The Emotional Effects of Epilepsy

by Amy Crane, Rejoice in the Light

A Woman's Journey out of the Mystery of Epilepsy

Fears and anxieties are common in virtually every one's life. But for those who have epilepsy, fears and anxieties are usually much deeper than those of the average person. Often the emotional effects that epilepsy has on patients go unknown as those with epilepsy grow up with psychological difficulties that usually last for years. It is my hope to shed some light on this topic to those who know someone with epilepsy.

I spent approximately twenty-two years of my life experiencing psychomotor seizures and occasionally grand mal seizures. Fortunately, my epilepsy was cured as the result of my having brain surgery on June 17th, 1994. Although I no longer have seizures, the emotional difficulties that I encountered as a result of having epilepsy are still vivid in my mind.

At the age of eight, I joined a little league girls' softball team. One hot summer evening as I stood in the outfield waiting for the pitcher to throw the ball, I felt a heat rush go through my body. As I felt that so familiar sensation, my mind gripped with fear as I repeated to myself, 'No, it isn't going to happen. . . . No, not here.' But in seconds, my ball glove was weightless and I could not see anything around me. A seizure had taken full course.

The anxiety that I experienced that day on the ball field as I felt a seizure begin is only a sample of the emotional turmoil that some of the two million Americans experience each time they feel an aura begin. An aura is a sensation in the mind and body that some people with epilepsy experience just before a seizure begins. An aura functions as a warning signal to the patient that a seizure is about to occur. Not all people with epilepsy have auras. But for those who do have auras, there is often the thought of losing control of one's life. Sometimes the patient has a brief fear of death as the aura intensifies.

The fear of death along with the physical anxiety of going into a seizure often leads to significant emotional struggles. A person with epilepsy is prone to carrying fear through every day of his life. This form of fear deals with the fear of having a seizure in front of strangers or acquaintances that might not be aware of their epilepsy. When I had a seizure in public, I often noticed afterwards that people were staring at me with looks of uncertainty about my condition. Those looks often reminded me how epilepsy is not understood in the general society. As I attempted to mentally reconnect with my surroundings, I tried to avoid looking at strangers who might have that expression of 'what happened to you?' My seeing their glaring looks would only cause me to go through more psychological difficulties. I didn't want focus on the fact that 'no one understands what I am going through.'

Although only those who have epilepsy truly know and understand how having seizures affects one's emotional state, there are some principles that others can follow to help patients cope better with their epilepsy. To begin with, you may have noticed that I use the phrase 'people with epilepsy' instead of saying 'epileptic.' The term epileptic tends to have a negative connotation attached to it. Many of the people who I have met who have epilepsy have mentioned that they do not like being called epileptic. To the person with epilepsy, being called 'epileptic' sounds as though epilepsy is the person's entire being. 'Epileptic' sounds like a medical label. But to say, 'she has epilepsy' sounds more tactful. The key point to remember is to refer to the disorder without giving the person a label.

Parents of children with epilepsy have a special role in helping their child live a happy and productive life. Although many parents consider themselves as having a loving nature and being knowledgeable in their child's needs, the emotional needs of a child with seizures are often ignored. To reduce the risk of your child carrying significant emotional burdens throughout his lifetime, here are some factors to consider:

1. Have a listening ear. Even though you can't take your child's epilepsy away, you can listen and encourage your child to talk to you about his epilepsy and any fears that he may have about his seizures.

2. Counseling: If your child appears quiet and withdrawn the majority of the time, consider taking him to professional or Christian counseling. Some patients with seizures are not comfortable talking about their fears and anxieties with a close loved one or friend. Don't take their lack of willingness to talk personally.

3. Security: As with any human being, having emotional and physical security are basic needs in order to live a healthy and productive life. But it is even more crucial for a person who has epilepsy to feel loved by his family and secure with his environment. Many people with epilepsy go through significant insecurities as a result of having seizures. A person who experiences these insecurities often searches in other areas of life to find security. These areas include (but are not limited to): a loving family, supportive friends, adequate food and shelter, and positive leisure and social opportunities. Without security in these areas, the emotional effects of epilepsy are multiplied.

4. Opportunities for Socializing: Some people with epilepsy have limited opportunities to socialize with others outside of their household. This is due to the fact that some peoples' seizures are so severe and/or frequent that it is difficult for them to get out of the house. In addition, many adults with epilepsy do not drive, and therefore, have to rely on others for transportation. Those who know someone with epilepsy should invite the patient to social gatherings and outings as much as possible. This will let the person know that you care about him, and he will have opportunities for socializing on a regular basis. Keep in mind that a person with seizures is less likely to experience depression if he has opportunities to socialize and doesn't feel isolated from society.

5. Extra-curricular Activities: Encourage the patient to get involved in a sport or a hobby. Again, a person with epilepsy is less likely to become depressed if he is interacting with others and feeling productive. Use your judgment in suggesting a particular activity or hobby, but know that there are some safe sports and hobbies for people epilepsy to participate in.

6. Take Epilepsy Seriously: One of the most degrading circumstances that can happen to a person with epilepsy is for them to hear another person making light of epilepsy. Most people with seizures despise hearing critical remarks about seizures. Epilepsy is a medical condition that no one asks for and is perceived as a very personal and serious disorder by the patient. People with epilepsy will cope better with their seizures if they hear words of concern and curiosity instead of words that reflect a lack of respect toward those who have seizures.

7. The Patient is a Real Person: Remember that a person with epilepsy is just as much a human being as any one else. In addition to having basic needs, he is a person with potential, desires, goals, and common imperfections. Treat him as an equal, not a lesser person.

© 2001  Amy Crane

Amy Crane is the author of Rejoice in the Light: A Woman's Journey out of the Mystery of Epilepsy. Visit the author's web site at http://www.epilepsycured.org.