As a licensed clinical social worker, putting into words my feelings about working with patients with seizure disorders has seemed like an insurmountable task. How do I write about my feelings and experiences, and about the rewards of working so closely with such a unique and special group of people? I suppose by starting at the very beginning.

Several years ago my first patient with intractable seizures was referred to me. The referral was made so that I could provide him support for his nonmedical problems. I had prepared for this moment by reviewing pertinent articles and undergoing specialized formal training. I learned about many of the psychosocial issues related to epilepsy, including the restrictions on driving and the problems with unemployment, societal discrimination, memory and cognitive difficulties, mood swings, and medication side effects. But what I didn’t know was what it was really like to live with a seizure disorder. I was about to find out.

When my first patient arrived I could feel my heart racing. I had trouble conducting a comprehensive evaluation because I was too focused on his gestures, movements, and breathing. I feared that at any moment he was going to have a seizure. This threat was almost palpable to me and heightened my anxiety and, I suspect, my patient’s anxiety as well. Getting to know who this person was, what he wanted, and what he needed was masked by pervasive threat. He then proceeded to tell me the indignity that he felt when this threat became a reality.

My patient’s openness provided me with my first real insight into living with a seizure disorder. I found myself fascinated by his courage. We all need to learn how to cope with the uncertainties of life, but rarely is this uncertainly with us each and every day from the moment we awake. It is for people with epilepsy.

With the support of many wonderful colleagues and special patients, I have gained confidence and knowledge of the medical and personal implications of living with a seizure disorder. More important, I have developed tremendous respect for my patients’ abilities to persevere and cope with and conquer many obstacles.

My initial goal in working with patients is to help them become more comfortable with the daily threat of having a seizure. Only then can they begin to move toward self-awareness and self-identity. Inherent in this goal is the establishment of trust. Meaningful relationships are based on trust. This is often a difficult task in a society that still clings to the mystique of epilepsy. Education has helped to destroy some of the antiquated myths and beliefs, but we have a long way to go. Therefore, perseverance holds a special meaning for these patients because they must still contend with societal myths and prejudices.

Patients need to learn when it feels right for them to disclose their epilepsy in a social or employment setting; to take advantage of, rather than to resent the need for, accommodations at work; to use memory aids; and to be mindful of possible harmful situations. They also need to believe that a suitable workplace is one that provides satisfaction not just for the employer, but also for the employee. They need to allow themselves to explore their own strengths, talents, hopes and dreams in a comfortable, safe, and productive environment.

What began as a difficult task for me has actually proved to be a therapeutic experience. Many years and hundreds of patients later, I continue to be rewarded. My early fascination with the courage of patients with epilepsy has grown into deep admiration, which has stimulated me to extend my work into the community and to help develop community programs and support groups.

I continue to work with individuals and families and I have seen the achievements and contributions of many wonderful human beings-mothers, fathers, brothers, sisters, professionals, students, workers, and employers.

And oh, yes, most of these people have epilepsy, too.

The Brainstorms Healer: Epilepsy In Our Experience edited by Steven C. Schachter, M.D. and A. James Rowan, M.D., Raven Press, 1998, Lippincott Williams & Wilkins