In 2016 my entire world shrunk overnight. I went from a healthy, active thirteen-year-old to being completely unable to walk or speak within a matter of days. My body basically went into a total shutdown, and I ended up spending years bedbound, paralysed and unable to do anything for myself. It felt like one day I was running around playing outside and the next, I was trapped inside a shell that refused to cooperate.
When you lose everything that quickly, your concept of progress changes entirely. You quickly realise that survival, adaptation, and pacing don’t happen in massive leaps and bounds; they happen in millimetres.
Eventually, after a lot of confusion and months spent in hospital, I was diagnosed with severe Functional Neurological Disorder (FND). The easiest way I describe it to people is by using a computer metaphor: my physical hardware (the brain structure itself) looks totally normal on an MRI scan. But the software (the signals sending messages between my brain and my body) is completely glitching. Because my scans came back clear, the healthcare system simply didn’t know what to do with me. Instead of getting immediate, specialised neuro-rehabilitation, I faced a institutional wall of incomprehension. I had professionals look me and suggest that my physical symptoms were “all in my mind,” or that my inability to walk and talk was some sort of subconscious behavioural choice.
When the medical system cannot physically see your illness on a screen, they try to rush you through a broken pipeline; they want you cured quickly, or they want you gone. But FND doesn’t care about clinical timelines.
The illusion of the giant leap
The media and charity campaigns love an easy recovery story. They want the dramatic moment where someone stands up out of a wheelchair, smiles for the cameras, and is suddenly and perfectly cured. They want the giant leap because it makes for comfortable viewing. But living with a severe, fluctuating neurological condition means completely rejecting that narrative.
Now, at twenty-three years old, my life is measured in those quiet, invisible millimetres. It is the tiny painstaking shift of a muscle group relearning how to move again. It is the agonising effort of trying to form a single sound when your jaw is locked. It is also the mental discipline of choosing to stop and rest today so that my nervous system doesn’t crash completely tomorrow. Some days I can manage a trip outside, and other days my nervous system forces me to stay entirely still.
The difficulties of navigating the medical model – and dealing with things like Personal Independence Payment (PIP) assessments or sceptical consultants – are rooted in the reality that the system is built entirely for checkboxes, not people. It demands a predictable trajectory. It doesn’t understand, or care to understand, a disability that moves forward three millimetres on Monday, and drops back two millimetres on Tuesday. Because my condition fluctuates, the system could see my illness as illegitimate or suspicious. But a changing, unpredictable disability is still a disability, and it requires support on the bad days just as much as the good ones.
The violence of psychologising physical pain and mental health impact
The most damaging part of the current medical framework is how quickly it defaults to psychologising physical suffering when clinical tools fail. If an MRI can’t map the damage, the system assumes the problem lies in the patient’s mind or attitude. This isn’t just a lack of education; it is a structural failure that leaves thousands of people with FND and other invisible illnesses completely abandoned.
I spent a year in total silence, unable to speak a word, while professionals debated whether I was just refusing to talk. Being discharged from a hospital ward with a wheelchair but absolutely no long-term treatment plan or rehabilitation roadmap is a form of medical neglect. It isolates you practically and structurally. It forces you to spend your limited energy fighting the very people who are supposed to be treating you, just to prove that your body is genuinely failing you.
The mental health impact of becoming disabled at thirteen is life changing. The emotional scars are still felt to this day. For years I was a teen who was locked inside a body that had simply shut down and with it, my feelings. Eventually when I was well enough and able to start moving again, they came flooding out. I experienced overwhelming difficult feelings and emotions, and still do.
Valuing the smallest movements
Real change won’t happen by waiting around for the medical establishment to magically catch up, update their textbooks, or develop empathy. It happens when disabled, neurodivergent, and chronically ill people collectively refuse to dilute their realities to make institutions feel comfortable. We need to completely shift the conversation away from the heavy, toxic pressure of clinical recovery and toward actual, structural support for the lives we are living right now.
We don’t need more toxic positivity or self-help tips telling us to think ourselves better. We need an NHS and a social care framework that values our pacing, listens to lived experience, and stops trying to police our timelines. FND cannot continue to be treated as a medical afterthought or a psychological scapegoat just because our progress doesn’t look like a straight line on a doctor’s chart.
To anyone dealing with a system that refuses to see or believe you because you aren’t hitting their metric of a perfect recovery: your pace is valid. Moving in millimetres is still moving. You do not have to quiet your voice, hide your bad days, or force your body into their rigid boxes just to justify your existence and your right to care.
FND took everything from me: my voice, independence and freedom, but I am a mental health survivor and severe disability survivor. I survived a life altering experience and I’m the one telling my own story.
About the author
I am Liam Virgo, a 23 year old disability advocate and lived experience expert. I am a mental health/severe disability survivor. At age 13 my life completely changed when a sudden onset of severe Functional Neurological Disorder (FND) left me bedridden, paralysed and unable to speak. After a 10 year long battle emotionally and physically to reclaim my voice and independence I’m now pushing to raise awareness about the illness that changed my life. I share my journey on Instagram.