November is known to those dealing with Epilepsy as Epilepsy Awareness Month. On this second day of awareness month I want to take a moment to look at and make you aware of some aspects of epilepsy that you might not be aware of. Such as ways those with condition are, and have been looked at over the years. As well as some of the unique challenges they have and continue to face that those with other chronic or invisible illnesses do not face. I also want to share a little bit about how I cope.
Epilepsy is a condition that can manifest in many different ways and can affect anyone regardless of age, gender, or class. Look at it this way, if you have a brain you can have epilepsy. Roughly 3.4 million Americans have epilepsy and 1 in 10 people in the United States will have at least one seizure in their lifetime. Let’s clear something up in case you are confused. I said epilepsy, then seizure; epilepsy is the recurrence of seizures whereas people can have a single episode of a seizure such as a febrile seizure.
In 2019 people with Epilepsy continue to suffer with more social stigmas and bullying than people with other “invisible illnesses” like MS or Lupus because people don’t understand. Still, in 2019, those with Epilepsy are considered by some to be afflicted by satanic possession in some places. People are afraid of the physical manifestations when a grand mal seizure presents, some have been deemed “non compliant” by police and beaten or tased, and the general lack of knowledge has been a barrier for those in the community to overcome.
Living with epilepsy is not easy. There are a number of challenges that you live with on a daily basis. I do not expect “outsiders” to understand everything or even that much about my disease. However, when given the opportunity such as this, there are three things that I like to tell people about epilepsy.
First, epilepsy is NOT Leprosy. So what if my brain has a little strange wiring now. It works differently than yours. I get a laser light show, you don’t. I have to do things differently, you don’t. Don’t run away from me and stay away from me because you fear my brain. I did not choose the epilepsy life. It chose me. I may make adaptations, not by choice, but I still want to live life. If you can’t handle that, then please leave my life. But also, have the courage to tell me that.
Second, there is something called SUDEP. Sudden Unexpected Death in Epilepsy which is not caused by an injury when having a seizure. It is the actual death caused by a seizure itself. Seizures cause disturbances in oxygen levels, heart rates, breathing, and a combination of these can result in death. There are other factors that are simply not known. In the US, approximately 50,000 die annually from SUDEP.
Third, I make some really crazy jokes about epilepsy and the inabilities or strange ways I do things simply because laughter is a way to cope. It is okay to laugh. I get you may feel awkward sometimes around me, but guess what, I do too. I feel embarrassed when I fall over so I am going to crack a joke. It makes me feel better, and hopefully others around me. That is how I cope. I know others may not handle things that way. I get that. But it is how I handle my disease. Humor is vital for me. I wouldn’t survive with my laundry list of auto-immune diseases if I did not use humor.
I hope this opened a small window into what living with epilepsy is like. Or maybe, it brought just a moment of awareness to you.