Imagine waking up one morning as a healthy, active 13 year old, only to find your body completely refusing to cooperate within days. In 2016, that nightmare became my reality.
Part of our special series of articles on transitions
I went from a healthy schoolboy to eventually being entirely bedridden, unable to sit up, completely paralysed, and stripped of my ability to speak. For six months my mind switched off and I didn’t know who or what anything was. I don’t remember the early days of my illness and life before it is a blur.
I was eventually diagnosed with Functional Neurological Disorder (FND). I often describe FND to people as a massive brain “software crash.” If you run an MRI scan on my brain, the physical structure—the “hardware”—looks perfectly healthy. However, the problem lies in the digital signals. The brain’s operating system is completely unable to properly send or receive commands to the rest of the body. I felt like a literal prisoner, entirely locked inside a physical frame that had forgotten how to function.
The trauma of being dismissed
Because my hardware looked fine on routine scans, the medical system didn’t know what to do with me. I faced years of severe medical dismissal. I was told the symptoms were “all in my head” or that I was simply pretending. One GP said while I was completely paralysed that I needed to just “get moving”.
When a young person faces a sudden, catastrophic shift in their physical health, the psychological toll is immense. But when the professionals around you imply that your very real physical paralysis is a behavioral choice, the trauma deepens. For three years, I remained trapped in my bed, and for five years, I couldn’t walk. For a year I couldn’t speak a single word.
This is exactly where the educational system and medical system frequently pass the buck. FND sits on the complex border between neurology and psychology, so young people are routinely dropped through the cracks. School staff often lack the training to understand how a student can be fine one week and unable to write or speak the next. I attended both mainstream and, briefly, a special school, but both schools couldn’t handle my severe neurological shut down. The school environment post severe FND wasn’t suitable for me because of my ongoing physical and mental health challenges so as a result I wasn’t able to return to education after being bedbound with FND.
How an EHCP saved my future
My turning point didn’t come from a magical medical cure. It came from a dedicated, long-term rehabilitation pathway and a robust, highly structured Education, Health and Care Plan (EHCP) amongst other support.
My plan was built with an understanding that my neurological recovery and my educational access were completely intertwined. It allowed for a flexible, phased approach to learning that accommodated my severe symptoms and speech therapy milestones. It gave me the safety net I needed to slowly re-learn how to communicate, how to sit up, and eventually, how to start taking my first steps again. I was home tutored by a wonderful company and we did many fun activities together such as day trips when I was well enough, sensory and rehabilitation tasks, learning in a way I could cope with and lots more.
With that support, I didn’t just survive; I reclaimed my voice. Today, I am moving around, campaigning, and traveling back to London – a dream that felt completely impossible when I was staring at my bedroom ceiling for years. London is my favourite place and visiting the city is part of my rehabilitation.
I still have difficult days with my FND but I’m a lot better than I used to be. The reality of developing a disability as a teenager is a life changing experience. Going from someone who was non disabled to severely disabled is life altering and the emotional scars of this are still felt to this day in my body.
What Educational Psychologists can do
Educational Psychologists (EPs) hold an incredible amount of power in these situations. You are often the only professionals who can look at a student holistically, bridging the massive gap between their medical realities and their school environment.
My own experience with EPs was a positive one. I’ve been supported by a few over the years, including during the early days of FND while I was rapidly deteriorating at school, and was then supported again not long after I was discharged from hospital. They tried their best to support my needs but because of the severity of my FND there was nothing they could really do to improve my brain functioning. Even so, they were understanding and spoke directly to me even though I couldn’t respond back. They assessed my difficulties through observations, games and tasks. Even though I was unable to talk at the time they helped ensure my views and goals were heard in decisions about my education.
If you are working with a young person who has FND, or a similar invisible neurological condition, here is what I ask of you:
- Validate their reality: Never suggest their symptoms are a choice or a behavioral issue. The software crash is terrifyingly real.
- Fight for dynamic EHCPs: Ensure their support plans are flexible enough to adapt to a fluctuating condition. A student might need a wheelchair on Monday but manage to walk short distances on Thursday. Both realities coexist.
- Educate the wider school: Help teachers understand that cognitive fatigue in FND is a physical barrier, not a lack of motivation.
By understanding FND, you can stop young people from becoming invisible. You can be the reason a student doesn’t lose their education while they are busy fighting to rebuild their body. I was supported by a few Educational Psychologists over the years and always felt understood by them.
10 years on from my life changing illness I’m now more determined than ever to not let my FND hold me back from doing anything.
