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For whatever reason, my thoughts about shame and stigma are never far from the surface these days. And, a recent post on Facebook triggered another long and involved look into what those of us with epilepsy experience and what we sometimes inflict on ourselves.

The post was from someone with epilepsy who had just received an ice bucket challenge to raise money for ALS. For those of you not in the States, the ALS Ice Bucket Challenge is an activity to raise money and awareness for amyotrophic lateral sclerosis, known as ALS, or Lou Gehrig’s Disease. The nominated person has 24 hours to make a video getting dumped with ice water, or make a $100 donation to ALS research. The person on Facebook was concerned about the challenge, rightly assuming that a bucket of ice water dumped over the head might induce a seizure. The poster was looking for advice.

OK, I thought, here is an odd situation. A person has a condition that is relatively unstable and potentially dangerous. Someone challenges this person to put himself or herself in harm’s way to raise money and awareness for another condition.

Ugh. Well, the obvious answer would have been a simple “no”.

Here is where I began to obsess on the situation. Those of us with epilepsy probably would do it; but, we would try to manipulate the circumstances, as the FB person was doing, to appear normal.

The desire to be or appear to be normal is so strong in us that many times it puts us in harm’s way. We don’t get proper treatment in time. We don’t consider the condition in how we go about our lives. We watch, eat, and smoke things we definitely shouldn’t. And it’s all because we are afraid of appearing to be different.

I spent years developing coping mechanisms to deal with my condition. And this was before my diagnosis.

Despite the fact that my temporal lobe epilepsy was nameless to me, I did things that I knew would harm me just so that I would fit in. Things didn’t get much better when I finally learned what I had. The condition had a name, and with the name came all kinds of explanations for what had been happening!

That should have thrilled me, relieved me, and given me peace. Instead, it accelerated my level of shame and self-hatred. Self-hatred to the extent that I nearly threw up when the doctor told me I had TLE. I will never forget the shock or the reaction. It kept coming in nauseating, mind-numbing waves for a long time. It changed the way I saw myself, and it introduced images that I struggled with daily.

In my search for an explanation, a pattern, or even a clue, I looked for the reason why. Not why I had epilepsy, but why I felt like I did about a condition I knew next to nothing about. I, who had been in health care for years researching diseases and conditions, and viewing them dispassionately.

I came to the conclusion that my impression of epilepsy had been built long before I left grade school, incorporating those twin life-changing elements of fear and ignorance. Here are a few interesting facts about the past and present that might be affecting you without your knowledge.

In Nervous System Mysteries: The Social Stigma Surrounding Epilepsy, Paulomi Bhattacharya looks at the stigma that has emotionally crippled sufferers and limited funding for research.

“Along with the slow rate of development of epileptic research, victims of this ailment remain as ostracized from society as they did ten, twenty, even thirty years ago,” she says.

She goes on to talk about the patient’s identity crisis, saying “Because the brain is such a vital part of the human body, one major challenge for epileptic patients is definitely coming to terms with the fact that their brains work differently. Patients have a deeply altered perception of themselves and struggle with accepting their condition, especially in relation to everyone else around them.”

In reference to the social stigma, Bhattacharya says, “Humans have an inherent habit of distinguishing and labeling differences amongst themselves, and this automatic categorization alienates epileptic patients to the point where they face extreme discrimination. In a society so heavily plagued by predetermined views and quick judgment, epileptic patients are often singled out to be ‘abnormal’ and are not guaranteed various fundamental rights.”

She points out that not until the late 1980s and early 1990s was it legal for people with epilepsy to marry in the United States and Great Britain. Until the late 1970s, epileptics in the US could not go into public buildings, such as restaurants, shopping centers, and theaters. Sure, all that’s changed, but the underlying social stigmas still exist.

Finally, Bhattacharya says that in the US, China, and Great Britain, a high percentage of the population wants to deny epileptics the ability to work, requiring them to stay home and out of sight. This view is nearly 100-percent in developing countries.

After reading this article, I realized that no matter what I think of myself on good days, I am still compliant with how other people view my situation and restrictions. Exposure to fluorescent lights causes seizures, as do large crowds, loud noise, and lots of movement that is out of my control.

So where am I in this? I am at home. I can’t figure out how to have a life and not expose my condition on a regular basis. I break out in a cold sweat going to the doctor, because I will have to tell the staff about the lights and they will have to turn them off in the examining room. If I don’t, I will have a seizure, or two.

I am afraid and embarrassed, because I have a brain condition that cannot tolerate many kinds of light and movement. I can’t take medication for it for several reasons, including the fact that most of them cause seizures. Does any of this make me less than a person, or are they just physical issues that should be accommodated by society the way we accommodate people who use wheelchairs or need handicapped parking?

A 2008 article in The New York Times (Easing the Seizures, and Stigma, of Epilepsy) quotes Dr. Orrin Devinsky, director of the Epilepsy Center at New York University, as saying epilepsy carries a significant level of embarrassment “The feeling, for a lot of people, is that it does carry a lot worse stigma than a cancer or an HIV even. At some level, it’s society that needs to wake up and realize it’s just another neurologic disorder.”

In the same article, Warren Lammert talks about public perceptions of the disorder. “(E)ven among well-educated people, people don’t like to talk about epilepsy,” he writes. Lammert runs a financial firm in Boston. In 2002, he founded an epilepsy organization with Dr. Devinsky. But, more important, his daughter has epilepsy.

No, we as a society do not often talk about epilepsy, and those of us with epilepsy do not talk about the condition without a measure of shame and embarrassment. This needs to change, and the only way it can change is for those of us with the condition to start feeling more charitable about our own issues and to be “kinder to ourselves” as my yoga teacher would instruct.

It would be nice if the public awareness level was higher, if different attitudes existed, if society were less fearful and better informed. But, all the goodwill in the world won’t matter if, at the end of the day, we are still ashamed of ourselves.

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