The Struggles of Epilepsy Patients and Their Families

Asahi Shimbun Morning Edition, October 17, 1998

It is said that over 1.5 million people in Japan suffer from epilepsy, a neurological disorder that is no longer classified as a psychiatric illness in modern medicine. In the past, however, it was considered a mental illness. Even so, one might wonder why seizures or loss of consciousness were once regarded as psychiatric symptoms.

There used to be a way of thinking that divided mental illness into disorders of consciousness and disorders of personality, and epilepsy was considered the prime example of the former. The fact that a German psychiatrist discovered brain waves and that psychiatry treated epilepsy before neurology became an independent field is also related to this perception.

Today, however, epilepsy is treated mainly in pediatrics, neurology, and neurosurgery, with psychiatry playing a lesser role. Psychiatrists may still become involved when patients experience hallucinations or delusions during seizures, or show extreme irritability or agitation.

Doctors determine treatment—typically medication or, in some cases, neurosurgery—based on clinical seizures and EEG (electroencephalogram) results. However, medication does not always fully control seizures.

For patients who begin taking medication during childhood and may need to continue for life, the psychological burden is immense.

Some patients struggle to accept their condition. They may, out of resistance to medication, run out of the house late at night to drink, or go on hunger strikes with a sense of despair.

A film released last year, originally titled First Do No Harm, was curiously translated in Japan as Misdiagnosis. It portrayed a family overcoming the challenges of intractable epilepsy in their young son. Meryl Streep played a mother who fought tirelessly for her child.

The film was created with the cooperation of patients and a treatment team at Johns Hopkins University, who were using an unapproved dietary therapy. The fact that a top-tier actress participated in a film that sends encouragement to those suffering from epilepsy was noteworthy.

The anguish of families of epilepsy patients is immeasurable. In the film, the distrust toward doctors when treatments prove ineffective was depicted with raw realism. I myself have been criticized as an incompetent doctor more than once. This film reminded me of the very essence of what it means to be a physician.