Jemima raising awareness of Functional Neurological Disorder

FND Awareness Day UK took place on the 25th March and 19 year old Jemima got involved with raising awareness, by sharing her story and being interviewed on a local run radio station.

My FND story is a long and complicated one. It causes a whole host of symptoms as well as causing Non-Epileptic Attacks Disorder (NEAD), Chronic Fatigue (ME/CFS), and Dystonia.

When I was 15, I developed intense pains in my knees whilst on a summer camp in August 2012. We did a lot of outdoor activities, so I put it down to not being used to that level of exercise and expected it to subside when I got home. However, the pain soon progressed to being constant and began to spread to my other joints so my Mum took me to see a GP. The GP diagnosed me as having growing pains so we decided to go back a week later. Within that week, the pain and muscle weakness became so extreme that I couldn’t walk at all. The GP immediately referred me to a pediatrician, who told me he was 99% sure that I had juvenile rheumatoid arthritis. Within 2 months of the pain developing, I had become completely immobile and needed help with basic daily care.

When I saw the arthritis specialist after undergoing a series of scan and tests, he said I didn’t have arthritis. Instead, I had ‘Chronic Idiopathic Muscular Skeletal Pain Syndrome’, which I have since found out was a load of words he put together that explained my symptoms – not a diagnosis. He put me on 9 lots of medication and referred me to a Pain Clinic. The Pain Clinic consultant told me that there wasn’t anything wrong with me, my pain wasn’t real, and that “we know you are exaggerating, so you should stop making it up.” We ended that appointment very quickly, and decided to take matters into our own hands. We went back to the GP and demanded to have every test going, be referred to a neurologist, and taken off medication which wasn’t necessary.

After 2 and half years of numerous scans and hospital appointments, we eventually saw a locum neurologist by chance. The first thing he said to me was “I’ve read your notes and I know exactly what it is. It’s called Functional Neurological Disorder. I believe you.” Needless to say I was very emotional after that appointment! Finally everything made sense. After that, I was referred back and forth for a while as my symptoms kept progressing so it was difficult for the FND consultants in London to decide on the best course of action, but eventually treatment began and my FND became more manageable.

I have had FND for 4 and a half years. For the first half of that I spent all my time arguing that I was telling the truth, and having to persuade professionals to help me.

Thankfully, with the help of FND Action, these attitudes towards FND are slowly starting to change. I read a quote somewhere once that said “you can’t see air, but you accept it exists without question.” and that sums up FND for me. We have to keep positive, and keeping fighting for proper understanding and treatment for FND.

I now have a consultant in London who I see every 6 months, and I have Neurological Physiotherapist who I saw in January 2017 and am going to be seeing again in May. I am in regular contact with her so I can ask her for advice in managing my FND. I am vice-captain of my local Wheelchair Rugby League club Keighley Cougars Wheelchair Rugby League, I am an advocate for disabled rights, and I am slowly building a career as an Equine Behaviorist.

Thank you to Sam Stebbings for converting the audio recording into a video for us to share.

To read more about what took place on and around FND Awareness Day, visit FND Awareness Day UK – 25th March 2017