Did you know that 1 in 26 people will develop epilepsy in their lifetime? That’s not a small number. If someone told me that I had a 1 in 26 chance of being shot when I walked out of my house on any given day, I’d put on armor. (You can’t ‘protect’ yourself from getting epilepsy, but you know what I mean.)

So, my question is, for something so common, why aren’t more people talking about it?

It’s the 4th most common neurological condition in the United States.

It’s associated with substantially higher deaths than the population as a whole - SUDEP (Sudden Unexpected Death In Epilepsy) being the most common cause, and researchers predict that certain kinds of epilepsy can shorten life expectancy by 10 years.

In 2012, the annual direct medical cost of epilepsy in the U.S. was $9.8 BILLION. I’m sure a decade later it’s probably doubled. And, I can believe that. I have to fight my insurance company year after year for them to cover the medications that I need just to live a ‘normal’ life.

So, let’s talk about it. I’ve written a whole book where the protagonist has epilepsy, and I still felt nervous using the word ‘epilepsy’ when pitching it to agents. I tried to emphasize that it wasn’t just an ‘epilepsy book.’ Looking back, I wonder why? Now, after doing interviews, pitching in real time, running a support group, and being an active advocate for epilepsy, I understand:

For some bizarre reason, there is still a stigma attached.

It’s hard to undo centuries of misinformation and misunderstanding of seizures. No, people with epilepsy are not full of demons. People with epilepsy are not mentally ill. (Although mental health can be affected by epilepsy for a number of reasons.) People with epilepsy are not dumb. They can hold high-pressure jobs, many drive, but as it is an invisible condition/disability that can be controlled with medication, many people who have epilepsy don’t feel the need to disclose it or want to because they are afraid of the consequences. And that fear is justified, as we live in a society where the majority of people still think that we can swallow our tongues, and that all seizures require a hospital visit.

Look around your office, the coffee shop you are in, the next meeting you attend, and count the number of people there. It’s not hard to be in a room with 26 people. So, learn seizure first aid, buy books that include characters with epilepsy, attend epilepsy fundraising events, donate to epilepsy research.

Let’s stop the stigma and open the conversation. It all starts with a little education.

Resources

13 Common Epilepsy Myths, Debunked: https://health.clevelandclinic.org/13-common-epilepsy-myths-debunked/

Seizure First Aid: https://www.cdc.gov/epilepsy/about/first-aid.htm

Ideas on How to Fundraise for Epilepsy Research: https://www.epilepsy.com/volunteer/fundraising

Epilepsy Research Labs: https://my.clevelandclinic.org/research/neurological/epilepsy (Cleveland Clinic. Contact information on page.)

https://epilepsycenter.ucsf.edu/research-ucsf-epilepsy-center (UCSF Epilepsy Center. Browse trials and contact doctor on page directly!)