Epilepsy affects a person’s self-image. Lack of confidence, depression, or fear of having a seizure may lead to social isolation. This can cause problems in personal relations and in coping with the daily stresses of the world.
Difficulty finding work may force well qualified people with epilepsy to take jobs for which they are over-qualified. Known as “under employment”, this can add to the feeling that they are not as good as their colleagues.
Women with epilepsy can be told, incorrectly, by doctors that they should not have children. This can make them reluctant to seek a relationship that may lead to marriage. Epilepsy affects all aspects of marriage. When diagnosed with epilepsy as an adult, a spouse may have to change his or her role in the marriage. Some people fear that normal sexual activity will bring on a seizure and this important part of the relationship may suffer. Some fear that the afflicted spouse will die during a seizure.
Once both marriage partners learn about epilepsy, get help to cope with changes, and have time to adjust, relations usually strengthen. As with families, a marriage that was previously troubled may fall apart when the crisis of the diagnosis presents itself. A stable relationship based on open communication and sharing will usually survive the diagnosis.
No one plans on having a child with epilepsy. Short of breaking up the family, the diagnosis of a child with epilepsy can strain marital relations. It can also influence the couple’s plans to have more children. Both parents need to be involved in the child’s care. Even though one parent may take the child to doctor’s appointments or stay with the child during hospitalisations, both parents should be included in discussions with the doctor and be educated about the child’s condition.
When a parent has epilepsy, the children may face problems. They may feel a need to take on responsibilities far beyond those normally expected of children. Seizures can frighten them, especially if the parents do not take the time to explain what is happening. Any child’s greatest fear is the loss of a parent. Children of a parent with epilepsy may worry that the parent will die during a seizure. If the parent is hospitalised, the children may think the parent will not come home. It is important for a hospitalised parent to keep in contact with the children, either by having them visit or by telephone. Children also fear that they will develop seizures. As they get older they may be embarrassed by the parent’s seizures and not want to bring friends home. When a parent fails to adequately explain the condition to the children, they may think the parent’s epilepsy is “bad” and become ashamed of the parent. This can affect their self–image, confidence and social interactions.
Children need a simple, honest explanation about seizures and epilepsy. They should not be expected to take on adults responsibilities.
Brothers and sisters of a child with epilepsy need special consideration. If the child’s seizures are severe, frequent, or difficult to treat, much time and attention will be given to him or her. Vacation plans and social activities may be restricted. Discipline should be fair and equal for all children. Some parents do not provide the same discipline for the child with epilepsy as they do for other siblings. This can lead to feelings of neglect and resentment. Their sibling’ anger may result in difficult or attention seeking behaviour either at home or at school. It is important that the children individually receive time and attention from the parents. Brothers and sisters should not be expected to take care of the child with epilepsy at the expense of their social life or after school activities. If family activities are restricted, the siblings should at least be given the opportunity to choose some of the activities in which the family participates.
Original – Courtesy of Epilepsy Association of Scotland: Revised by EASA April 2002