BY AIMEE HIGSON-DIBB
My name is Aimee and I am 19 years old. I have a condition called Non-Epileptic Attack Disorder (NEAD) . I have been experiencing non-epileptic seizures for over 4 and a half years now but I was only diagnosed in 2016. Throughout my story I refer to my seizures as episodes.
February 2014 was the month my world turned upside down. Before this month I was a normal teenager in year 9 at high school. I played every sport at school, I did 15 hours+ cheerleading every week and was always super busy. Up until this point I only had a few minor health issues in my life and had never experienced any type of seizure or fainting episode.
The very first time I had an episode I was at my best friend at the time's house and it was one of the scariest experiences of my life. From what I have been told I kept passing out and was unconscious, unresponsive, and overheated. I had to be taken to hospital by ambulance and wait in A&E. After all my observations were normal a doctor came over and told me: "girls her age just faint sometimes, she's fine".
But of course I was not 'fine' and then the hurricane began.
These clusters of episodes where I would go in and out of consciousnesses while dissociating would happen roughly 10 days apart and they would happen anywhere: At cheerleading, in the middle of my lessons at school and at home. There was no pattern and no one could figure out what was wrong with me.
I saw at least a hundred doctors at multiple different hospitals who forced diagnoses upon me and many different medications which made me feel awful. A&E became like a second home to me as I spent so much time there and I was known by many of the paramedics who had taken me on at least one of my 14 ambulance trips in 18 months. I have sustained many injuries due to NEAD over the years that were usually head bumps and splits which meant more trips to the doctors and A&E. While I was still a mystery to the medical professionals I was transitioning from paediatrics to the adult population as I was almost 16. I had a few very traumatic experiences in adult departments before I was even an adult which resulted in a huge fear of doctors touching me.
Little 14 year old me had her life turned upside down but still had to carry on with her busy life and school work. Only now there was the added hospital visits, surprising episodes and dissociation spells popping up to make life even more difficult and stressful. I had to stop participating in sports at school and stop cheerleading too which was so hard for me as they were what I loved to do.
School was extremely tough at this point in my life, I was just starting year 10 and was an anxious mess. The fear of having an episode at any moment caused me so much distress that I didn't cope with school very well. I was forced to stay in 1 room for the majority of year 9 and 10 with no support from my school; I felt so isolated and alone. I was a gossip topic for everyone in my school as I was known as the girl who passes out all the time.
As you can imagine GCSEs were quite challenging for me as I missed a lot of my lessons due to having an episode or a panic attack or a hospital appointment. The lessons I did end up going to were spent dissociating or panicking. I was forced to drop ICT and Music because I had missed too much school and needed time to catch up on core subjects. I taught myself the majority of every subjects course content and wasn't predicted to pass any of my exams, which didn't fill me with a lot of hope. I can count on one hand the teachers that believed in me. Their plan was to get rid of me or repeat a year so I had a better chance of passing but I didn't want to spend any more time there than necessary.
During my final year of GCSEs I hit rock bottom. I was still a medical mystery and all the traumatic medical experiences I had undergone with no findings made me lose all hope of ever getting a diagnosis or becoming normal again. There was so much loneliness surrounding me, as I believed no one understood what I was going through, that no one could help me, and that I was a huge burden on my friends and family. Therefore I felt scared, confused, and wanted to disappear. I attempted to take my own life in 2016. People usually ask me: "do you regret it?" and the answer is no. It showed me that no matter how much pain I had or how much suffering I had gone through, I could survive because I had survived an attempt on my own life.
I am finally at a point in my life where I can sit here and write: thankfully I did not succeed.
Even with my medical issues I now dealt with panic attacks every day and I started to self harm as it was the only way I thought I could be in any control of my life. It was not easy to cope with everything all at once while completing your exams. I saw a therapist who I believe saved me from a pit I never knew I could climb out of. She helped me through my GCSEs and I managed to pass all of them! I gained 9 qualifications and I am so proud of myself for overcoming the many barriers to my learning.
My NEAD diagnosis was determined in summer 2016 by a week of video telemetry. This is where they hook you up to an EEG and ECG machine and monitor the recordings while you have an episode, to reveal the cause. The results from the recordings found that my seizures were in fact NEAD episodes. Luckily this meant no more horrible medical procedures and medications. I could finally get some help! There is no medication that you can take to stop NEAD but there is therapy treatment with any therapists or clinical psychologists who specialise in NEAD.
I have been seeing my clinical psychologist for over 2 years now and he has honestly saved my life. I know I wouldn't be here today without all he has done for me. Having someone who understood my condition and helped me understand why I was feeling the way I did was life changing for me. I truly thought I was going to be a medical mystery forever.
It took a while for there to be any drastic improvements to my NEAD but I have gone from having multiple episodes a day to 1 a week. This is huge for me as I spent so long just waiting for the next episode to happen. Of course I still have bad weeks if there is a lot going on where I will have multiple episodes or a bad injury from when I fall. Even though the episodes suck when they happen the difference now is I feel more in control and am better equip with strategies and coping mechanisms. Now, they aren't nearly as horrible as they were years ago.
I started college in September 2016 and took Music, ICT, and combined English as these were my favourite subjects. When I began I was so scared of what students and teachers would think of me because of the awful experience I had at high school. I was terrified and ashamed to tell people about my condition as I just wanted to be a normal teenager. However, I was very excited for the fresh start away from high school, studying the subjects I love.
There were certain challenges I faced in college as NEAD is not a well-known condition and the nature of my episodes can be quite frightening to someone who has never witnessed one before. Also, there isn't really anything anyone can do to help once I've had an episode, only to sit with me and wait till I feel ok to carry on with my day. I missed a lot of my lessons due to NEAD but I always caught up as I was so worried about getting behind with my work. There were some amazing LSAs at college that helped me take notes and record lessons for me if I was unable to attend.
I finished college this summer with 2 D* and a C which I am ecstatic about! I was so surprised I passed English as I had an episode before my exam and hit the left side of my face on my sink at home. My eye was swollen shut and I was in a lot of pain right before I needed to complete my A level. During my exam I had another 4 episodes but I kept pushing through and managed to pass, which is amazing considering all that happened.
As I started to type out this next part of my story I realised how strange it felt. I honestly believed I wouldn't make it to 18. Adulthood. I had never really fantasised or dreamt about being an adult as I thought I wouldn't be alive to experience it. It's quite overwhelming, in a good way as now I know I have my whole life ahead of me, but at 15 I really believed my life would've been over already.
So when you are reading this I will be starting University to study Primary Education. I love teaching and believe it is so important for young children to receive meaningful education and to know that someone is looking out for them in school if no one is at home. I know that as I start this new chapter in my life there will be new challenges to face and that it won't be easy. But I have gone through so much and achieved amazing things in spite of everything life has thrown at me. So I know I am ready for the challenge as my story as an adult is just beginning.
I am resilient and I will succeed.