For myself I, say I have Epilepsy, that I have a Disorder or my Condition
Thank you everyone for showing your thoughts and opinions on this question. It’s always been a curiosity of mine.
I have always said that I have Epilepsy, a disorder, or a condition. I have been coped over my Epilepsy since my early twenties. Epilepsy is my life and lifestyle. I stay positive for the majority of the time. My wife can’t figure out, how I can stay so positive on bad days. I tell her that I look back when I was having a good day. Whether that was in the same day or days before.
My number one rule I go by with my Epilepsy is , that I control my life , not Epilepsy.
Thanks again everyone.
Hi @A MyEpilepsyTeam Member , thanks for your comment. Your right everyones Epilesy is different. But on the other hand, we all have a similarity with each other. Im om of those who has Complex Parcial seizures, not aware of my seizures most of the time, no medication has controlled me totally and i have an average of 1 seizure a day ( there are others with harder struggles than I ) .
It is Sad that not many people know or understand Epilepsy. Epilepsy has been around for many hundreds and thousands of years. There are many diseases , disorders and diabilities out there that are understood better than Epilepsy and they haven’t been around that long. Its very frustrating with me.
In Canada we call it a disorder, the way I see it, my nervous system just lovesto play tricks on me! I do everything possible to keep myself healthy! Bythe way, mine came from nowhere too, my Doctor used to call them "farmers seizures" because they never start in one place! How old were you when you were diagnosed? My kids are 18 &23 , they have both given me a grandchild each, they are 2 and almost5!
When I was younger I tried everything I could think of to cure myself from this “disease, disorder” I ended up going to a blood specialist. He sat me down and kindly explained to me that I had epilepsy and that it was not going away. He told me of his clients ( patients) with HIV who lived good thriving lives... all I needed to do was separate myself from the disease/disorder. Instead of saying, “I am am epileptic” refer to myself as having “epilepsy “ that changed the world and perspective I had of myself and identity of the disease/ disorder. I still don’t know how or what to say in regards to calling it but it goes unchallenged once’s I start explaining what epilepsy is... I think most use the word, disorder of the brain cuz the neurons are not doing what they are supposed to unless the disorder was caused by a disease/ infection. Mine came out of nowhere.