There are so many things others aren’t aware of when it comes to what epilepsy is and how it can be different in every person. Chances are some one has sat across from you after you tell them about your epilepsy or seizure disorder and done this:
Saying something along the lines of “Oh you have fits right?” WRONG. This is a “fit”:
And then come the endless Pokemon jokes. I’ve made them myself.
I’ve come to understand that people make fun of it or don’t care because they think that A: epilepsy isn’t a big deal because all you have to do is “take meds and you’re fine”. B: you’ll be fine as long as you’re not around flashing lights (because that is the only trigger people can think of thanks to TV) or C: they think that because it’s common and not cancer it’s ok.
For me, there was no found cause behind why I have epilepsy which makes it harder to explain other than saying it’s genetic. But all of the testing you go through when you’re on that long painful road to be diagnosed has probably brought up some questions by your friends and family. Like: “So if you just have epilepsy why did they have to poke you with a bunch of needles? (EMG).” And all you want to do is scream at their stupid faces. Because at this point the battery of testing you’ve been going through has literally deprived you of sleep and any fun. But, it’s ok, they just don’t know any better. And you have the chance to change that now. Most people don’t care about other illnesses until it affects them or someone they know, or is cancer.
I was personally tested for everything from encephalitis to Parkinson’s because of how quickly I developed it. And it took months and months for the doctor to safely conclude that there was nothing else causing what was happening to me, including cancer. And it put me and especially my family through hell.
So, if you want to stop this scenario from happening you may have to be more thorough in your explanations. Not to the point of being that person that posts a bunch to social media, just a brief rundown of your type of epilepsy can be enough. Or you can just scream at them and walk out. I won’t judge, some people don’t deserve the time and there are such things as stupid questions. Hell, you could tell them it makes you morph into a power ranger and they would probably just leave you alone if you want.
Things to include in your explanation to help them understand and possibly do their own research:
- Whether or not you have tonic-clonic seizures and that not everybody has them. (Get this one out-of-the-way first, it makes them more attentive)
- Tell them what type of seizures you have. (This makes people more curious because they probably didn’t know there were types, let alone over 40)
- Explain what the words on your emergency ID bracelet and/or phone app mean. Including who to call and what to do. Like where your emergency meds are located.
- Tell them about your triggers. And make sure they understand whether or not you are photosensitive. And that photosensitivity is actually pretty rare.
- If you have a VNS (vagus nerve stimulator) show them where the magnet is and how to use it.
Here is how I explain what I have to someone new or who don’t know:
I have left temporal lobe epilepsy and my primary seizures are absence, not tonic-clonic (grand-mal). I also have myoclonic jerking and as a result, you may see my head and arms jerk suddenly, I am fine and remain conscious throughout. If something happens and I get injured and can’t communicate I wear this bracelet ( I point to it) and more details are in my emergency app on my iPhone. I have emergency meds in here (I point again). I am photosensitive in extreme cases only, like concerts and prolonged exposure to a certain frequency of light. If I stop talking and you see me staring for a bit it’s ok and there is nothing you can do (aside from making sure I’m not in a dangerous spot for some reason) I will come out of it. I may ask you to repeat what you said. And I may be nauseous and disoriented for a bit, again don’t worry.
I usually don’t explain my essential tremor unless I’m having a bad day and have to explain why I can’t get the water bottle to my mouth. It’s kind of like the flight attendants before take off.
You’ll get used to it, and it will help you in the long run. Here are some facts that can help them further understand if you wind up having a long conversation and they have questions for you.
Epilepsy.com has some great stuff and here are just a few:
- 1 IN 26 people in the United States will develop epilepsy at some point in their lifetime.
- 6 OUT OF 10: Number of people with epilepsy where the cause is unknown.
- ONE-THIRD: Number of people with epilepsy who live with uncontrollable seizures because no available treatment works for them.
- You can’t swallow your tongue during a seizure. It’s physically impossible!
- Epilepsy can’t be cured. It is a chronic medical problem. For many people, medicines work to treat their epilepsy, but treatment doesn’t work for everyone.
- You can die from epilepsy. The most common cause of death is SUDEP (sudden unexpected death in epilepsy). While there is a lot we still don’t know about SUDEP, about 1 in 1,000 people with epilepsy die from SUDEP each year.
- Each person’s seizures are different.
Because of the lack of education and publicity epilepsy gets aside from Lil Wayne and that guy from Lost, not many people care. After all, it’s not cancer, you’re not dying(at the moment), and there are medications. Seven different medications have failed me, and the one I am on now only controls what I have. It does not and never will cure it.
Going through all that testing will leave you emotionally raw. After all, you may have waited two weeks to find out if there is some rare disease slowly killing you. Nothing can prepare you for that, and can nothing seriously speed that test up?
The only relief felt is knowing that there is a name for what you have. After that, it’s a fight to control it and you’re going to spend a lot of your time explaining it to other people. No one can truly understand it unless they are in your shoes.
When all else fails, just tell them to go to epilepsy.com.