My journey with severe FND since childhood

My journey with FND began in 2016 when I was 13 years old. I experienced physical and cognitive deterioration. It got to the stage where I had all my abilities taken away from me. I had to leave school as it wasn’t safe for me because of my sudden deterioration. I went from being a healthy teenager to one who couldn’t move or even speak. I was rushed to hospital for testing and spent months on a children’s neurologist ward. The doctors were baffled by my case and filmed me for medical research for universities around the world. I was very poorly as my brain and body completely shut down on me. I was eventually diagnosed with severe Functional Neurological Disorder also known as FND.
I was left suddenly and severely disabled, having all my abilities taken away from me. I don’t remember the early days of FND and life before it is a blur. FND also caused me to lose the ability to sit up and eventually I became bedridden as a result of my condition as I couldn’t tolerate sitting in any form of equipment. No wheelchair was suitable and I was housebound. I felt trapped inside my own body.

FND has had a life changing impact on my life. The emotional scars of becoming disabled as a 13 year old are still felt to this day. It’s been a long hard battle with FND, painful and very isolating. I sometimes don’t feel understood because of my FND. To this day I’m still recovering from the life altering impact FND had on my life as it still causes me ongoing physical and mental health challenges. There’s been times my symptoms have been misunderstood due to lack of understanding surrounding the condition. But one thing FND could never take away from me is my determination. I’ve been determined to not let my FND hold me back. After three years my physical health started to improve and I was then able to go back outside again after years housebound. My rehabilitation and recovery from severe FND has had many setbacks over the years. I’m now learning to walk again and adjusting to life post severe FND plus learning to live with the condition that left me disabled when I was 13. I’m now pushing to raise awareness about the realities of FND.

I found goal setting really helpful. I had progress charts to help motivate me achieve my dream such as it was my wish to visit London. My different support teams made me London themed progress charts, maps and timelines to help motivate me. Eventually when I was well enough to sit in a wheelchair I’m pleased to say I made it to London and have been back many times since to my favourite place. Over the years I’ve got through many types of wheelchairs, posture chairs, toilet chairs and various other types of equipment. I’ve been supported by neurologists, paediatricians, psychologists, psychiatrists, physios, OTs and other professionals. My parents were my full time carers as I required 24hr care during those most difficult times.