EPILEPSY AS A PSYCHO-SOCIAL DISEASE: HOW COMMON ARE PSYCHO-SOCIAL PROBLEMS? GUIDANCE AND COUNSELING

Guidance and counseling, commonly used as synonymous terms, have somewhat different connotations to us. Guidance is something one person provides to another. It implies, to us at least, something actively given and passively received. Counseling, on the other hand, implies something done together and requires active participation by both parties. We believe this distinction is important.
Physicians often speak of patients as compliant or non-compliant, meaning they have or haven’t followed their instructions. Implied in the word compliant is a sense of submissiveness. We often assume that a person with seizures should do exactly what we tell them to. We forget that it is the patient who experiences the seizures, who is encumbered by the stigma of epilepsy, and who may experience side effects from medication we prescribe. We forget that the disorder is the patient’s and, therefore, that the patient must ultimately exercise his own control. However, in a more positive sense, compliance is not submissiveness but reflects a partnership in which the patient agrees with a therapy we recommend and will follow it.
If the patient or, in the case of young children, the family is to exercise the control, then they must be educated to become active partners in the decision-making processes. They must be informed about their condition or their child’s condition and about the likely future. The patient— or the parents of a young child—must assume the responsibility for that future. They must determine their own goals and aspirations. Some use terms like “owning your own disease” or “empowering the consumer.”
We prefer to talk in terms of a partnership and counseling. Then the physician and his team are in the more appropriate position of teachers, counselors, and supporters on this road to seizure control and to medical as well as psycho-social well-being.
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