My journey with FND through adolescence

In 2016 I went from being a healthy 13 year-old to one who couldn’t move or even speak. I’m now slowly starting to recover and learning to walk again. For years I saw no way out, trapped in a body that had stopped working. This is my story.

Before FND I was happy and healthy. My symptoms first started when I was 12 but then rapidly deteriorated to the point where I had all my abilities taken away from me.

My cognitive skills deteriorated then my physical health started to deteriorate. I became incontinent, needed support to walk and I didn’t know what was happening around me. My brain had shut down. My mind was just blank. I had to leave the school I was at as it wasn’t safe for me due to my sudden deterioration.

Unfortunately things then took a turn for the worse and I could no longer walk and talk. I woke up paralysed unable to talk or move. I was then rushed to hospital in an ambulance for testing where I then spent four months on a children’s neurological ward.

At first the doctors were baffled by my mystery illness. I struggle to remember the early days of my illness and my time in hospital but what I can remember is different faces and bright lights. 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.

After months of unanswered questions I was eventually diagnosed with Functional Neurological Disorder (FND). A few weeks after my diagnosis I was discharged as there was no cure and nothing more could be done, but my body was still getting worse.

Within a few weeks I lost my ability to sit up. My body couldn’t tolerate physio or sitting in an upright position. I was given a specialist wheelchair however this didn’t last long due to my deteriorating posture. Then my body deteriorated further and I was no longer able to tolerate sitting in any form of equipment. The only place I felt comfortable was on my hospital bed.

I then became bed bound. I was bedridden for three years. I was trapped inside my own body. It was like being awake inside a body that had stopped working. I couldn’t do anything for myself and needed 24-hour care, I was unable to move any part of my body. It felt like I was locked inside my mind and body.

I was unable to talk for a whole year then slowly with support, hope and determination my life began to change. I slowly started to learn how to talk again with support from speech and language therapy and other communication aids. At first, just a few words then after a year of being unable to communicate my voice slowly came back.

By this time my brain function had improved and I could understand what was being said to me and what was happening around me however I was still very poorly. I was also seen by a specialist team from Great Ormond Street.

Then after three long years my physical symptoms started to improve. I slowly learned how to move my arms, hands and my body didn’t feel so stiff anymore. Then eventually I learned how to sit up again with support, after this my body was now able to tolerate sitting in a wheelchair again. My first outing in three years was to collect my new wheelchair from the hospital, it was only the hospital but to me it felt like a whole new world ready to explore. It was amazing to be back in the outside world again.

Now, nine years on from my life-changing illness I’m still recovering and I’m learning to walk again! I’m now able to stand unaided which is something I thought I’d never be able to do.

Doctors aren’t sure if I’ll ever make a full recovery as the impact of having severe FND has left me with other problems. I was unable to walk for five years so just standing is a major accomplishment for me. It’s been a long hard battle with FND, painful and very isolating relearning how to do things my body used to take for granted.

Despite my FND I’ve never given up hope on achieving my dreams. There’s been times my FND symptoms haven’t been understood due to lack of understanding which is why raising awareness about the condition is so important.

My life changed forever when I was 13, FND took my voice and body away from me but I’m now more determined than ever to not let my FND hold me back from doing anything.