Epilepsy is a neurological disorder that results in someone having seizures. Epilepsy has been around since the beginning of time. As early as 2000 BCE, ancient Akkadian text from Mesopotamia documents symptoms of epilepsy thought to be caused by the god of the moon (Bone, 4). As time progressed, ancient Greeks like Hippocrates did not believe that epilepsy was caused by evil spirits but was a medical problem that originated in the brain (Bone, 5). Hippocrates was correct and over time modern medicine has produced treatment options making it possible for many individuals with epilepsy to have a productive life. Why then is it still one of the most stigmatized conditions on a global level?
Understanding epilepsy from the inside-out
The reason for the high level of stigmatization is the fact that not many people know what epilepsy is or how it affects someone. Someone can develop epilepsy due to genetic mutations in the brain, traumatic brain injury, stroke complications, tumors, and infections such as meningitis, and in some cases, the cause is unknown. Depending on what area of the brain is affected and the severity will result in what types of seizures take place. Epilepsy is either focal, meaning abnormal neuronal activity is taking place in one part of the brain, or generalized, which means the entire brain is affected.
According to Mayo Clinic, a seizure is a sudden, uncontrolled burst of electrical activity in the brain, which results in changes in behavior, movements, feelings, and level of consciousness. Some seizures may last a few seconds to a minute and not cause the person to lose consciousness. Other seizures can be severe, causing someone to lose consciousness. If a person has many seizures, known as status epilepticus, medical attention is needed to help stop seizure activity.
Treatments such as medication, medical devices such as a vagus nerve stimulator, the ketogenic diet, and surgery can help someone get their seizures under control and have a better quality of life. In the United States, 3.4 million people have active epilepsy. 70% of the epilepsy community can control their seizures through treatment.
Epilepsy remains stigmatized today
Many people with epilepsy, however, hide their condition in fear of discrimination such as unlawful termination of employment, healthcare discrimination, and educational discrimination. Despite epilepsy being protected by the Americans with Disabilities Act, many employers still discriminate. Many employers still see individuals with epilepsy as a liability, not potential employees. With the advancements in technology and being able to work virtually, many opportunities have opened up allowing individuals with epilepsy who can work to gain jobs that years ago would not have existed.
Because of the advancements in medicine and technology, there is no excuse for the stigmatization that people with epilepsy continue to face. With the education and resources of programs such as DEI, we can educate others to help end the stigma around epilepsy and help create better educational and economic opportunities. This will cause a win-win situation because instead of people with epilepsy being underemployed or unemployed, now they are contributing taxpayers who can find satisfaction and happiness in what they do, and they are contributing to the economy. Once we can get past ablism and remove the liability label off of people with epilepsy and others with disabilities and differences, we can accomplish so much more for our communities and society.
Times are changing for the community
Thankfully, people in the epilepsy community are starting to advocate more for themselves and in time, the stigma that has been placed on the community will be lifted. It will not happen overnight, but the community is gaining strength and working towards it. Take the time to learn about conditions like epilepsy, it not only benefits you but for someone who has epilepsy, it will benefit them as well. Knowledge is power, and by educating one another, we can work towards making a difference for the better.
Resources:
Bone, I. (2022). Sacred Lives. The Book Guild Publishing.
Mayo Clinic (2023). Seizures, Symptoms, and Causes. Mayo Clinic.
About the Author
Natalie L. Boehm is the president and founder of The Defeating Epilepsy Foundation. The Defeating Epilepsy Foundation is a 501c3 not-for-profit organization providing advocacy and educational services to the epilepsy community. The Defeating Epilepsy Foundation awards educational scholarships and grants to help people with funding for a seizure-alert dog. You can find more information about their organization at www.defeatingepilepsy.org. You can follow them on social media on Facebook, Twitter, Instagram, LinkedIn, and YouTube. To donate, please go to https://donorbox.org/help-us-to-defeat-epilepsy.