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Nikki Lilly knows how tough it is to be on the margins

YouTube star Nikki Lilly was six when she was diagnosed with AVM, which caused swelling in her face. But she says just because things are hard, doesn't mean you should give up

Nikki Lilly

Nikki Lilly is a YouTube star

British charity campaigner and television presenter Nikki Lilly has used her platform on YouTube to challenge preconceptions around people who look different. She’s gone on to present programmes for CBBC and was the winner of Junior British Bake Off in 2016. Ahead of the release of her first book, she took The Big Issue on a journey through her life. 

Up until the age of six, I lived a pretty standard life. I had so many passions and hobbies – everything from dancing to football. 

But then, when I was six, I was told something that changed my life. I was diagnosed with an AVM (arteriovenous malformation). An AVM is when the blood vessels in a certain part of the body are incorrectly formed, which causes an enlargement of the veins, leading to swelling, pain and lots of bleeds. My AVM has caused the right side of my face to change, which has been really hard for me to come to terms with and accept.

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But one thing that I’ve learned is that even when life is incredibly tough, it doesn’t mean you should give up on hope. In fact, I’m living proof that the very hardest of times can lead to the most magical experiences.

After I was first diagnosed with my AVM, I felt quite lonely and isolated. I was spending all of my time at home as I had become very unwell. I felt really disconnected from the outside world and from other kids my age. I started watching videos on YouTube as a form of escapism, imagining myself as part of the vloggers’ lives, like a friend.

That’s also when I started developing my passion for makeup, and one day I had the idea to film a video of my own. I put the family iPad on my dressing table and filmed myself rambling on about anything and everything I could think of. Little did I know that this would end up changing everything. During my first year on YouTube, I posted generic videos like makeup tutorials and hauls because I thought that’s what people wanted to watch. It took me over a year to get even 100 subscribers and I never got that many views, but it never mattered to me because I loved what I was doing.

One day, when I was 10 years old and in Denver for medical treatment, I decided to film a video called My Medical Story. Back then, I wasn’t sure what to call it but that title just felt right, because that’s what it was ALL about, sharing my story. Up until that point, my medical condition had been the overriding question on people’s minds.

I’d never talked about my appearance in my videos but I knew people would be wondering why I looked different and I thought it was super important to talk about it. If I had a video explaining my condition, then I’d be able to refer people to it and not have to keep explaining it, and then I could move on. I also thought it’d help people understand and raise awareness. I tried filming that video so many times, but it never came out how I wanted because I didn’t know what to say or how to say it. But, finally, I posted it.

The response from viewers was incredible and really helped my confidence. I was overwhelmed with all the messages of love and support. Their comments helped me to see myself for who I really am, instead of feeling defined by my medical condition.

From that point on, my condition was just a part of me that I tried to embrace. I no longer let it control me or how I lived my life. Another positive thing about that video is how it impacted my channel. Before, when I was focusing on fitting in and creating things I thought people wanted, the most views I’d get would be 2,000 per video. To date, my medical story video has got more than five million views, which is insane!

In 2016, when I was 12, I managed to build up enough courage to enter a CBBC show called Junior Bake Off. I definitely wasn’t a baking pro when I took part in the show but, somehow, I ended up winning and baking became another massive passion of mine, and a form of escapism for me. After I won, CBBC asked me if I’d be interested in having a show of my own called Nikki Lilly Meets, where I’d interview public figures about what they were like at my age. I love doing this and have met some incredible people who I’ve become friends with along the way.

It hasn’t always been easy – I’ve experienced negativity and hate comments online and I’ve learnt that not everyone in the world is kind. But if someone is hateful, it says much more about them and their own lives and insecurities than it does about me. I think it’s really important to show that life isn’t always perfect, and like everyone, I have bad days and good days, but hopefully if I share some of my harder times, it will help other people feel less alone in theirs.

Come On Life  by Nikki Lilly is published on October 1 (Walker Books, £12.99)

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