If there was one thing I wish everyone knew about epilepsy…

It would be its influence on history as a catalyst for cruelty.

This may not be the kind of answer you’re looking for, so allow me to clarify:

People with epilepsy are normal. They live normal lives. They have normal intellect. They aren’t physically impaired; they don’t have a mental illness. You could watch them in a crowd for days without picking up anything beyond everyday habits, personality, and preferences that define every person. Then, for reasons unique to every individual even modern science may not be able to identity, their brain “freaks out.”

Even when that happens, though, it’s often invisible. Only “stereotypical seizures” (ie. grand mal) are obvious. You can have seizures as a kid, but they away as an adult. You can be fine as a kid, then get seizures as an adult. There is no bias to ethnicity or economic background. You can be born with seizure disorder. You can get it from a disease. You can get it from a car accident. It’s not genetic, so people without it can have children with seizures (~1% risk) and most people with seizures will have kids without them (1–5% risk, depending on type). Thanks to multiple medical advancements in the past 100 years, there are many methods for controlling seizures, including medication and certain diets, so epilepsy is more invisible now than ever before.

For me: I’ve never had a grand mal. I don’t need medication as behavior treatment seems to keep everything in control. I don’t have an “official” epilepsy diagnosis, as my seizures are currently too infrequent for an EEG to catch and not worth the financial pursuit. I don’t drink or do drugs. I don’t drive. I exercise, eat healthy, prioritize my sleep schedule. I was a straight-A in high school and went on to graduate from one of the top engineering schools in the US.

But for thousands of years, people like me were considered possessed by demons or under the influence of sin.

In the Hammurabi Code (1750BC), we were regarded as second class citizens and could neither marry nor testify in court.

In Greece, seizures were associated by scholars and doctors with the brain, but the general population believed them a curse.

In Christian history, there was a common belief that epilepsy was contagious and made people violent. We were segregated from “the faithful” accordingly.

In the 1400’s Hammer of Witches, witches were not only considered the cause of epilepsy/seizures, but epilepsy/seizures were considered a characteristic of a witch.

Starting in the late 1700’s, some countries began to make it illegal for us to get married. Connecticut was the first US state to follow suit in late-1800’s. By 1956, up to 17 states had this law (last repeal in 1970).

In the 1800’s, Epilepsy Colonies began to pop up around the world. These were places where epileptics could work, but were unable to find employment due to the stigma, or were forced by their families to go to for treatment. The first colony in the US was proposed ~1850 and established in New York, 1896.

Then the mandatory sterilization/eugenics program began in Indiana, US in 1907. Other states followed suit in the following years, leading to a total of 18. In 1927, the Supreme Court even upheld the eugenics laws were not a violation of the 14th amendment (Buck v. Bell, 1927) and institutions could force sterilization onto anyone deemed of “feeble mind.”

The Nazi Party took note of the US for it’s own eugenics program. People like me were among the first to be shipped off in the Holocaust. During the Nuremberg trials, Nazi doctors explicitly referenced Buck v. Bell for their defenses.

I’m only scrapping the surface of Western “Civilization.” Other countries I’m not as familiar with.

Life has gotten better though, especially in the past 50 years. However, the stigma is still very real and epilepsy is still misunderstood.

Growing up, I hid the fact that I had seizures from my family for ~5 years because they regarded any mental illness (which epilepsy is not, though I didn’t know this at the time) as self-inflected laziness invented to mooch off society and get attention. This contributed to suicidal impulses.

Health insurance is a nightmare of uncertainty right now. Epilepsy is one of the major pre-existing conditions to which insurance companies have historically denied or charged exorbitant premiums.

Disclosing you have seizures can still cost you a job in the same sense any stereotype or stigma of questionable competency will.

People can panic when they hear “epilepsy,” so it’s often called “seizure disorder” instead. Of course, we’re advised it’s better if we don’t tell anyone. Of course, seizures terrify people who witness them, but don’t know what’s going on.

So we’re trapped with the continual dilemma:

• Let people know so they can help in an emergency, at the risk of stigma backlash
• Say nothing and hope to live a quiet life

Personally, I choose the latter. It’s not something I think people need to know about me unless I have concern they will have to put up with my stupid brain’s shortcomings at some point in our relationship. At the back of my mind, I can only wonder how many bridges I’m burning with people who look up my name and come across this article.

But even then, I’m used to not being thought of a person because I used to not thinking of myself as a person. I don’t expect anyone to treat me like one. I’m fortunate to have educated friends who do. I’m fortunate to live in a state that actively defends civil rights. I’m fortunate to live in modern era with scientific understanding which has allowed me to live the normal life I do. Because if I lived anywhere else, in other time, surrounded by other people, my life — if I was still allowed to have one — would really suck.

The only thing we fear more than having a seizure is what will happen when others find out. Most people aren’t jerks. But “people” don’t exactly have a great track record.

Kai Austin is a writer, full stack developer, and generalized nerd who may or may not be a robot. You can keep up with his projects on his facebook page: DotKai.