Ellie’s Story

FND

My name is Ellie, I’m 21 and started having unexplained seizures in 2023. In march 2024 I was diagnosed with functional neurological disorder. With my illness I suffer from limited mobility, full or partial body paralysis, memory loss and  vocal and bodily tics. Some days I am unable to walk properly and look like I’m on a jiggle board when trying to walk. When I received my diagnoses I lost my job and my driving license which were really important to me. When I got my diagnosis and still to this day, I get told I am faking it, it’s all in my head and have to explain to doctors and nurses what it is. Until recently this year I was in denial about my disorder as I couldn’t accept my life and body would never be the same. 0.05% to 0.2% of the population has FND so it felt extremely lonely. There isn’t a cure for FND, all you can do is learn to manage your symptoms and embrace your new normal. I don’t have much of a story to tell as I fell into really deep depression after my diagnosis and have only just come out the other side. I’m mainly emailing to help raise awareness and to be there for other people who feel the same way I do, who couldn’t come to terms with their new normal with their illness. I was lucky enough not to have to wait more than a year to be seen by the persistent physical symptoms service in County Durham England. If it wasn’t for this team, there kindness and patience’s I don’t know what I would have done.