Embracing our differences with Nikki Lilly

YouTube sensation, CBBC star and Junior Bake Off winner, Nikki Lilly is living the dream life of most 14-year-olds. Unlike her peers, Nikki has already had 38 operations to help her disability, but makes sure it doesn’t hold her back. Nikki is supporting others to combat low self-esteem and negative comments.

Credit: Nikki Lilly

Nikki Lilly has an arteriovenous malformation (AVM) meaning there are no pathways between her veins and arteries causing her veins to expand and rupture. The condition creates life-threatening nose bleeds, facial swelling and migraines.

For people who don’t know what is an AVM?

I was born with an AVM which is short for Arterio-venous malformation. My condition is very very rare, in fact it happens to 3 people in a millionand for many people there is no cure. My symptoms include terrible life-threatening nose bleeds, facial swelling and migraines.

So far, I have had 38 operations both in the UK and USA. An AVM is basically a short circuit between high flow arteries and low flow veins because of an absence of capillaries, so when blood is pumped by the heart into my arteries at high pressure they go directly into my fragile veins which causes them to expand and rupture.

How did you feel when you were diagnosed and had to stop doing the activities you loved?

I was only six when diagnosed so I did not really understand that this was going to be a life long problem for me. I remember my parents and I going into hospital and three doctors talking to my parents, and my mum starting to cry.

Not only did I have a rare illness… there was no cure. Since that day I realized that my life wouldn’t be the same. I had to stop all of my physical activities like ballet, dance, football and I really missed my friends at school. I was so sad and lonely, all I kept thinking was why me?

Credit: Nikki Lilly

You started uploading videos to your YouTube channel when you were just eight, how did your parents feel about this?

My parents were worried at first as they didn’t want me to get cyber bullied, so to avoid me getting hurt they disabled all of the comments and kept a close eye on them. Luckily 98 per cent of the comments were really positive.

Do you feel this was an outlet to build up your confidence again?

My parents realised that I needed some connection with the outside world because I had had my childhood and confidence taken away from me when I became sick, so I needed something to keep my mind off my AVM that I could control. I showed my world to the outside world and my friendship with my subscribers grew. I think YouTube helped me in ways I never thought it could! It gave me a voice and a purpose.

Your videos cover everything from baking to beauty, do you think it’s important to keep things light?

I really enjoy making people happy and sharing my love of baking, makeup, singing, lifestyle and fun moments. I hope that my subscribers can see that I am really passionate about my content and I never post a video unless I am confident that I have done and edited it to the best of my ability. Smiles make the world go round.

Along with the lighter videos you also address your condition along with issues like bullying and feeling insecure, can you talk a bit about your thought process behind these videos?

I feel that it’s important to be able to talk to someone if you are depressed or being bullied. All too often a person suffers in silence because they do not want to burden friends or family with their invisible issues. Mental illness still does not get acknowledgement that it should, so in my videos I try to highlight the idea that it is OK to feel vulnerable and to feel and look different.

I filmed a video called it’s okay not to be okay in which I talk about my feelings and the fact that I have suffered with cyber bullying but it is important to remember that these comments say more about the bully than it says about you. I was also honoured to be asked to be part of The Duke of Cambridge’s launch of the anti-cyber bullying campaign Stop Speak Support with my video Words Can Hurt.

How does it feel to be a role model for people who are visually different or have insecurities?

It’s an honour for me to be called a role model but I just realized very early on due to my condition that life is very precious and we must not waste a single second. So basically, I try to be the best that I can be in everything I do. Never talk about what you can’t do only what you can do.

Being different has been very difficult for me but the support that I get from my family friends and subscribers has been invaluable to me and am truly touched when I get messages that I have helped somebody who is imperfectly perfect, like me, be able to feel more confident about the way they look and above all be happy within themselves.

You have over 500,000 subscribers on YouTube, it must be crazy to have that many people actively waiting for you to put up content?

Absolutely crazy! I remember being overjoyed when I got 10 subscribers! Believe it or not it took me six months to get 10 subscribers. It just goes to show that you just need to be patient; although when I was seven my videos were not the best quality but I just loved filming and editing videos, even though there were not many people watching.

It was my escapism as my condition meant I was basically a prisoner in my own home. I regularly post every Sunday, unless I am recovering from an operation and thankfully my subscribers enjoy the variety of videos as they vary from baking to makeup, fashion to me singing, or just keeping people updated about my life. I feel that my subscribers are like my extended family.

Unfortunately, life online means that there’s negative comments along with the positive ones, how do you deal with these?

I believe that negative commentsare more about the haters than about you. It’s very sad that someone can spend their time trolling and writing horrible comments online.

These people are cowards as most of them would never say these comments to your face. Being someone online means you have to grow a thick skin. I never react or comment to negative messages as this is what the troll wants. If they are particularly nasty I report them.

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Hanging with my fave x

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You’ve also been on CBBC Junior Bake Off and have your own slot now, how does that feel?

It feels crazy to regularly appear on CBBC as that seemed like a dream, but I am so lucky to be able to interview and chat to all different people in the public eye about their life as a teenager – good and bad – and how they got into what they do today.

It’s really strange that ‘Oh I just interviewed the Prime Minister in her office at 10 Downing Street whilst baking for her!’ Or even Jeremy Corbyn in his office at the House of Commons. I made scones and he brought his homemade jam. Or that I just interviewed Claudia Winkleman and chatted about Strictly Come Dancing. You simply could not make this up.

Who is your dream interview and why?

Meghan Markle because I would love to find out what the transition was like from being an actress to marrying Prince Harry. Barak Obama because I would love to find out how he got into politics and if he ever dreamed of becoming President.

I know she is not here anymore, but I would have loved to have interviewed Coco Chanel because she was a fashion and beauty icon and a strong business woman who shaped the fashion industry into what it is today.

You’ve also started your own charity the Butterfly AVM Charity, can you tell me a bit about that?

When I was first diagnosed with my AVM at age six my parents had nobody to turn to for advice as my condition was very rare and there were no charities. One day I said to them why don’t we start our own charity so that’s what we did.

Our charity raises awareness and helps support AVM sufferers and their families with up to date advice and raises much needed funds for research at Great Ormond Street Hospital and The University College London Hospital.

I am very proud to be part of the charity and with the research advancements that have been made due to our funding I hope that one day we can find better drug treatments and even a cure. We are a small charity with big dreams.

Credit: Nikki Lilly

What advice would you give to Enable readers who are insecure about their disability?

I believe that each and everyone of us is beautiful in our own way and we have so much to give in life. The problem is we live in a world where everything we see in magazines is air brushed and perfect.

Rather than celebrating our imperfections we are trying to look like everybody else. The most important piece of advice that I can give is that it is very important to talk to someone about your problems and your insecurities, believe that your disability is an obstacle that can be overcome and does not define who you are.

Not all of us are blessed with perfect health, I often wish I was. I cannot change the fact that I am different but I can try to fulfil my dreams to the best of my ability.

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