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

Quality of life issues for women with epilepsy (Excerpt)

Joyce A. Cramer

What is ‘quality of life’?

Health-related quality of life (HRQOL) has been defined by the World Health Organization as a state of complete physical, mental, and social well-being, and not merely the absence of disease or infirmity. It can also be defined as the functional effect of an illness and its consequent therapy on a patient, as perceived by the patient. Within the many aspects of HRQOL, an individual person perceives a problem when there is a difference between actual and desired health status. When the gap between where we are compared to where we would like to be is wide, HRQOL is low. A woman whose epilepsy is poorly controlled, but who can maintain her home and care for her family, or enjoy a successful career, may be pleased with her life. In contrast, a child restricted from playing sports may feel like a social outcast; a teenager whose occasional seizures cause embarrassment at school and lead to a loss of friends may feel severely limited by epilepsy.

The medical profession has only recently moved toward appreciating that HRQOL is an important component in assessing the effectiveness of health care. This is particularly welcome at a time when women are becoming more aware of the options available for good medical care. The popular self-help book Men are from Mars, Women are from Venus describes how men and women find communicating with one another so difficult that it is as if they are from different planets. Perhaps the title should also include ‘And Doctors are from the Moon’ to describe the way some health-care professionals view patient needs. This description is not a negative statement, but one that reflects the different ways that each group listens, perceives, and communicates about issues. The hallmark of HRQOL assessment is that it must reflect what the individual patient feels, and needs, not what the health-care provider thinks are the problems.

Why is epilepsy different?

Epilepsy is a condition with long periods of normal function interrupted occasionally by brief periods of seizure activity. People with epilepsy, even if they have not had a seizure for several years, carry the diagnosis without obvious signs or symptoms. Unlike people who have arthritis with daily pain, seizures can occur rarely. Unlike people with so-called ‘silent disorders,’ such as hypertension, people who are diagnosed with epilepsy have already experienced two or more seizures. They know the physical, psychological, and social impact of seizures, and cannot be guaranteed that seizure activity will not recur, even while they are in a current period of remission. These concerns underlie many of the perceived limitations related to epilepsy. Stopping seizures and discontinuing medications relieve some of the burden of being labeled as an epilepsy patient. However, some aspects of distress continue (such as fear of recurrence) long after the seizures.

-- 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.