Women with Epilepsy: A Handbook of Health and Treatment Issues (Chapter 23)

The impact of epilepsy on relationships (Excerpt)

Patricia A. Gibson

Dating and establishing sexual relationships

One of the areas of great anxiety for both males and females with epilepsy is that of intimate relationships. The American culture worships physical perfection. These physical ideals have caused untold suffering and shame to many people. Indeed, it was only a few decades ago that laws were changed in the USA that allowed marriages to be annulled if one of the partners was found to have epilepsy. The woman is looked upon as ‘damaged goods,’ which can and should be returned. Fortunately, efforts are underway to change these outmoded views of women, but this change does not occur quickly.

Women experience many fears concerning the formation of intimate and sexual relationships; the worry that sexual partners will not find them attractive, that they will be rejected once the epilepsy is revealed, or that they will have seizures during sex. Rejection does occur on occasion, as it does for many women who do not have epilepsy. A woman with epilepsy needs to be careful not to place too much emphasis on her condition. It is only a small part of who she is. People who run from relationships on the basis of learning about the epilepsy are not really ready for a mature relationship. I once sat beside a man on an overseas airplane trip who, after learning of my work, confided that he had been very attracted to a young woman in high school. On their first date, the young woman had a convulsive seizure. He was frightened, took her home, and never asked her out again. It was never discussed with anyone. ‘That young woman is now a member of Parliament, well thought of by everyone,’ he went on. ‘She has accomplished so much. I was so young and silly. I missed out on getting to know an outstanding person because of my fears,’ he said regretfully.

Not everyone experiences rejection; many women report extraordinary experiences when they confided that they had epilepsy to their boyfriends. ‘When I told him I had epilepsy, he just looked at me with such love and said, “So?” It is the most wonderful feeling to be loved just as you are, epilepsy and all,’ reported one woman from North Carolina.

One of the biggest steps for the woman with epilepsy is to build a good relationship with herself, to become self-accepting. Merle Shain, in her book When Lovers Are Friends, said:

"We are all connected to the world by a thousand hidden strings that we don’t see. There are the strings of other people’s expectations and those we make ourselves out of vanity or fear. And the world is very quick to hang a myth on you which can cover you like a net, and if you aren’t nimble enough to jump clear of it you can spend your life inside."

So it is true of epilepsy and the net that others may try to throw over the woman affected.

Poor self-esteem is rampant in woman today and especially so in women with any chronic health problem. When women lack self-esteem, they are more at risk of becoming involved in unhealthy relationships. In a survey conducted by Dr Paul Schraeder, of the 51 consecutive women with epilepsy referred to a university hospital epilepsy practice in New Jersey, 32% reported sexual abuse as children; 31% were physically abused as children; 34% reported physical abuse as adults by a partner. Over 50% of the women reported physical or sexual abuse in their lifetime, compared to the combined rate reported in a community-based primary health-care setting of 30%. In a recent survey of women with epilepsy by the author, a number of the women reported being sexually promiscuous in their early years due to their concerns that no one would love them. Sex was a means to prove their attractiveness. One woman wrote:

"I don’t remember a lot of my past. I feel like the only things I remember are the bad things that happened to me. My seizures got worse when I was 8 and was molested by a preacher. Later, in high school, I never really dated and I only had a few friends, I had sex but I never liked it. I think I done it because I was looking for acceptance and for someone to love me the way I always wanted to be loved."

This young woman’s early insight helped her pursue counseling and she is now happily married, although continuing to struggle with uncontrolled seizures and poor self-esteem.

-- Excerpted from "Women with Epilepsy: A Handbook for Health and Treatment Issues" edited by Martha J. Morrell, MD and Kerry L. Flynn, M.A. Published by Cambridge University Press, 2003. It is available for purchase in our marketplace.