The Software Crash: Navigating Severe FND and the Journey Back to Inclusion Before 2016 I was an active, healthy child. Then, in 2016, without warning, the ‘software’ in my brain completely crashed. I went from running around school to needing two members of staff to physically hold me up because my legs refused to work. Within days, I went from being a healthy teenager to one who couldn’t move or even speak. I was completely paralysed and non-verbal. For a teenager, losing autonomy overnight is a terrifying reality. It shifted my world instantly from future planning to a fight for survival. What is Functional Neurological Disorder? To understand my experience, educators must first understand Functional Neurological Disorder (FND). FND is a software crash. The hardware (the physical structure of the brain and nerves) is completely fine. But the software (the way the brain sends and receives signals to the rest of the body) has glitched. Because standard scans do not show software errors, young people with FND are routinely misunderstood. I faced medical professionals who suggested my condition was “psychological” or that my symptoms were purely a mental health issue.
Liam Virgo My name is Liam Virgo. I am a 23 year old FND advocate dedicated to raising awareness for Functional Neurological Disorder (FND), a condition I have lived with since the age of 13. After facing a sudden bodily shutdown in 2016, I now share my story to highlight what it’s like to develop a disability as a teenager and the reality of severe FND. Follow Liam on Instagram at: www.instagram.com/liamloveslondon
Because the brain's signals are disrupted, FND triggers a wide range of debilitating, involuntary symptoms. These can include sudden limb weakness, full-body paralysis, and uncontrollable tremors, alongside functional seizures, speech loss, chronic pain, fatigue and cognitive problems. In my case my FND was very severe.
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The reality of developing a disability as a teenager After four months in hospital, I was discharged from the hospital with a house full of medical equipment, including a hospital bed, a hoist, and a wheelchair. I wasn’t able to return to my old school but for a while I was placed in a special school. However, in the end, I had to leave as my body was deteriorating rapidly while at the school, and the staff had never come across someone like me who had FND before. The school environment was never going to be suitable for me with severe FND. I don’t really remember the early days of FND and life before it is a blur. I can only describe it as my mind switched off for six months and I didn’t know who or what anything was.
Developing a severe disability in adolescence brings a unique set of challenges. Adolescence is usually a time of growing independence. When severe FND hits, that trajectory is violently interrupted. The social isolation is acute; you quickly feel forgotten by the outside world. For schools, supporting a teenager who suddenly becomes disabled means addressing not just their physical needs, but the profound grief of losing their able-bodied identity. Navigating the education system outside the classroom When my symptoms escalated again and I lost the ability to sit up, the school environment quickly became unsafe. This led to my sudden and permanent departure from formal education. I could no longer navigate a physical classroom; instead, my care and life required the coordination of at least 20 different professionals. I had to leave school again for the second time as it wasn’t safe for me. No wheelchair was suitable for my needs. I lost the ability to sit up. I couldn’t tolerate sitting in an upright position. The only place I felt comfortable was on my bed. I became bed bound. I was bedridden and felt trapped inside my own body. However, the turning point in my journey back to learning was the implementation of a robust, highly adaptable Education, Health and Care Plan (EHCP). This framework allowed for the flexibility my condition demanded away from the school environment. FND symptoms —ranging from sudden paralysis and tremors to speech loss and chronic fatigue—are entirely involuntary and highly unpredictable. I was home tutored by a wonderful company and eventually - when I was well enough - we did day trips, sensory and rehabilitation tasks plus a lot more.
This photo is from the early days of FND when I was in hospital
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My message to educators and young people alike is one of radical hope: you are not limited by FND. A software crash is catastrophic, but systems can be rebooted. With unconditional belief from teachers and professionals, EHCP support, and the right support that extends beyond the classroom walls, young people with FND can find their way back to a full, meaningful life. We must ensure that no child experiencing a software crash is left behind in the dark.
This was my first trip in my new wheelchair to London after being housebound for years with FND A message of hope: unlimited by FND It took five years of intense, grueling rehabilitation to defy the medical odds and walk again. Today, I have travelled to over 120 towns and cities across the UK. I share my story now to raise awareness about the reality of FND and what it’s like to become disabled as a 13 year old. Hope is a spark that can survive the darkest days. It’s been a long hard battle with FND, painful and very isolating. FND took my legs and speech, and for a while my brain functioning caused me to become bedridden and trapped inside my own body. But from somewhere deep inside of me I found a sense of determination I didn’t know I had. I don’t remember the world as I used to know it but I now look at life differently.
This was one of the first times I stood up independently I know if I can get through severe FND, I can get through anything. I still have difficult days with FND but I’m now adjusting to life post severe FND and learning to live with my new normal. I’m pleased to say I’m recovered from severe FND but I have moderate FND now. At 13 I lost all my freedom to this life changing illness but I’m now more determined than ever to not let my disability hold me back from doing anything.
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