12-year-old YouTuber Nikki Lilly on positivity, bullying and life with AVM

DtL: Hi Nikki! Could you tell us a bit about yourself?

Nikki: I was diagnosed with a condition called AVM (a rare condition that’s characterised by an abnormal connection between arteries and veins) when I was six years old. It isolated me for a while, as I felt like a misfit and lacked in confidence but I realised I couldn’t let my myself live that way anymore. So, I took up new hobbies such as art, baking, makeup artistry and singing.

DtL: What inspired you to set up your own YouTube channel?

Nikki: I think being at home a lot more often got me feeling quite bored, and so my dad gave me the idea of starting a channel. It’s a great place to combine all of my hobbies.

DtL: What is it like to be so young with such a successful YouTube channel?

Nikki: It feels overwhelming and amazing at the same time! Four years ago I never in a million years thought I would get this far sharing my happiness and positivity with my viewers aka best friends.

DtL: Who taught you to do your makeup?

Nikki: I taught myself to apply makeup – I idolise the makeup artists on YouTube who have taught me more advanced makeup tips and tricks.

DtL: What are your most prominent challenges living with AVM, and how do you overcome them?

Nikki: To be honest, from a young age I have faced quite a lot of challenges, but the hardest and most isolating have been my life-threatening nose bleeds that can start any time, any place and just ruin my whole day. Just having AVM brings such intense, nauseating pain to my forehead and right eye/face. But, I always try and see the positives every day and try my best to take my mind off of my challenges by doing things such as yoga, baking and painting.

DtL: What advice would you give to others living with AVM? 

Nikki: Just know, although our condition is rare, there is someone facing the same challenges, and feeling the same feelings as you out there; it will get better – just try to remain positive and be the best version of yourself you can be, letting your beauty shine out of the inside.

DtL: Have you ever experienced bullying/trolling/cyberbullying? If so how did you deal with the experience?

Nikki: Yes I have been bullied – not physically, but verbally in person as well as online. The cons of having a YouTube channel is the hate and negativity projected towards any human being who isn’t deemed ‘perfect’. I get called ugly, chubby and some people tell me to stop making videos and to fix my face! But the funny thing is, these things used to get to me but now I just feel sorry for these haters because they have nothing better to do than to try and make others feel worthless. Really they are the ones with the actual insecurities.

DtL: What advice would you give to someone who may be experiencing bullying/trolling/cyberbullying?

Nikki: The people attacking you are actually really insecure and are not happy in their own life – they pick you apart to make themselves feel better, but they will soon realise that this behaviour won’t change the way they feel inside. You are beautiful inside and out, and the most powerful beauty you have is your inner beauty, so let it shine!

DtL: What has been your proudest moment so far?

Nikki: My proudest moments so far include winning a Diana Award for fundraising for a charity that my parents and I set up when I was seven to raise money and awareness for people living with AVM, and hopefully one day find a cure! Also, winning a WellChild Award in 2013 for being the most inspirational child in Britain – it was given to me by Prince Harry! And last but not least, getting through every day and trying my very best no matter what big bumps I might encounter along the way.

DtL: Is there anything you would like to add?

Nikki: Lastly take each day as it comes and don’t let negative people drag you down, do more of what makes you happy so you can be the best, kindest and most positive version of yourself!

 

Check out Nikki Lilly on her YouTube channel!

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  • Depressed
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Louie Helyar on his trans journey so far…

My name is Louie, I am a 20-year-old trans man from Surrey.

This means I was born into a typical ‘female’ body, but on the inside I have always been male – I just had to transition to make my exterior a true reflection of my interior. I guess I first realised I might be trans when I saw ‘My Transsexual Summer’, a documentary about transgender people that aired on channel 4. I found myself incredibly jealous of Fox Fisher and realised that I wanted to be doing everything that he was doing.

I officially started transitioning on the day I came out; 31st March 2015 – which coincidentally is also Transgender Day of Visibility, a day dedicated to celebrating transgender people and raising awareness of discrimination faced by transgender people worldwide.

To be honest with you, I was absolutely terrified of coming out. To start with, I only told my best friend, and although he was extremely accepting of me, it took me about a year before I actually plucked up the courage to come out to everyone. I decided the best way to do it, was to come out on Facebook first – that way, I could tell everybody at once.

The response was no way near as bad as I expected – in fact, in the main, people were very positive and understanding. Of course, I have had my fair share of unaccepting and ignorant people but you have to take the rough with the smooth.

After I first came out, there was a period of time that followed where I felt really low and down about everything. Mainly due to the frustration of not being able to transition instantly. The waiting list on the NHS for transgender people is quite long, so I looked into other alternatives to speed the process up. I managed to save up some money to get the treatment privately. I started testosterone shots (hormone replacement therapy) on the 21st of December 2015 – a day that completely changed my life for the better. I then went on to have my first NHS GIC (Gender Identity Clinic) appointment on the 31st of March 2016.

Louie now!

I am now currently on a waiting list to be referred for surgery, which hopefully should be happening in about 8 month’s time.

Throughout my school life I was bullied a lot for being ‘different’, although I wasn’t even out as transgender at this point. I couldn’t pinpoint why I was different exactly, but I knew I was, and I guess others did too. It was a really tough time for me, but, things do get better and I could never have envisioned myself as happy as I am right now.

I am now making it my mission to help other transgender people; I hope that by sharing my story, there might be someone else out there who is going through something similar, that will find comfort and reassurance in reading this.

If I could go back in time and tell my younger self one thing, it would be to never put your happiness on hold because of someone else. It’s okay to be who you are, even if you don’t conform to what society (in the main) considers ‘normal’ – and if that means losing people along the way, then so be it, because they obviously weren’t meant to be there.

I’m a firm believer that everything happens for a reason.

 

Written by Louie Helyar

 

If you would like to share your story with Ditch the Label, get in touch!

RSS FORUM CHATS

  • ugly
    i asked one of my friend to be extremely honest w me abt my appearance and he said that i wasn’t very pretty and that kind of broke me bc it’s like adding up yk w the other stuff that people have said, i’m lowkey embarrassed not gonna lie
  • Feeling alone
    I don't really know why but I've been feeling alone and depressed lately. It's not like I'm alone alone but it feels like I am (idk if that makes any sense or not) I talk to people all the time but I don't really want to talk to them if you know what I mean. […]
  • Depressed
    Today I feel like rubbish. Not suicidal just had enough of life. Tired as fuck. Does anyone else feel the pain 😔😞😪😕💔😢
  • What are you dressing up as for hallowen?
    What is everyone going to be for halloween?
  • premier league
    kick off Watford vs Liverpool up the reds #YNWA come on liverpoollll offside oops 🙃 goallllllllll tooooooo liverpolllllllllllllllllll lets gooooooooooooooooooo
  • liverpool play today and PL starts again
    here's who's playing - watford v Liverpool Southampton v Leeds United Norwhich city v Brighton Aston Villa v Wolves Lecister City v Man United Man City v Burnley Brentford v Chelsea