Influencer Nikki Lilly: ‘Disabled people are at the bottom of the barrel – we need more allies’

Nikki Lilly started crying when she saw her portrait – a hyperrealistic pencil drawing that captures the slight slope of her smile, the veins around her eyes, the swelling on the right side of her face. For the first time, she saw her beauty through someone else’s eyes.

“I was in shock, and taken aback by how incredible it was,” says 20-year-old content creator Nikki, who has a rare condition called arteriovenous malformation. “I was speechless at the talent. Then I think the realisation set in that I was looking at myself. We never perceive ourselves in the way others perceive us.”

Nikki has spent much of her life behind a camera – she started vlogging for YouTube when she was eight years old – but this was different.

Artist Kelvin Okafor spent hours getting to know her so he could capture her essence for the portrait, which is part of his new exhibition Drawing Awareness at London-based gallery Hope 93. It celebrates people with facial differences, including Nikki Lilly, TV presenter and activist Katie Piper, model Winnie Harlow and musician Seal.

“My community has been one that has been long underrepresented, and not seen as beautiful or worthy. It felt special to have someone who was so talented putting thousands of hours of their life into this cause – investing in me while he drew me,” Nikki says.

“I think the biggest allyship and support you could ever give any community is your time,” Nikki adds.

Nikki herself is doing extraordinary work for representation. She’s a content creator with 9.4 million followers on TikTok, a BAFTA and Emmy-winning television presenter, a campaigner and author. She has just returned from walking the carpet at the Cannes Film Festival. 

But she has had a challenging life. At six, Nikki started experiencing unexplained changes in her appearance – large veins in her face, swelling, bleeding gums and nosebleeds. She was diagnosed with arteriovenous malformation, an abnormal tangle of blood vessels with serious complications.

“A lot of my life till now has been me trying to accept that change and mourn my old life and my old appearance. We all have insecurities. We all have things we struggle with. Mine are just a bit more there,” Nikki says.

She suffers with chronic and often debilitating pain and nosebleeds which have, at times, left her in a coma. She has had more than 100 surgeries. But there is no cure.

“My appearance, if anything, is the least hard part about my condition. It’s all the physical stuff that comes with it that’s traumatic, that takes a toll. It’s all that stuff that makes living with an illness so debilitating,” Nikki says. 

“I get pain most days. I take medication, but it’s still something I deal with. I think the hardest part of my condition is the uncertainty of it. There’s no cure. Everything I do is to lessen the symptoms so my life is more liveable and tolerable.”

Nikki struggles to remember her life without pain. Sometimes even the simplest of tasks are difficult.

“I can get severe eye pain where I have to take strong painkillers, and they can knock me out for the day, or I struggle to go to sleep because I’m in pain. It affects every facet of my life. When you’re in pain, you can’t just live a normal life. It’s bad and it’s constant.

“There’s nothing to stop it. I think that’s what is a struggle sometimes, knowing that there is not an end in sight. It’s not like you have a treatment, and then you’re fine or in remission. It’s tiring just functioning when you have pain.”

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Nikki distracts herself with her videos, makeup or baking – she was on Junior Bake Off when she was 12 – and she has a strong support system around her. Nikki’s mother gave up work to care for her after the diagnosis, and she has not gone back since. She joins Nikki on trips in case she has a bleed or other health complication.

“You don’t have autonomy or independence. I’ve grown up so quickly and I’ve experienced incredible things. But when you have an illness like this, or just any disability, your growth is stunted because you don’t get to experience a lot of independence that you otherwise would be able to as an average person,” Nikki says.

Social media has helped Nikki connect with people with arteriovenous malformation and other facial differences around the world – a community with shared experiences. But having millions of followers online comes with hateful vitriol, which for Nikki Lilly is almost always directed at her appearance.

There are times when Nikki struggles with her mental health and feeling as though she does not belong.

“I spiral a lot, and I overthink a lot, and I just get very anxious. I was at the Cannes Film Festival last month. I was on the carpet and before I went on, I was like: ‘Guys, I’m gonna throw up.’ I was so anxious. It never becomes normal to me. I always have insane imposter syndrome.”

Despite feeling confident with a camera in her hand, a live audience and the flash of photographers taking her picture feels far more daunting. She is no longer in control.

“It’s probably insecurity. I’m not very self-assured. A lot of people think I am because of what I do, but people forget I talk to a camera – an object that can’t judge me. I’m quite introverted. Even though I am a chatterbox, I get my energy from being alone. It feels very alien going onto a carpet with hundreds of cameras. I don’t really like people taking my photo. I kind of freeze.”

Nikki Lilly was overwhelmed with support after she walked the carpet in Cannes – and she knows that putting herself in a place where the eyes of the world are on her is vital for representation for the facial difference community. People feel seen.

She feels lucky to be in a job where she can manage her own time, and her team is accommodating and supportive. But she worries for others with chronic illnesses who feel pressure to stay in regular employment, particularly in the current political climate.

“It’s very difficult to work, especially if you don’t have a workplace that feels accepting. It’s rare in the UK to have one that is, which is why a lot of disabled people can’t work and have to rely a lot on their caregivers,” Nikki says.

She adds she feels the world is “going backwards”, amid plans to cut disability benefits in the UK and with the rampage against disability, equality and inclusion (DEI) in the US. “I feel like we’re at the bottom of the barrel,” she adds.

Amid this turbulent landscape, representation is even more important. Nikki Lilly hopes that the exhibition Drawing Awareness will spark compassion and ignite activism.

“I hope that more people become like Kelvin, where they want to be an ally, and they want to scream and shout for our community when it often feels like we are voiceless, or we are the ones doing all the advocating. It should almost be the opposite. It’s the people outside of it that should advocate for us,” Nikki says.

“Whether it’s enlightenment or awareness, I hope that whatever it is, people just come away a better person for it and more aware that if they see someone that has a facial condition in real life or online, they show them another level of empathy and care and just see them. 

“I think all we want is to just feel seen in society. I hope people are inspired to make a change and use their voice. Although I have become a little bit of a speaker in my community, I can’t talk for everyone. I can only talk for myself. One voice is just a drop in the ocean. The more voices, the more allies, the better.”

Drawing Awareness will take place at art gallery Hope 93 in Fitzrovia, London until 3 July. Founded by Aki Abiola in September 2024, Hope 93 is a bold new venture striving for change and greater representation through collaboration in the art world. With an inclusivity mission at its heart, the gallery features the works of both emerging and established artists.

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