August 24, 2007

Stop Denying Epilepsy...for all of us!

There can be no more empowering, liberating act, than to fully accept yourself. So why do we keep E. secret?

Whenever I say aloud that I am epileptic, there are always individuals wanting to talk with me about it. Some say they know someone with it, others tell me they used to have it, and quite rarely, someone will reciprocally identify as a person with E..

I really began to realize how commonplace it is for persons with E. to deny this part of themselves, after I quit making my own denials.

Perhaps, like me, one's parents taught you not to speak of it to others. Or, maybe it was some reaction from another person that taught you to admit "once having it", but to conclude your admission with "...but it's gone now" in order to make certain they would accept you as an equal.

Nobody told me that to keep secret my condition might create psychological problems, in addition to my epilepsy. And, I am certain that few of us have been so educated about E. and the detrimental effects denial has on a person's psyche.

I feel just a little cheated by the medical community for this because they knew about epilepsy denial as a common phenomena since 1956. In that year, Drs. Donn Tippett and Irving Pine studied the psychiatric extremes of epilepsy denial. Their published study acknowledged the familiar, epilepsy denial, as common in their patient populations. They presented their findings at a meeting of the Ohio Psychiatric Association, then published them in the Journal of Psychosomatic Medicine; the article is titled "Denial Mechanisms in Masked Epilepsy" (1957).

Denial is a well-known ego-defense mechanism in psychiatry. When one makes use of this psychological mechanism, they do so because, as Tippett and Pine point out, "It serves the ego by keeping from consciousness what the environment and reality would consider unacceptable... It is a common experience that epileptic patients avoid detection of their seizures on a conscious level by concealment and even lying."

Tippett and Pine continue by saying it is not unusual for epilepsy patients to react to their diagnosis with strong feelings of disgust, fear, shame, guilt, horror, a sense of personal disfigurement and self-loathing. In a nutshell, these are learned and perceived responses: the lessons one learns, from the doctors who treat you, from the family who cares for you and from the society surrounding you. If those around you react poorly to your diagnosis, you may feel you have something to hide from the rest of the world.

Since the mid-1950's, researchers have written even more on this issue. Now, it isn't simply that epileptics want to control disclosure of their E. to others, it has become a further refined research question, seeking to know who denies E. most often.

Who are the most frequent deniers?

To date, I have not discovered specific studies to tell us whether women or men deny E. more frequently. (That does not mean they haven't been done.)

Instead, there are many generalized studies, that look at gender and the action of denial in illness, violence and addiction. They suggest that dependent individuals are most likely to deny. For some scientists, the reasonable conclusions from such data are that women probably deny most often.

But then there is research that says the opposite.

Focused on women, and their specific coping skills in the face of illness, these other studies suggest that women are less likely to deny illness than are men, affected by the same illness. For example, between men and women who experience a first heart attack, women are most likely to accept the diagnosis, while men are most likely to fluff it off as an anomaly, or something that will never happen to them again.

Anecdotally, if one goes by the things epileptics talk about online, both gender groups are forced to face the ubiquitous disclosure crisis. Who hasn't agonized whether or not to fill in the employment application fully, or to tell someone you just met that you have epilepsy? The lingering question for the person with E. is whether to keep E. secret or to tell everyone that you have it.

But not telling can make you do crazy things!

I can recall, for example, a woman I once knew. She told my aunt that she was getting married for the second time. But she didn't look happy about it, the way engaged people are expected to look. When my aunt congratulated her, she said "Yeah, thanks." So my aunt asked her what was bothering her, why wasn't she happier? The woman answered: "Well, I suppose things will be just fine, until I have a seizure..."

Puzzled, my aunt and the woman were quiet for a few minutes. Then my aunt spoke up: "Haven't you told him yet?"

"No" the woman replied. "I'll just wait and when he sees me seize, he'll probably want to divorce me---just like my first husband did."

"You mean you didn't tell your first husband either?" my aunt said.

"No---I could never seem to find the right time."

There is also the story of the young man I knew, who refused to tell anyone where he worked that he had epilepsy---even after he rammed the company car into a 50-year old pine tree. When asked what happened, he said "I was trying to avoid the other car!" Later, the police report concluded that the man had been alone on the road when the accident occurred.

And what is one to think of Chief Justice Roberts? Instead of acting as a agent for the Common Good, he allowed an entire profession to obfuscate on his behalf. Pitiful...

In the end, I have to say I find the act of disclosing my E. helpful and empowering to more than myself. If more of us would take the chance, speak out and stand up for ourselves, we might find that the misinformation currently circulating about epilepsy is diminished. When more of us speak up and stop denying E., we will all have one less thing to fear in our lives.

Risking the truth frees all of us.

3 comments:

Anonymous said...

Hi. I like your blog.

I have been epileptic since age 9 (31 now). While I do not deny my epilepsy, I am very selective as to who I tell (unless they absolutely need to know) because many people *will* stay with the myths and stigma rather than the truth for some reason. So, being selective as to who knows is a way of protecting myself from the ignorant stereotypes. I have had some bad experiences telling people that did not necessarily need to know. When I was a kid, some kids weren't allowed around me because of e, I was bullied, thought of as a freak, and generally mistreated--even by family. I even lost my job once because I told my boss.

The truth is, most people don't know anything about e except the myths and stereotypes that they hear, and many will refuse to believe information if it's given to them by an epileptic, because they assume that the epileptic doesn't really know. I know this from a lifetime of experience.

I believe that Chief Justice Roberts was only trying to protect himself by not letting the world know. Not telling does not make him incapable of doing his job like so many people think.

It's Her said...

Hey there,

I don't have epilepsy, but Cystic Fibrosis, which for some reason I was always secretive about (not denying it, just didnt want people to know). And I don't know why. I think it was fear of being different for me.

BUT like you, by being open, I think it helps to both raise awareness about it and dispell myths (that it's contagious, that we all DIE before we're 20 etc).

Anyway, here's something for you - I know someone with E and CF. *shock*! Like your blog btw. Tis good! :P

Anonymous said...

Hey Paula,
It was really great talking to you the other day. I had some time and read your blog today. I can't believe those stories about denial and how the lady kept those things from her husbands. I hadn't realize that the fear of discussing E. or acknowledging it was so deep and potent in the lives of those with E. The stories in your blog really illustrate how crucial discussion is for society and the E. community. The denial picture with the Cezanna allusion was great...