Liam is 22. He’s been fighting Functional Neurological Disorder for almost ten years.
Before FND I was happy and healthy. My symptoms first started when I was 12. My cognitive skills deteriorated and I had coordination difficulties. Within a few months things rapidly deteriorated. I became incontinent and needed support to walk. I started chewing objects and I didn’t know what was happening around me. My mind was just blank. I had to leave school as it wasn’t safe for me. Within a few days I couldn’t walk or talk. I was rushed to hospital where I spent four months on a children’s neurological ward. At first, the doctors were baffled. They filmed my case for medical research for universities around the world. I had so many scans, tests and medical procedures, but everything came back normal. I struggle to remember my time in hospital, but I can remember faces and bright lights. Eventually I was diagnosed with FND.I was discharged from hospital, but my condition was still deteriorating and I couldn’t sit up. For a few months I attended a special school, but they didn’t know how to support me or look after me. I returned to the special school on a special stretcher for a few weeks but had to leave as my body couldn’t tolerate the stretcher.
Three years trapped in my own body
My body deteriorated further, and I couldn’t tolerate sitting in any form of equipment apart from my hospital bed. My body used to lean forwards with my head on my knees. I couldn’t tolerate sitting in an upright position, but my head on my knees was my comfortable position. No wheelchair was suitable, and my body couldn’t tolerate physio. I was bedridden, trapped inside my own body. It was like being awake in a body that had stopped working. I couldn’t do anything for myself and I needed 24-hour care.
Then things began to change
For a year I couldn’t talk. Then I slowly began to learn how to talk again. By this time my brain function had improved. At first I could only say a few words, and speech and language therapy was helpng me. Eventually my voice returned fully and I could speak to everyone again. I was seen by a specialist team from Great Ormond Street. When I was poorly, I formed a special bond with two things: London and the ITV show Loose Women. It was my dream to visit London and to meet the Loose Women, but due to my FND I wasn’t well enough to go. CAMHS helped to motivate me. They made me themed progress charts, maps and timelines of London and Loose Women..
Tasting freedom
After three long years my symptoms started to improve, my body didn’t feel so stiff any more and I slowly learned how to sit up again. The outing to collect my wheelchair was my first outing in years and it felt amazing to be back in the outside world again after being housebound .It was only within the hospital but to me it felt like there was a whole new world for me to explore. Finally, I was well enough to visit London. To actually be in London is a dream come true. The Loose Women heard about my story and they sent me a video message. Then a few months later I met some of them. I’ve now met fifteen Loose Women.
Life now
Nine years on, I’m slowly starting to recover, and I’m learning to walk again. I still have difficult days with my illness, and doctors aren’t sure if I’ll ever fully recover. The impact of FND has left me with difficult feelings and emotions. As I recover I’m determined to do more of what I love, including visiting London. I recently achieved one of my goals and visited more than a hundred towns and cities across the UK. My next goal is to go abroad. One day I hope to live in my special place—London, and I want to raise awareness about FND. Despite my FND, I’ve never given up hope on achieving my dreams. I’ve been determined not to let my illness hold me back from doing anything. FND took my voice and body away from me, but I’m now more determined than ever to not let it hold me back.
IG @liamloveslondon