Epilepsy Labels: Is It a Disease, Disorder, or Condition?
We get it. Names and labels matter. While they are often meant to inform, labels can sometimes feel stigmatizing.
Some people living with epilepsy take issue with it being called a disease. They may think this makes epilepsy sound contagious. But many diseases are what is called non-communicable. This means they are not caused by infection. These diseases can not be transmitted from person to person.
Non-communicable diseases are typically caused by genetics, diet, environment, or stress – acting together or alone. Some examples of non-infectious diseases include:1-6
- Alzheimer’s disease
- Cardiovascular diseases
- Chronic obstructive pulmonary disease (COPD)
- Diabetes mellitus
Is epilelpsy a disease?
In 2014, a big shift in thinking occurred about epilepsy. The International League Against Epilepsy (ILAE) changed its definition of epilepsy from a brain disorder to a brain disease. The ILAE is a large organization that focuses on educating people with epilepsy, caregivers, doctors, and others about epilepsy. They believed the name change would better communicate the gravity and implications of epilepsy.7
But, around the same time, a survey showed that 9 out of 10 people living with epilepsy strongly disliked the label “disease." And some doctors worried about how people would view themselves with the new label.7
In truth, the word disease is itself poorly defined. Merriam-Webster defines disease as an illness or condition that prevents the body or mind from working normally.8,9
In this sense, epilepsy is both a condition and a disease. Which may help explain why some organizations call epilepsy a disease, while others call it a disorder or a condition. For example, the World Health Organization uses the disease label, while the Epilepsy Foundation and Centers for Disease Control and Prevention use the brain disorder label.10-12
So what do these labels mean?
The 4-1-1 on definitions
Unfortunately, even the definitions of disease, disorder, and condition are unsettled. But broadly speaking, the following captures their similarities and differences:13-15
- Disease – Pathophysiological processes (or responses) with a typical set of signs and symptoms due to internal or external factors
- Disorder – A disruption to function or structure (or both) in the whole body or a part of the body
- Condition – An abnormal state of health, physical fitness, or the results of a disease or physical ailment that interferes with normal activities or wellness
One reason the ILAE changed their definition of epilepsy to a disease is because they felt disorder implied it was a "functional, temporary disturbance" that "minimized the seriousness of epilepsy."7
Inconsistent language used for epilepsy
The inconsistency in epilepsy being labeled a disorder, condition, or disease also reflects differences in language used by doctors, researchers, and people living with the condition.
Doctors and researchers tend to be concerned with understanding and identifying symptoms to reach a diagnosis and prescribe treatment. Whereas people living with epilepsy tend to be concerned with managing or eliminating symptoms to achieve better bodily or mental function.16
These perspectives are 2 sides of the same coin. But they also offer insight into why people may gravitate toward different labels.
Focus on the seizures
There is agreement that the source of epilepsy is in the brain. And the type and length of seizures that occur are key to obtaining a proper diagnosis and treatment.12,17
Focusing on understanding the types, causes, treatments, and lived experiences of seizures may be more useful than trying to get everyone to agree on a label for epilepsy. After all, in spoken language, epilepsy is usually referred to simply as epilepsy.
Understanding and support
In this community, our focus is to support people living with epilepsy and those who care for them. We understand that not everyone agrees with labeling epilepsy as a disease. We also understand why some advocates, doctors, and researchers support the name change. And we are listening. Because you matter to us.
Have you utilized an epilepsy center?