I have been diagnosed with epilepsy since I was 9 years old and that has been 17 years ago now. Growing up it didn’t take me long to realize that something that was harming my body each and everyday was often referred to as a joke to many people. Whether that was because people didn’t understand it, didn’t care or never heard of it, it was frustrating and hurtful. So as someone who lives with the seizures as well as their side effects each and everyday of her life, here are my reasons Epilepsy needs to be talked about more often.
1) 1 in 26 people suffer from epilepsy
Epilepsy affects every 1 in 26 people from all around the world. 1 in 26! That’s quite a few people there. So your seizure joke may be funny to you because you don’t have it but you could also be hurting someone close to you that you had no idea had seizures.
2) Lack of understanding
While there are so many people with Epilepsy around the world, often a person with Epilepsy doesn’t know anyone else where they live. It can be a very lonely and scary illness. Epileptics often lose friendships over their illness because of people’s lack of understanding.
3) Anyone can get a seizure
Anyone of any age, any race, male or female can have a seizure. A person who is perfectly healthy can have a seizure and develop Epilepsy. And even a person without Epilepsy can have at least 1 seizure in their life.
4) Many different types
There’s no one kind of seizure and there’s no one size fits all kind of epilepsy. The kind of seizures you see on TV are Grand-Mal seizures and many of us don’t have that kind! There are many different types of seizure as well many different types of Epilepsy. You can actually have more than one type of seizure.
5) You do not always have to go to the hospital
A person does not always need to go to the hospital after a seizure! Most of the time when you call 911 we are thankful you care but annoyed at the waste of our time. Unless the seizure last longer than 5 minutes, we having back to back seizures with no rest time in between or we aren’t physically hurt there’s nothing emergency responders can do for us!
6) Epilepsy often starts at young age
Epilepsy often starts at a young age for many of us. Because our peers and teachers more often than not don’t have any idea how to help us during a seizure or even know what it is, our parents often have to fight the schools to get the help we need during school. Whether that help is with school work or having a safe place for us if we should have a seizure, among many other is just more reason it should be taught about in schools. So when a school comes across a child with Epilepsy, the teachers, staff and students don’t treat it like it’s foreign topic.
7) No known reason for seizure
Most of the time there is no known reason for our seizures. If you ask us why we have seizures often the answer will be “I have no clue.” And it’s not like we didn’t try to figure that out ourselves either! Other times our seizures are due to a birth defect, genetics, to many hits to the head or brought on by another illness. You’ll never get the same answer from two Epileptics.
Epilepsy can limit us from doing many things our healthy peers can do. Often because of our seizures we cannot drive a car, riding a bike can be impossible and even taking the bus alone can be unsafe. Many of us don’t feel safe showering alone and many have to wear helmets to protect their head when they fall. That is because we never know when or where a seizure will hit us especially if we don’t have an aura (a feeling, taste, smell, sensation epileptics can get before a seizure), which many of us don’t.
9) Possible brain damage
Every seizure we have damages our brain in some way. The longer we don’t have our seizures under control the longer damage is being done to our bodies. And that damage affects every part of our body not just to our brains. Thanks to our seizures we can bite our tongues, wake up with bruises, cuts and scrapes from falling or hitting something during a seizure.
It’s more serious than most people think. It can sometimes be deadly. SUDEP, sudden unexpected death of someone with Epilepsy who was otherwise healthy. Each year, more than 1 out of 1,000 people with epilepsy die from SUDEP. If seizures are uncontrolled the risk of SUDEP increases to more than 1 out of 150. How scary is that? Someone you love with seizures could possible die if they don’t get the help they need.
Many things can trigger our seizures. Such as lack of sleep, a fever, flashing lights, stress, low blood sugar, certain foods or medicines and even a woman’s period. So if we say we need a nap or can’t eat your moms food or can’t go to your concert it’s not because we want to hurt you and don’t want to. But the more we can prevent our seizures the more we’ll be able to do other things with you.
Despite all the challenges Epilepsy can give us and even though we look like perfectly healthy people on the outside it still hurts when people don’t acknowledge the fact that we are sick. We don’t want you to treat us differently because truth is we can do almost everything people without Epilepsy can do. But sometimes we won’t be able to things with you and when that happens all we ask for is understanding that we’ll try to be there next time so please don’t stop asking us. We don’t expect you to fully understand though. We don’t expect you to even try to but if we can have you there to vent about our problems it helps us through the bad days. Even if you don’t relate in any way it helps us feel not so alone. But most of all we want you to make an effort to learn about our illness. To learn how to help us during a seizure, what the signs are before a seizure starts, and as much information about Epilepsy that you can. So that way you are not only helping us but maybe someone else you might come across having a seizure. If you do that you are showing us how much you care about us and you are one less person who doesn’t understand our illness.