Nikki Lilly

For a world that values perfection whilst filtering reality, celebrating difference has never been more important. Nikki Lilly is more than an advocate, in her story lies true resilience, vulnerability and beauty. From navigating chronic illness and challenging long-held beauty standards, Nikki’s journey is anything but ordinary and that’s precisely what make it important. Her heartfelt and open honest challenges the complexities of growing up too fast, navigating the good and bad of social media and that deep desire to connect with others but even more importantly herself.

Alice

Hey Nikki! How are you? It’s been a hot minute since your digital cover shoot!

Nikki

A little bit tired. I’ve had a busy week. I went back to Paris for like five hours and now I'm back. So, I'm trying to get back into the swing of things. I went to Paris, not for fashion this time but for something else, it was so quick, so I just feel so disorientated. I think it’s just the fact that I'm in a different country. I know it only taken as long as it takes to get to Manchester, but it was all a bit disorientating.

Alice

But when you have a chronic illness travel is also a whole other ball game. I don't think people realise the effort it takes to get up every day let alone go somewhere else. Dealing with symptoms is hard enough, but when you have to travel, it just hits different. I know it hits me like a truck.

Nikki

You’ve hit the nail on the head. There's so many more things you must think about that for someone else it's just such an afterthought, even me making sure I have my tablets and have spare in case something happens. There was a time where I went to Paris with a friend, and we were on the Eurostar, and there was a strike with the Euro channel. We were literally half an hour from London, but we had to go back to Paris. I remember thinking I didn’t have things I needed, tape for my eye, tablets, and I was so, so stressed. For me, I'm sure you feel the same feeling, feeling out of our control. So, anything I don’t plan is hard. I'm not very good with dealing with things that just happen and needing to adapt to them.

Alice

I'm the same. Throwing me off a routine or a plan is kind of disastrous.

Nikki

Literally! Every day I write my to do list. It's more to do with the feeling of having some control over my day.

Alice

That makes total sense, and especially when it comes preparing for travel. From the very beginning of booking a trip before you even go you are planning ahead. And as you say, something really minor to someone else, which might easily adaptable, can put you in a position which can really disrupt your life.

Nikki

It’s often things others wouldn’t have to think about like knowing where the nearest hospital is. Often people don't really have to consider why they would need it. Even when I travel with brands on trips, my mum or a friend ends up having to come with me mostly for needing them to almost be a carer if something was to happen. It’s difficult because you never really feel like you have full independence,

Alice

It can be extremely hard not to have the freedom you crave. It’s strange to be used to the first thing you do when planning travel is Googling the phone number for emergency services. It may be normal for us but really, it’s not the most normal thing people think about.

Nikki

I have a bag, because my biggest thing is I can get nose bad nose bleeds. And for the last decade, I've traveled with a bag, containing a bowl and tissues in case I need it. We call the bag Boris. I've always got to be on the ball. There’s just so many other things, I need to have. It's so unglamorous when you think about it and it's super taxing.

Alice

I think it's hard when you grow up and you see everyone gaining so much independence, and they don't have to think as much about emergencies and catastrophes. I think you still worry about not having that natural ease and innocent approach to life.

Nikki

I'm never in the moment because I'm so worried about something happening. When I turned 21 in July It was the first time that I'd gone on a night out. Not even clubbing we just went to a couple of bars. I kept saying to my friends, I just want to feel 21 for a day, I just want to feel my age. I feel like when you have a chronic illness, and you grow up with it, you're completely plucked out of innocence, reality and normalcy.

I didn't have a childhood. I always say that I am so overgrown in the sense of my mentality and my life experience but I'm so stagnant and kind of undeveloped in just normal life experiences. It's like, I'm here in two different places. I think that's what I always found so difficult, I couldn't relate to people my age. I was going off to have like, my 30th surgery in America, and my friends were experiencing someone liking them. It's incomparable. Of course, everyone has their thing to deal with, but when it's something chronic it’s so hard explain to people or for people to comprehend.

Especially when you're younger, kids don't really have a concept of what chronic illness is. Even I didn’t, I was like, Oh, this is going to go away like a cold. And then you realise it doesn't. You then realise, okay, well, I guess this is my new reality and I have to learn what that means. I'm a completely different person because of everything I've gone through, and there's that weird thought of what would I be doing if all of these things were different. Would I be at university? Would I have done this? Would I be in a relationship? I think there's so many questions, because when you have an illness, your life just takes a completely different path.

