Liam Virgo talks to Editor Melissa Holmes about his experience of becoming disabled as a teenager, and his work to raise awareness of Functional Neurological Disorder.
At the age of 13, when most teenagers are busy with school, friends, and exploring independence, Liam Virgo faced an unexpected and life-changing turn. Liam found himself grappling with what would eventually be diagnosed as Functional Neurological Disorder (FND), a brain network disorder where the brain can’t send and receive signals properly. This ‘software malfunction’ can cause limb weakness, paralysis, seizures, walking difficulties, spasms, sensory issues, and cognitive problems. For Liam, “It was like my mind switched off. I was locked inside my own mind and body. My brain and body were just slowly shutting down.”
A BLUR
Liam lost the ability to talk for a full year. He was unable to get out of bed for three years, and says: “I couldn’t do anything. I needed 24-hour care.” It was a huge shock to the now-23-year-old and his family, and he explains: “I don’t really remember the early days of my FND, or even life before it. It’s a blur.” Liam recalls the disorder’s sudden onset, which progressed over a couple of weeks: “Something did not feel right.” One day at school, he found he could barely walk: “I had to be held up by two members of staff… I couldn’t do anything.” Liam had to leave school when things took a dramatic turn for the worse and he became unable to walk or talk. He was rushed to hospital and spent four months on a children’s neurological unit.
“When I was bedridden, I watched the world through a window,” Liam reflects. “I missed most of my schooling because of FND, because I wasn’t well enough to return to school. It’s had a huge impact on my life. It’s been painful and very isolating.”
Becoming disabled as a teenager – when life is just beginning, and independence is starting to blossom – must have been a particular challenge. “I lost all my independence; all my abilities and freedom,” he recalls. So how does Liam feel when he looks at childhood photos? “I don’t really like looking,” he admits. “Because that’s not me, is it really? I’ve changed since then – I’m a different person now.”
SO MANY UNKNOWNS
Recognising and diagnosing FND is challenging – it doesn’t show up on standard brain scans. According to the charity FND Action: “Advanced imaging, such as functional MRI, has started to reveal differences in brain network activity in people with FND,” but it’s usually recognised by looking at symptoms and eliminating other conditions. Symptoms can be short-lived or last for many years, and treatment is based on rehabilitation – ideally by a neurologist working alongside physiotherapists, psychologists, occupational therapists and other specialists like speech and pain therapists.
Ten years on from his diagnosis, Liam uses a wheelchair. His rehabilitation has been driven by his dreams, like standing for a picture for the first time in nine years, to more adventurous aspirations such as visiting London, and meeting his favourite celebrities. These goals have been crucial in motivating him and helping chart his progress. “I never gave up hope on achieving my dreams,” he insists. “When I was housebound, I thought ‘when I’m able to travel again, I want to explore’. So having goals has given me something to work towards. They pushed me to explore over a hundred towns and cities across the UK.”
While confined to his bed, Liam watched daytime TV shows like Loose Women. The programme gave him comfort: “Eventually, when I was well enough, the hosts sent me a video message,” he smiles. “Since then, I’ve met 16 of the panellists.”
His achievements have gone beyond personal milestones. Liam has enjoyed a tour of Parliament after writing a letter to the health secretary to raise awareness of FND at government level. “I wish more people knew it was a real condition,” he shares. “Just because you can’t see it, it doesn’t mean it’s not there.”
LOCKED IN
Liam still experiences challenging moments due to the traumatic impact FND has on his life. “I still feel the emotional scars of FND,” he reveals. “To this day, the impact of being locked inside my body… I still have difficult days. But 10 years on, I’m now learning to walk again. I can talk, I’m pushing to raise awareness, and I’ve been determined to achieve my dreams.”
Reflecting on his early days with the condition, he remains positive: “If I can get through all of that, I can hopefully get through anything.” A determined young man, Liam dreams of someday moving to his favourite city, London. He also wants to travel abroad to explore his Cypriot heritage, taste authentic keftedes (a meatball dish), and go in the ocean – something he’s been unable to do for ten years.
Importantly, Liam is keen to raise awareness of FND. “It’s a very real and debilitating condition,” he insists. “More education and support are needed.” He understands that increased awareness will lead to better support and recognition for people with invisible disabilities. And for anyone facing similar challenges? “Never give up hope,” he confides. “Even when something feels impossible, there’s always a way forward. Work through it, never give up on your dreams.”
