Diagnosed with epilepsy as a teenager, DJ, activist and founder Chelsea Leyland reflects on that period as one of the most challenging times of her life, telling me how “it’s hard enough just being a teenager, let alone having to navigate a chronic condition on top of that phase of life when all you want to do is fit in and be like everyone else.” Having to suddenly come to terms with this “terrifying reality” was difficult for multiple reasons. Not only did her age mean that she wasn’t equipped with the right tools to manage being diagnosed with a chronic condition, but she had seen her older sister Tamsin suffer with an even severer form of epilepsy from an early age: “I was entering this place of unknown but also something that I felt I knew very well.”

Leyland describes the condition as “a sort of devil on your shoulder”, explaining that “living with epilepsy is living with anxiety, because it’s always looming. You never know when it’s going to strike […] and that’s terrifying to know that, at any second, you could lose control.” Taking control is an important part of her journey with epilepsy and medicinal cannabis. After years of taking anticonvulsant medicines, she moved to medicinal cannabis as it was a “holistic medicine that was treating my whole body rather than just the symptom”. While anticonvulsants may have reduced the number of tonic-clonic seizures she was having, she reels off their negative side effects: anxiety, depression, insomnia, hyperactivity and memory issues to name just a few. She checks whether I want the truthful answer as to why she made the transition, warning that “it’s a little out there”, before telling me simply: “I listen to my body.”

“It’s always looming. You never know when it’s going to strike”

Two years prior to her transition to medicinal cannabis, Leyland recalls a healing she had after which she was told that she would “be working very closely with this plant in the future”. Although it “might sound quite woowoo”, it proved to be true, and trusting her body was key in enabling her to navigate the transition. “I just had this feeling in me that I was onto something, and I think it just allowed me to keep exploring and keep trusting, even though my physician and everyone around me was telling me that I was crazy and irresponsible,” she tells me. Faced with a condition which takes away so much, she had to trust that she “knew [her] body better than anyone”, reclaiming control.

Around 50 million people worldwide have epilepsy, yet it remains under-researched and highly stigmatised. Leyland recalls “just feeling so afraid, so anxious, so alone and isolated, and feeling like there was no one that I could turn to and there was no one to look up to. There was no one cool talking about epilepsy.” We see celebrities talking about conditions such as Crohn’s disease, diabetes and fibromyalgia, but not epilepsy, hence why she is so passionate about her activism. She doesn’t want anyone to feel alone, remembering what it’s like “like it was yesterday” and sending me the link to join Epilepsy Sisters, the WhatsApp community she created six years ago.

“People like us deserve to know if it’s genetic”

There has recently been much media coverage on the birth defects caused by sodium valproate – a medicine used to treat epilepsy – with Leyland using this example to demonstrate how “when it comes to epilepsy, we’ve still got a long, long way to eradicate stigma and just to find better solutions.” She worries about whether her own son, who turned ten months old on the day of our conversation, will develop epilepsy or not; despite doctors telling her family that the condition is not genetic, the fact that she and her sister both suffer from it suggests otherwise. “People like us deserve to know if it’s genetic, and you know, if there’s any way that we can avoid passing it on to our children.”

Tackling stigma is part of the mission of Leyland’s documentary, Sisters Interrupted, which premiered in November 2023. Alongside giving “a voice to this marginalised community” and unpacking the condition’s history, the “special relationship” between Leyland and her sister is at the heart of the documentary. Tamsin “lights up when she sees me in a way that she doesn’t with my parents”, Leyland tells me, describing her sister as “the purest form of self that one can be”. Yet selling the documentary has proved difficult; despite epilepsy affecting millions of people, Leyland has frequently been told that “it’s very niche”, with this just showing the importance of having better education and more conversations about epilepsy.

“People fear the unknown,” she says, and when they are not equipped with the information to help, “they might just walk past you on the street.” The steps are simple – “put me in the recovery position, protect my head, you don’t have to call an ambulance, but just make sure you stay with me until I come to” – but there is a gap in education. For Leyland, it’s always about “sensitivity and empathy”. “Epilepsy is so much more than seizures,” and so “if someone is brave enough to share with you that they have recently been diagnosed with a condition like epilepsy […] I think it’s just taking a little bit of time just to ask them how are you doing? What is that like for you? How are you feeling?”

Epilepsy can be “absolutely terrifying”, especially as “people don’t quite understand how stigmatised this condition is”, hence the importance of activists such as Leyland. “There’s still so much more that needs to happen,” but through “baby steps”, she hopes that change will happen, all the while ensuring that people with epilepsy feel “less alone”.

For more information on epilepsy, visit Epilepsy Society, Epilepsy Action or Young Epilepsy.