STYLE

Nikki Lilly, 15, was in first grade when she received an earth-shattering diagnosis. Here's how she wound up finding happiness—and over a million new friends—where she least expected it. 

When I was 6 years old, my parents noticed something strange on my face. At first, they thought it was a bruise. But the pain and swelling persisted. I just didn't look normal. This led to many tests, scans and operations. Then, finally, a diagnosis: I have AVM (short for arteriovenous malformation), a condition that causes the blood vessels and veins in my face to get tangled, which means life-threatening bleeding, migranes and swelling. Even scarier? There's no cure. 

I had started off life as a chatty, super active kid from London who did everything from gymnastics to football (or soccer, as you call it in the U.S.), ballet to Girl Scouts. But once AVM took hold, my day-tp-day went from sports and activities to hospital appointments and staying home, too ill to do anything. I felt excluded, alone and isolated. 

Even before I got diagnosed, YouTube was always one of my favorite things to turn to on a bad day. There, you can find anything that interests you. 

Tough I was just 6, I was obsessed with makeup—the magic of it, how it could transform someone's confidence. It was 2010, and I loved watching tutorials by Zoella, Tanya Burr, Fleur de Force, Ingrid Nilsen, Blair Fowler and Kandee Johnson. Makeup was basically an art form to me. I would spend hours and hours mesmerized by how people channeled their personalities into it and expressed themselves through different looks and colors. 

While my siblings were at school and I was stuck at home, I'd use the family iPad to pretend I was doing my own YouTube tutorials. I'd even fake an American accent: "Hey guys! Today I'm going to be showing you my everyday makeup look!" I'd sneak into my sister's room and use a couple of her products, like lip balm and an eyeshadow palette. 

Eventually, I'd do my mum's and sister's makeup, pretending I was a makeup artist. I was awful at it at that time, but I didn't care. it was just fun. I hadn't felt happiness like that since before I got diagnosed. 

A couple years later, when I was 8, I started my own YouTube channel. I didn't even know you could actually become famous on YouTube! I just throught posting little makeup videos could be a project to put my energy into. It was something to do despite everything I'd lost. 

At first, my mum and dad were worried, because by that time my appearance had drastically changed. They knew that people online could be unkind to anyone who looked different,. So, we started with comments disabled. 

It took me over a year to get 100 subscribers. Over the last few years, it's skyrocketed to a million,. That's when I decided to enable the comments. I was so scared.

What I got was people thanking me for being brace enough to be on YouTube, showing them that if I could do it, they could do it, too. Of course there were also comments saying, 'you're so ugly', 'you're a monster' and 'what do you know about makeup?' But I've learned that a truly happy person doesn't take others down. 

In real life, I do get a lot of stares when I'm out and about. But makeup allows me to feel like I can conquer the day. I can enter a room and tralk to people without thinking, 'Oh no, they're looking at my eye.' People may still whisper behind my back, but they'll also come  up to me and say, 'I love your videos, you've really inspired me.' Makeup has allowed me to be the best verson of Nikki. 

The thing is, I don't conform to society's beauty standards—and I think that's why people like my channel. I can look different *and* still play with makeup. Makeup doesn't have a gender. Makeup doesn't have just one face. It's for anyone and everyone. And the more society sees people who look different, the less different we become. 

I still have days when I have no motivation and can't be bothered to put on makeup and film a video. I always tell people that it's so important to let yourself have that bad day—but also to remember that your current situation isn't how you're going to feel tomorrow or how life is going to be forever. 

There are so many amazing things now that I could never have dreamt of. I mean, having 1 million subscribers is wild! Winning an Emmy (for my CBBC documentary, My Life: Born to Vlog), collaborating with Instagram, sharing my story with you...I often have to pinch myself because I feel so grateful. 

I'd love to one day make documentaries—for my generation, by  my generation—about struggles like climate change, mental health, self-confidence, anxiety, eating problems and others things that don't get enough recognition. I just want to keep spreading my message that despite your situation, you *can* achieve your dreams. I'm an example of that. 

Little Nikki making videos on her iPad would have never thought it was possible. 

Through her nonprofit The Butterfly AVM Charity, Nikki Lilly has raised almost $1 million to help find a cure for arteriovenous malformation. To learn more, log onto butterflyavmcharity,org.uk or follor @nikkililly_.

Hey, girl! Just wanted to let you know that this story originally ran in our April/May 2020 issue. Want more? Read the print mag for free *today* when you click HERE. 

by Nikki Lilly as told to Amanda Montell | 6/10/2020