Even in pain, there are blessings to be seen, we just have to be willing to see what they are. What hurts you, also blesses you. Darkness is your candle. You have to remember that through everything, no matter how dark and tough, through it all, there is light.
Any diagnosis can be a shock, even if you are expecting it. Do you feel numb, angry, confused or frightened? Or maybe you feel relieved – everything makes sense to you now. I guess you could say everyone has their own way of reacting to a new situation.
Hit of reality
Like a lot of people, I was young when things started to seem unusual, and young when I got the diagnosis of
Epilepsy. I was 10 at the time, nothing really mattered. All that mattered to me at 10 years old was keeping my Tamagotchi alive and playing outside with my little brother. But as the years went by, stronger feelings hit me.
There was fear, distress, all these emotions that I had no control over. I felt lost, this condition has taken a sense
of independence from me, and I could do nothing about it. “Why me?” I asked, “Will I have this forever?” but the
truth is, nobody could answer, there was no answer.
A diagnosis of Epilepsy, PNES, or any other seizure related condition can be hard to accept. It may change some
things in your life but you need to remember it’s not necessarily forever. Losing your driving licence and taking
medication are two of the big issues, but it’s not always permanent. It does take a long time to adjust, but like
I said in my previous column, we’re better off not driving because not only are we keeping us safe, but we’re
keeping other people safe too. It may help to remind yourself that you are still the same person you were before
the diagnosis and that support is available if you want it.
Changes in life
One of the biggest issues I had to face 5 years after diagnosis was neuropsychiatric disturbances. I was put on
Ethosuximide, and it caused severe emotional problems for me, and I was soon diagnosed with anorexia. My
whole life changed, my whole attitude towards life changed. I pushed everyone away and became this recluse. I
didn’t really have many friends anymore, and school didn’t care. Nothing seemed the same, Mum asked me what
was wrong but nothing seemed right anymore. I walked around my room like a zombie, I couldn’t think straight
and I was drained of any source of energy I had left. It was a real knockdown for me because being in this state of
mind was almost impossible to pick myself back up from, I dropped out of school for a while, and all I ever wanted
to do was sleep. I became a nobody.
From there came severe anxiety; anywhere I went I just had this constant panic that I would have a seizure at any
moment. Everywhere I went I seemed to see food, people eating, people making food, it was on TV all the time,
in books, in songs, in magazines. I jumped all the time, I was always on edge, feeling sick, I was constantly irritable
and I could never sleep. I imagined these scenarios in my head that were way worse than reality. My life was
controlled by my mind and it seemed like this was my life, and I was never going to find peace other than in this
Light in the darkness
It’s not easy, but I don’t think anybody ever said it was going to be. I’m still undergoing tests and hospital
appointments to find more answers because this is one big puzzle. I’m only 19 but I’ve learned a lot, and I’ve learned
that I am going to be the change that I wish to see in the world.
25 yr old monthly columnist on Living Well with Epilepsy. Full time worker of NHS England.
Emily’s Perspective is a snapshot of what life is like living with Epilepsy. I was diagnosed with Epilepsy at the age of 10.
Based in UK.