Robert J Mittan. The Exceptional Parent. Volume 39, Issue 4, April 2009.
Probably one of the most challenging dilemmas facing people with epilepsy and parents of children with epilepsy are the questions of if, who, when, and how to tell others about the epilepsy. There is fear of stigma and rejection. Yet there remains the need to reveal seizures before they reveal themselves without your control. Telling others is the way to take control of the disclosure and ensure the best chance of acceptance and even support by others. This is the first of a set of four articles that will provide you the understanding and practical skills for revealing epilepsy and seizures to others. I begin with why. Before the if, when, and how make any sense, you need to know why. The why explains just how important the how is to you or your child.
Epilepsy and seizures are conditions that have been well known to man throughout history. Before science and modern medicine, epilepsy had to be explained by what people understood back in that day. In ancient times, afflictions of all kinds were often thought to be the work of evil spirits or demons. This particularly made sense for epilepsy. When a seizure occurred, the person was unconscious and appeared to have left his or her body. So it must be that some sort of demon took control of the body to cause the thrashing and foaming at the mouth. The person would only “return” once the event was over, and the demon gave back control of the body. For thousands of years, this was the explanation for seizures.
Ironically, around 500 B.C., Hypocrites in ancient Greece wrote that epilepsy was a physical disorder based in the brain. His thinking was much too ahead of his time. The ancient world did not have the kind of medical tools needed to show seizures were indeed a physical disorder. Instead, the common ancient beliefs in spirits, gods, and demons were used to explain illnesses and assign a cause to traumatic events such as seizures.
Out of this heritage grew the idea that seizures were caused by demons or evil spirits. This reasonable explanation for ancient times survived through the Middle Ages and as late as the 1800s. This explanation appears in many religious and medical writings that date back to that time. With such a long history, this “understanding” of epilepsy has persisted in a subtle form even into the modern day.
The ancients believed for a person to be possessed by an evil spirit, the person must have done something wrong or evil. Thus the person must somehow be bad. It is the ancient idea of guilt by association. If you have something evil in you, you must have done something bad. This is the origin of stigma in epilepsy.
This line of thought remains unbroken in many cultures, including our own. The idea has been changed by current medical understandings, but it still persists. Today, most people do not believe seizures are caused by evil spirits or demons (though some still do believe this). Instead these ideas have been changed to fit our culture’s current understandings of physical illnesses. Like Hypocrites, we understand that epilepsy is a physical disorder arising from the brain. But through this lens of modern understanding, the old beliefs and “guilt by association” still persist.
Persons with epilepsy are often thought to less intelligent than other people or that they have intellectual disabilities. People with epilepsy are often seen as more emotionally fragile and less able to cope than those without epilepsy. And worse, there is still a sense of shame associated with having seizures–the clearest remnant of “guilt by association” after three millennia of “demons.”
Certainly if you were to ask someone about these thoughts and feelings, they would deny their opinion has anything to do with evil spirits. Instead, these ideas have become subtly imbedded in the teachings of our culture, which is rooted in past history. These cultural ideas are so widespread even parents of children with epilepsy often hold these notions about their child in the back of their minds, even if they would deny any such feelings if asked directly. The test for this is easy. Just think about how enthusiastic you would be to tell friends, relatives, and coworkers about your child’s seizures compared to how easily you might tell them about your child’s recent bout with strep throat. (For a complete discussion of the impact of epilepsy on parenting, see EP’s three-part article series on “How to Raise a Child with Epilepsy” from the October, November, and December 2005 issues.)
The same test can be applied to the community in general. How much more willing are people to hear how a child got a broken arm versus how enthusiastic they are to listen to a blow-by-blow description of the child’s last seizure. In digging these responses up, there is a natural tendency for parents and others to feel guilty about having these (normally) hidden feelings and ideas that stigmatize. In truth, it is not the parents’ fault. They have nothing to feel guilty about. These are just the feelings our culture has taught us all to have. And our culture has done this without our awareness or permission. These feelings are just one small part of a huge iceberg of feelings and ideas that our culture has taught us about many different things, not just epilepsy. These feelings and ideas fall below the surface of our conscious, everyday thought, yet nonetheless influence our day-to-day feelings, judgments, and actions.
The Self Psychology of Telling Others
Curiously, whether or not to tell others has a stronger affect on ourselves than the person we are talking to. How can this be?
What does not telling about epilepsy do to the person who is hiding this secret from others? If there were nothing wrong with having epilepsy, why would a person keep it a secret? Certainly, if the person had just won an award for her business performance or received an “A” in a school course, she would not hesitate to tell others about it. She would feel pride in sharing such information. The act of sharing would make her feel good about herself. Chances are good this behavior would be repeated among many people, each time raising her level of self-esteem and self-acceptance.
Let’s think about the person who decides not to tell others about epilepsy. By not telling others, this person is keeping a secret about himself–and a rather large secret at that. The other person, of course, is unaffected by this. The other person doesn’t know of the secret so they don’t have a feeling or idea about the first person’s epilepsy at all. The person not telling knows he has something about himself he refuses to share. Why the refusal? Because he is ashamed of it and is afraid of personal rejection. By keeping epilepsy a secret, the person is telling himself that there is something about himself that he is ashamed of. By keeping the secret, he is telling himself that others would reject him if he disclosed it. He is telling himself he is not really socially acceptable if others know of his medical condition.
