FND Awareness Day UK | 25th March 2023 | Emily’s Story

My names Emily, i’m a 15yr old female who was diagnosed with FND in September 2022.

I went from doing drama, dance, sports and more to using crutches and wheelchairs in less than a few weeks. In September 2021 I caught Covid, and less than a few weeks later I started blacking out and having seizures (non-epileptic seizures).

Over night my life completely changed and turned to what seems like my worst nightmare.

As weeks went by I wasn’t able to attend school anymore, go out with friends and I was terrified to go anywhere especially without my parents. I then gained more symptoms such as blindness, deafness, paralysis of different body parts. (Waist down, feet, arms, hands and more) , extreme fatigue, body aches, I’m often unable to regulate my body temperature. functional tics, and more. I was often getting hurt and injured. I missed lots of time off school causing my grades to drop and being behind in a lot meaning less options for my future. I always wanted to go into childcare as I love working with kids, and being told I wouldn’t be able to do this for safety reasons I was heartbroken. I was then told by lots of colleges they wouldn’t be able to take me on.

This is when i started to feel like FND was ruining my life. Not be able to get a job and not being able to do anywhere near as much as my friends could. As a 15 yr old I just wanted my old life back and to be able to do what all my friends were. At this point my mental health was getting bad and I was struggling to cope. I had no help from anyone other than my family who it also had a massive impact on. No Doctors wanted to help and kept telling me just to get on with life when I clearly couldn’t. I was in and out of hospital many times where I just had many Doctors tell me to stop faking. Told to just stop having seizures and to research FND then move on. And lots of other people with FND and Non Epileptic Seizures have said similar things to me.

So basically what I am trying to say is FND isn’t spoke about enough and very little people have heard about it, which shouldn’t be the case. FND and people with it should have more help and support. Its not fair and its something some of us may have to live with for the rest of our lives.

Written by Emily, Northamptonshire