Breaking the Silence: Epilepsy and the Burden of Stigma

I have a secret I have told very few people: I have epilepsy.

I first noticed something was “off” in the fall of 2015, at age 62. I was recovering from shingles and facial paralysis. After a month, these symptoms disappeared. But I began being hit by electrical shock waves hitting my right ribcage, followed by severe anxiety attacks. My hands would shake, and my heart would pound. But just a few minutes later, I would feel perfect! I wondered: Was I having panic attacks? Doctors later told me these were likely “petit mal (absence) seizures.”

In the fall of 2018, I woke up from a deep sleep. I bit my tongue and was bleeding profusely. I called 911 and was assured by paramedics that I was in no danger of bleeding to death, but to get to an emergency room. At the hospital, they ran blood tests, a brain scan, an MRI, and an EEG. The diagnosis was epilepsy. The doctors assured that most seizures can be brought under control with medication.

I was frightened, not just about the diagnosis, but the stigma that would come with it. What should I tell my friends or neighbors? I felt it was better to keep it secret. I recalled my 10-year-old childhood friend with epilepsy, teased by his classmates and the stigma he suffered.

Upon release from the hospital, I saw a neurologist on a regular basis. I was prescribed an anti-seizure medication. For the first year, I had no symptoms. Then, unexpectedly, I began suffering from breakthrough seizures. Unlike the tonic-clonic seizure of 2018, these were smaller, localized ones in which I'd feel a sudden, violent electric shock, followed by a few minutes of confusion, dizziness, rapid heartbeat, high blood pressure, and sometimes falling to the ground. I would recover in minutes and feel perfectly fine. 

I began to keep a seizure diary to determine what provokes these episodes. I've learned that my triggers include bright flashing lights, changes in temperature while bending my neck near a hot stove or electric iron, and a lack of sleep, especially around the holidays. It has now been 7 years since my diagnosis. I still have occasional seizures, but mostly, I am living a completely normal life. 

That said, the impacts of epilepsy are difficult at times. The stigma can be socially awkward. How do you explain to a group you're with that you need to go home early and get enough sleep? That you must limit sodium, and that you can't watch a movie that has dazzlingly bright lights. Or you're feeling symptoms that could signify a seizure coming, but maybe you'll feel better if you can lie down, shut your eyes, and rest for just a few minutes. Some people ask questions like, "Do you throw fits? Is it mental illness? Did you lose any IQ points?" I tell them there’s a sudden burst of electricity in the brain which can produce seizures or what some people call “fits.” It can take many forms, from a person appearing to be merely daydreaming to falling on the ground. I tell them 1 in 26 people will develop this condition.

Driving and transportation are major concerns for people with epilepsy, many of whom cannot drive. In November 2023, Miami-Dade County cut bus services, forcing some riders to walk up to a mile to reach a route. The loss of funding for the North Miami Foundation’s van service has further limited access to essentials like grocery stores. These changes place an added burden on people with epilepsy, who must avoid overheating and overexertion. Despite raising these issues at Commission hearings and with transportation officials, I feel the full impact of these cutbacks remains underrecognized.

It has taken me seven years to write this story. I’ve decided to reveal that I have epilepsy, once and for all. I believe the more knowledge and education the public has, the less stigma there will be. 

Keep up your spirits and count your blessings. Believe in a higher power, whatever your faith! You are not alone. I am coping by taking just one day at a time. Each morning, I pray that I'll be able to get through the day without a seizure, and each evening I thank God I got through the day feeling well and healthy. I keep a seizure diary and am encouraged by the non-seizure days. I think that the more people learn about epilepsy, the less superstition and stigma there will be.