Describing The Indescribable: Unveiling The Spectrum Of Seizure Experiences by M Marathe

One in ten Americans will experience a seizure in their lifetime. Most people think that all seizures involve a loss of consciousness but in fact, seizures involve a wide range of experiences that are surprisingly hard to describe.

Knowing the correct medical terminology for seizures can provide valuable information to doctors and patients alike, but these terms do not capture many elements of the seizure experience.

Hearing another person describe seizures similar to one’s own can be a powerful moment of connection and catharsis for people with epilepsy. Therefore, provide people with epilepsy a platform to describe their seizures in their own words. By doing so, we want to show listeners with epilepsy that they are not alone -- there are many others like you, experiencing similar seizures and living through them. This episode represents a first step towards a patient-centered seizure vocabulary.

This podcast was created by Sue Chong, Jack Withers, and Megh Marathe, drawing upon in-depth interviews with twenty people with epilepsy from all walks of life in southeast Michigan. These interviews also contribute to Megh's PhD research.

This project was made possible by the Rackham Program in Public Scholarship, a disability studies mini-grant, and the UROP program at the University of Michigan. Special thanks to Russ Derry from the Epilepsy Foundation of Michigan, and professors Elizabeth F.S. Roberts, Dr. Sucheta M. Joshi, Kentaro Toyama, and Joyojeet Pal from the University of Michigan.