Posted in Blog

Epilepsy for Dummies

As you know, I have Epilepsy.

a neurological disorder marked by sudden recurrent episodes of sensory disturbance, loss of consciousness, or convulsions, no associated with abnormal electrical activity in the brain.

I get loads of dumbass comments from people about my illness, surprisingly from people who know me. They don’t often ask much about my condition… this included my family who although saw my seizures, paid no mind to the causes or education behind it like I did. And it’s the same with friends and employers.

Epilepsy affects 600,000 in the UK, which means that 1 in 100 people in the UK have epilepsy and yet people are still so ignorant about it.

Speaking to people with epilepsy, we’ve been sharing stories on the ridiculous things people have said to us about our seizures and about our Epilepsy – these are some of the highlights:

Spotlight

  1. Stop getting stressed (because apparently stress and anxiety has a switch right? And life is that simple right?)
  2. Calm down (my brain is cooking up a thunderstorm I have no control over – you try telling it to calm down mate)
  3. Stop thinking about the seizure and it will go away
  4. Tell your body to stop doing it (having seizures)
  5. Lie on a cold floor while you have a seizure and it will stop
  6. Pray harder and God will heal you
  7. You don’t look sick
  8. You don’t look like you have Epilepsy (WHAT DOES THAT EVEN MEAN???!!!!!!)
  9. Have taken my medication? (as if it’s my fault that I’m having a seizure).

Stressed

THERE IS NO CURE FOR EPILEPSY, ONLY TREATMENT TO TRY TO CONTROL THE SYMPTOMS.

I’ve also been told by my employer that I should get a different job and that I shouldn’t work at all because of my disability.

 

I recently came across this quote that really resonated with me and I  hope that anybody reading this, does take the time to really listen to the words:

‘You can make a big difference in the lives of those with chronic illness by learning more about their symptoms and approaching them with compassion and support. Gaining an understanding of chronic illness will help make these conditions less “invisible.”’

Quite frankly, I’m sick and tired of being responsible for educating the people in my life about my illness, especially when I am not met with compassion or support.

I am taking three different types of AEDs (anti epileptic drugs), plus vitamins to counteract the side effects. I suffer from constant brain fog, exhaustion and migraines as well as the seizures.

All of this is invisible.

Travelling to work everyday makes me incredibly anxious and exhausted. On top of that I am expected to socialise which is why my friendship circles are quickly dwindling because I can no longer keep up. My leg muscles are STILL aching from the grand mal seizure I had a week ago, so I can’t just “hop onto the tube” and travel across London like I used to be able to anymore. The brain fog also makes it too slow for me to keep up with your conversations so I miss a lot of what everybody is saying.

All we ask is that you remember us and furthermore, if you really do care about us you would help us to make this invisible demon a more visible one.

Just because you cannot see our pain, does not mean that it doesn’t exist.

For those of you who are reading who have people in your lives with epilepsy, if you haven’t yet, please do take the time to research about this condition:

Epilepsy Society – what is epilepsy?

Epilepsy Action

Epilepsy Foundation

NHS UK

Don’t be a dummy.

 

 

 

 

Author:

I’m Cece Alexandra and I have Epilepsy. Since being diagnosed, my life has changed significantly. After studying and teaching Humanities and Literature for all of my adult life, I was bullied and lost my job a month before qualifying to become an English Teacher. Once you fail the Teacher Training course in England, you cannot ever retrain; I then became too sick to work because of my Epilepsy. I am now currently studying an MSc in Mental Health Psychology with the University of Liverpool. My disability provokes me into raising awareness for invisible disabilities, which I also actively partake in with Epilepsy Action. Part of that awareness is to help fight against invisible disability discrimination - I believe that this behaviour is not cognitively unconscious; modern society is actively partaking in a hierarchy of disabilities and I believe that there is not enough psychological research to prove this. I am also clinically interested in Cultural Psychology - particularly Collectivist Culture, and wish to pursue this further in my academic career.

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