Is Epilepsy a Disease or Disorder?

By Stacia Kalinoski

2 min read

When I was first diagnosed with epilepsy in 2010, I just assumed epilepsy was a disease. Like cancer or heart disease, it can impact anyone and has multiple causes. But one of my doctors explained that epilepsy is considered a spectrum disorder because many epilepsy types are symptomatic, caused by other conditions like birth trauma, brain tumors, infections, and more.

Calling it a "disorder" felt less serious

Using the term disorder versus disease made me feel like epilepsy wasn't as serious as I should have taken it, and it put me in a state of denial.

Hey, it's a brain disorder, but seizures start and end within a few minutes, I have a period of confusion, and then I'm on my way.

Even a handful of serious injuries didn't deter me, like falling into a brick wall and face-planting into a hot iron. It wasn't until I lost my career following a seizure that I realized that epilepsy can take complete control of one's life.

Inconsistent terminology among epilepsy organizations

Since then, I've seen major hospitals and epilepsy organizations use the words disease and disorder interchangeably. Cleveland Clinic calls it a brain disease and the World Health Organization uses the term "chronic noncommunicable disease," while Mayo Clinic calls it a central nervous system disorder, the CDC calls it a brain disorder, and the American Association of Neurological Surgeons calls it a disorder of the brain.

In 2014, Executive Committees of the International League Against Epilepsy (ILAE) and the International Bureau for Epilepsy officially changed the definition from disorder to disease. Their viewpoint changed mine because the ILAE is the main governing body responsible for the terminology of epilepsy. I've had the privilege to meet epileptologists on their task force.

There were a few reasons for their decision, one being that epilepsy is a heterogeneous condition like cancer and heart disease, and those are called diseases. Using the word disease instead of disorder, the ILAE believes, will help the public realize how serious epilepsy is.

"Disease" conveys the seriousness of epilepsy

With so much talk about the misunderstanding around seizures and epilepsy, I agree this was a good decision. The public knows other neurological diseases like Alzheimer's disease and Parkinson's disease are very serious. I can't make the assumption everyone doesn't take epilepsy as seriously, but I do believe that putting disease into the definition helps.

Epilepsy is a chronic, life-long battle for some, while it can be cured for others, just like other diseases are. I'm fortunate to have had a successful brain surgery.

Every patient can have their own definition of epilepsy

I do know it's a hot topic of discussion around people with epilepsy, though, and some believe disorder should be used, and I respect that choice. Everyone lives with epilepsy in different ways. Seizures triggers, auras (or no auras), medication doses, and treatments all vary from person to person, and so too do their lifestyles. Medication completely controls seizures for some people, but not others. Maybe some people with epilepsy have a strong support system, while others feel isolated.

In the end, I wish the term disease would have come earlier to convince me my seizures were more serious than I treated them.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The EpilepsyDisease.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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Tim Ulmer Contributor
Stacia, your explanation is a good one. I've been epileptic since I was a toddler, over half a century ago. And during that time, public ignorance being what it used to be--and continues to be in a lesser respect--I shuddered to hear someone label it a "disease" because ignorant people view a disease as being contagious and threatening to themselves. He, I also had allergies, and my sniffling and running nose wasn't threatening to them. I even have trouble using the word "patient" because I think many people yet-to-be-schooled new people tend to exaggerate their own limitations to think of themselves as a "patient". So a friend of mine, at Angels of Epilepsy, Natalie Beavers introduced me to the idea of being a "survivor". I like her idea, but for new people, I think that they need more time and self-appraisal before that term's appropriate. You have given me a good explanation of how to explain what is a "Disease" to these new people. Thank you. Tim Ulmer, Epilepsy Moderator
MAL3 Member
On 'Crazy Ex-Girlfriend' the main character is very excited to get a diagnosis (she sings a whole song about it), but then is seriously disturbed to have a condition (BPD) rather than a disease (she sings a whole song about it). She says that a condition is something you are, but a disease is something you have; thus she'd prefer a disease. I'd say the terminology isn't as important as the individual and their upbringing by parents accepting of disability or abusive/dismissive towards disability/condition/disease/class/race/gender/sexuality.
1. Kailah Holmes Community Admin
 <inline-mention username="MAL3" user-id="4747161"/>, such a great perspective to bring and share in the community! Thank you for enriching this experience on the topic of epilepsy labels. Wishing you well! Warmly, Kailah H, Epilepsy Team Member
2. Gabrielle Foote Moderator & Contributor
 <inline-mention username="MAL3" user-id="4747161"/> , you have such an enticeful point of view. Thank you for sharing. Warmest regards, Gabrielle F, Epilepsy Moderator