online lots of people can appear that they’ve got their life together, but a lot of people haven’t. I hope I can be that sort of light that keeps it real. If I’m having a bad day, I talk about it.
“It’s totally fine to make your profile a highlight reel, but make it clear to other people that it isn’t your whole life. I do wish there was more honesty and reality on social media.”
Honesty and reality is something that Nikki is going to be continuing to concentrate on.
“All of the people I’ve interviewed for Nikki Lilly Meets have been so open and honest when talking about important topics, such as anxiety, depression, self-confidence and how they have affected them; which I’m so grateful for so I’d really love to continue that.
“I can’t believe it’s already 2020, there’s so much going on. Working with you has been insane, it’s been something that’s been on my bucket list, so the fact that I’m doing it now and that you’ve made me your first ever editor-in-chief means so much – thank you for trusting me.”
With Blogosphere ticked off the bucket list, what else has Nikki got in the pipeline this year?
“I’m very happy that I’ve also recently become an Ambassador for the charity Changing Faces, so I’m looking forward to being able to work with them more. “There is so much pressure on my generation to convey themselves a certain way and to fit the mould of what society thinks is perfect. We are constantly presented with airbrushed ideals of what we ‘should’ look like. I want to challenge that.
“It’s also super important to me that I keep campaigning and raising awareness for my charity, too. I don’t want another person to feel alone and I won’t give up until definitive treatments are found and the clouds of uncertainty are removed from AVM sufferers and their families’ lives.
“I hope that my little corner of the internet can be a symbol of hope that people need to believe in themselves; to know that it’s okay not to be okay, to know that a bad day doesn’t equal a bad life, and most importantly a symbol of all the reasons why you should keep fighting and never give up. “I want to show my viewers that despite my illness I can make the most of every day and live my best life.”
