«I'm 34 years old, with a wife I adore and a beautiful daughter. Yet for years my life was hell. Only now am I beginning to get better».
This is Luigi speaking—a financial administrator, tall, with early baldness, seemingly just another Roman you'd pass on the Metro as it empties thousands of workers each morning from Cinecittà into the city center. But Luigi doesn't feel like the others. He has contemplated suicide, attempted it. He continues in long-term therapy with a psychologist.
The reason? He has epilepsy. No one notices. Unless you watch closely for a barely perceptible tic, a momentary suspension of movement and speech, a fleeting "absence" that comes and goes and escapes the casual observer. Yet since childhood, he has worn the brand of "epileptic"—treated as the family's shame, though he is an entirely ordinary person, gentle and angular, much like anyone else. "For years at the office I wore dark glasses all day long, never taking them off, hoping my colleagues wouldn't notice my absences, those moments when my eyes just go blank," he explains.
A mark, born from centuries of prejudice—when "epileptic" meant "possessed"—and from simple ignorance
Today he is better, and he owes this partly to his work with others—patients and non-patients alike—to found a voluntary association: the Lazio Association for the Fight Against Epilepsy. Medical care must improve, certainly. But it is equally urgent to dismantle the mountain of prejudice that has accumulated over millennia around this disease and those who suffer from it. They are forced to navigate needless difficulties in family, school, work, and everyday relationships. That is precisely what the association aims to do. These difficulties emerge even in the most ordinary moments. "I didn't drink my first coffee until I was 32 years old—at the end of an association board meeting. Someone had told me that caffeine was harmful for epileptics." Of course, it isn't true at all.
A disease that "leaves its mark," then—even though today it can be cured or kept entirely under control in most cases. But the adjective derived from it, "epileptic," remains a brand. Call someone "cardiac" when they have a healthy heart and no one reacts. Say "diabetic" to someone with normal blood sugar and nothing happens. But say "epileptic" to anyone and you provoke immediate resentment.
A person who moves in an agitated or uncontrolled way, who has a "strange" manner, gets immediately marked with that word—a word whose precise meaning most people don't know, and which has lost its medical sense to become almost a casual slur. In short, because of centuries of prejudice (when "epileptic" meant "demon-possessed") and because of today's widespread ignorance, an "handicap" is born. Like the brand burned into an animal's skin to distinguish it from another owner's herd, the word "epileptic" serves to set a person apart from the world of the normal. Those bearing the mark cannot serve in the military (as if every soldier must be a fighter pilot). They cannot get a driver's license (though everyone knows how many truly dangerous illnesses are ignored in medical examinations at driving schools). They cannot be insured against accidents (as if a flowerpot falling from a window discriminates between the healthy and the sick). They risk not finding work, not finishing their education.
The greatest fear then emerges: to hide from others one's current condition or one's past. Their own families are unknowing accomplices, refusing to admit the truth, as if the ancient concept of a "sacred disease"—linked to the unknowable will of the divine—still held sway. The first person to convince is the patient himself, incapable alone of crossing the invisible barrier that surrounds him, especially since his own family has often built a protective shell around him that is comfortable to remain inside.
It is a mark that cuts you off from the world of the normal
This false "handicap" can be overcome. There is no need to cite historical examples—Iulius Caesar, Dostoevsky the writer. Both sick and formerly sick people have reached and maintained positions of prominence or absolute normalcy in society, though often by hiding their condition.
The prejudices to overcome—for that is all they are—and the bureaucratic and legislative obstacles to tear down are numerous. Yet the goal is not impossible. The results since the first Regional Association for the Fight Against Epilepsy was founded in Italy just over ten years ago—in Lombardy—prove it. As has been said many times: we must help patients first, then everyone else, understand that "being epileptic is simply another way of being normal."
- by Giuseppe Cultrera, President of the Lazio Association for the Fight Against Epilepsy, 1985