Each time he refuses to tell someone about epilepsy, he is telling himself in a loud, clear voice: “There is something about me to be ashamed of.” Each time he refuses to tell someone about his epilepsy, he is telling himself in a loud, clear voice: “I am not acceptable as a person the way I am.” Each time he refuses to tell someone about his epilepsy, his self-esteem drops. All of this has no effect upon the other person because the other person has no idea what is going on. All the emotional consequences fall upon the person with epilepsy. Shame builds and self-esteem suffers.
Not telling can become a vicious circle. Each time the secret is kept, the person feels worse about herself and less attractive to others. But the problem does not stop there. When you feel bad about yourself and you feel unattractive to others, the natural reaction is to begin avoiding people. This is made even worse if you fear a public seizure might blow your secret. As a result, the person who is afraid to tell others isolates herself from others. Each avoidance reminds her again that she is ashamed of herself and unacceptable to others. As the feelings grow, so does the isolation. For many people with epilepsy, these feelings and behavior can grow to the point where the only relationships they have are with their immediate family. The rest of the world becomes lost to them. This can be a miserable way to live, and depression is a common consequence.
What happens when a person does tell others about her epilepsy? First of all, it gives her the chance to find out that there are many others who won’t reject her out of hand when they find out. In fact, some research has found the most common reaction by others to telling about epilepsy is curiosity, not stigma. “Really?” “Does it hurt when you have a seizure?” “Do you have many of them?” “What do they look like?” “Should I do anything if you have a seizure when I am around?” It gives her an opportunity to teach the other person about epilepsy (and it is good to know some facts for this teaching process, which I will share later).
What effect does revealing epilepsy have on the person with epilepsy? By sharing the fact that he has epilepsy, the person is actually telling himself that it is OK to have epilepsy, that it is not a personal failure but simply a common medical problem. (Approximately one in every 30 people will have epilepsy in their lifetime.) It is saying that there is nothing about me to be ashamed of. It is telling himself that there is nothing in me that is socially “bad,” and epilepsy is just a medical disorder. Rather than tearing down self-esteem, telling others builds selfesteem. Each time epilepsy is shared it reaffirms to the person: I am fine with others just the way I am.
Are you going to encounter people who will reject you for your epilepsy? Of course! There are always people who will reject others for any number of things. Some people don’t like other skin colors. Some people don’t like people who are too skinny or too heavy. Some people don’t like certain hairstyles or clothing styles. Some people don’t like others they think are too old or too young. The list is endless, and epilepsy is certainly not at the top of it. You can’t expect everyone to like you. Just because they don’t doesn’t mean there is something wrong with you having seizures. It is just the way life is. But if you buy into the idea that each rejection says you are unacceptable because you have epilepsy, you are handing the fate of your self-esteem over to someone who is obviously ignorant, or more likely, unknowingly culturally programmed to think epilepsy is bad. Is handing over your self-esteem to someone who is unknowingly ignorant about epilepsy a good thing for you to do?
The only self-esteem worth having is the self-esteem that comes from inside you. There are always going to be people who reject you, even if you don’t have epilepsy. If you believe their rejection is a true comment on your worth as a human being, I can predict right now you are going to be hurt repeatedly affecting your quality of life. The irony is that the person may be rejecting you more for the way you look or dress than your epilepsy.
Think about it. Most people have their own clothing style they like. They expect that some others will like their style and some won’t. Yet they won’t change their style, and they feel none the worse for those who “don’t get it.” In my case, I have a very unusual moustache. Some people love it, and some people absolutely hate it. It makes no matter to me because I like it and have kept it for 30 years. The same is true for epilepsy. Some will get it, some won’t. Either way it doesn’t really matter. If you like yourself and believe in your own mind that you are a worthwhile human being and believe there are people you are important to (and there are), you are going to do just fine.
Telling others shows trust in them. All true friendships are based upon trust. If you had a good friend and you did not tell them you had epilepsy and then one day you had a seizure, what do you think that good friend would think? “If I am such a good friend, why didn’t she tell me? She obviously doesn’t trust me to be her friend, so why should I trust her to be my friend?” Keeping secrets just lost you a friend as well as your self-esteem.
Teaching others to Stigmatize You
It turns out that there is another sinister problem that occurs when a person hides epilepsy. Research has found that trying to keep epilepsy a secret seldom actually works. While the person with epilepsy thinks she has successfully hidden her condition from others, the research found that most people around her know she has epilepsy anyway. We’ll call the person with epilepsy, Rachel.
Lets look at the “secret” from the standpoint of others. They know Rachel has epilepsy. Rachel obviously does not want to talk about it. What conclusions are others supposed to draw from this situation? First, if epilepsy were no big deal, Rachel would talk about it. So obviously, epilepsy must be a big deal. If Rachel doesn’t want to talk about this big deal, it must be embarrassing. Second, that means people with epilepsy must be embarrassed about their condition. So there must be something wrong with having epilepsy. Epilepsy must be bad, and people with epilepsy must be ashamed of their condition. Third, by her silence, Rachel has just succeeded in teaching others around her that it is socially undesirable to have epilepsy. Rachel has just taught stigma to others without saying a word.