LONDON (Thomson Reuters Foundation) - Nikki Lilly used to wish the marks on her face were just make-up. Born with arteriovenous malformation, a life-threatening medical condition which causes dangerous nose bleeds, facial swelling and migraines, she sometimes found it difficult to fit in.
“Some nights I used to get a flannel, and wet it and scrub my face,” she recalled. “I couldn’t believe it was not going to come off.”
Now the 15-year old is using her popular YouTube channel to de-stigmatize her condition. On Dec. 1, she will be honored for her work as a mental health advocate, becoming the youngest person to receive a British Academy of Film and Television Arts(BAFTA) Special Award.
Today over a million subscribers tune in to watch Lilly’s upbeat “vlogs”, in which she talks about teenage interests like school, make-up and baking, as well as weightier topics including disability, cyber bullying and mental health.
Growing up online, Lilly is acutely aware of the possibilities and pitfalls of social media. Although the internet has given her a voice, it has also pitted her against an unforgiving influencer culture.
“When you’re having a good day, if you go on social media and you scroll for too long it does affect your mood,” she said. “It totally affects how you view yourself.”
The airbrushed quality of Instagram, especially, can take a toll on young women, Lilly said. “They can’t help but to look at those images and feel less worthy.
“Although I look different, I still do worry about the same things every teenager does,” she said. “I used to feel pressured to wear make up to school.”
Although she says she has never experienced bullying at school, Lilly has had to contend with hateful comments on her YouTube and Instagram channels. In one video, she lists some of the insults: “freak”, “disgusting”, “monster”.
The platforms could be doing more to combat cyber-bullying, she said. “I don’t feel that they are very proactive. I have to remove a lot of (the comments) and they don’t really see them.”
Lilly said platforms should consider trialing a 24-hour text service for teens to access counselors. Strengthening their policies on abusive behavior and removing offending accounts should also be a priority, she said.
“It is hard because there are so many accounts out there,” she said. “But I think that there is a long way to go, especially for YouTube and Instagram.”
Lilly has been the subject of two documentaries, and last year began presenting her own show on Britain’s public broadcaster, the BBC. She plans to expand her advocacy work, educating teens on issues such as body image and climate change, and to keep spreading the message that “you’re enough, and you’re not alone.”
“I’m the way I am for a reason,” she said. “I hope I can uplift people and … bring them a bit of hope when they’re going through hardships.”
Reporting by Rosa Furneaux; Editing by Ros Russell. Please credit the Thomson Reuters Foundation, the charitable arm of Thomson Reuters, that covers humanitarian news, women's and LGBT+ rights, human trafficking, property rights, and climate change. Visit news.trust.org
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