Alice

As you say, there's beautiful parts that come from it. And a lot of it, I think, comes as beautiful characteristics, important morals and core values. We gain a lot of empathy. But I don't think that takes away from the amount of grief that people feel about not having the rite of passage and the normal life they thought they may have.

Nikki

I used to love my birthday when I was younger, but now I find myself dreading it. I’ve become a bit of a Scrooge, but lately I’ve tried to see it differently, as a day to appreciate the people in my life who make me feel wanted, loved, and enough. The ones who lift me up: my family, my friends, the people who make things feel lighter. Still, birthdays can be confronting. They’re a reminder that time is moving forward, but my health hasn’t changed. It’s like holding up a mirror to all the years that have passed and realizing I’m still living with this condition. Sometimes I think about the version of me that might have existed if things were different, the life she might have had. My condition was dormant until I was six, so while I know there was a time before, I don’t really remember it anymore. Too much has happened since. I just have the childhood memorabilia to show for it, the photos, the drawings, the videos of a little girl who had no idea what was coming. In those pictures, I look like a completely different person. There’s this strange mix of attachment and distance when I see them, like I’m looking at someone I used to know, not myself.

Recently, I had to watch old family videos for something I was doing for work. I thought it would be sweet, but it hit me harder than I expected. Seeing that little version of me, so innocent and unaware of what was coming, made me feel protective. It’s strange watching yourself before everything changed. I just wanted to reach out and tell her that life was about to get harder, but she’d still find her way through it.

Alice

I can imagine that starting your YouTube was important to find your safe space, your comfort, and your community. But at the same time as much as the whole point of social media may have been to connect people and create a community, at the same time, and maybe it’s naivety but we don’t always think of the flip side with judgment and a running commentary. How have you come to manage that side of social media?

Nikki

When I first started making videos, I was honestly quite naive about hate. It existed, but not in the way it does now. In the beginning, the only way I was allowed to be on social media was with my comments turned off, that was something my parents and I agreed on. I was still very young, and it made sense. It let me do what I loved, but in a way that felt safe.

My parents understood the world a lot better than I did back then. I was living in my own little bubble and didn’t really see how cruel people could be. When I got ill, I didn’t realise that my changing appearance might make me a target. They did though. They knew people could be unkind, and they wanted to protect me from that for as long as possible.

After a couple of years, I asked if I could turn my comments on. My parents were a bit apprehensive at first, understandably, but they also knew I needed that sense of belonging. I wasn’t going to school, I didn’t have any friends, and most of my time was spent at home or in hospital. Talking to my camera felt like a means of escape, a small way to feel part of the world again.

When I finally turned them on, I received a lot of lovely messages, so much encouragement and kindness. But for every ten kind comments, there was always one cruel one. I remember someone calling me a monster, and I was completely shocked. I couldn’t believe it. I’d had people stare before, but never something so direct and harsh. It was the first time I really understood what online hate could feel like, and how words can linger even when you try your best to ignore them.

Alice

How do you even wrap your head around that at such a young age?

Nikki

I found it really hard to get my head around at such an early age. I was still learning to accept myself, and it just felt like another thing reaffirming that I was this monster, ugly. At that age you absorb everything, and it really made me question whether I wanted to keep doing social media.

The conversation I had with my parents reminded me I was doing it out of choice. If I wanted to stop, I could stop. They made me feel in control again. But I came to the conclusion that if I stopped, I’d be letting the comments win. Of course, that didn’t mean they stopped hurting, they did.

I grew up incredibly insecure after my appearance began changing, so I believed everything people said. But over the years I’ve realised that those comments say so much more about the people writing them than about me. Even on my darkest days, I’ve never thought to sit on someone’s page I don’t know and comment something cruel. I’ve got better things to do. It’s sad that some cowardly, nameless, faceless people think they can say whatever they want just because there’s a screen between us.

I did a video recently about people cutting off the right side of my face in photos or using AI to mirror my face and say things like, “I’ve fixed it,” followed by heart emojis, as if they’re doing me a kindness.

Some even commented things like, “Oh, you could have had so much potential.” I couldn’t go into my comments without seeing it. It felt so passive aggressive because people have become so normalised to cruelty online, and it’s not okay. I wanted to speak up because silence says a thousand words. People should be held accountable, and social media platforms need to do so much more.