Bryan Stevenson, a lawyer and founder of the Equal Justice Initiative, which provides legal defense for the poor, the mentally challenged, children and the wrongly condemned has a new book called, "Just Mercy."
Sirven: Recognizing The Stigma Of Disease
Maybe you’ve been diagnosed with a disease and felt ashamed because of it. You wouldn’t be alone. Doctors know the stigma of disease is real problem, and if they’re doing their job right, they think about this when discussing a difficult prognosis with patients. KJZZ commentator Dr. Joseph Sirven explains.
You know that old saying, "sticks and stones may break my bones but words will never harm me." Baloney. In medicine, certain words can be more damaging than the condition itself.
Early on in my career, I diagnosed my first case of new-onset epilepsy, a condition of repeated seizures. I noticed how the young patient and her family winced every time I said “epilepsy,” as though I was cursing. Later, she told me she didn’t hear anything but that ‘word’ the whole time she sat in my office.
With the number of reported cases of epilepsy going up, this problem is becoming more common.
So I was fascinated by a report from the South Korean Medical Society, expunging the word “epilepsy” from the official Korean medical dictionary. The former Korean term for epilepsy translated to momentary demonic possession, suffocating the afflicted with stigma. So now, Korean doctors use the more benign “cerebral electric disorder.”
The Koreans may be onto something. In the United States, tagging patients with "epilepsy” shuns them by setting up legal barriers to employment, education, driving, insurance, and sports. Even The CDC recognizes “stigma” as a public health issue.
However, stigma is neither unique to epilepsy nor new. From infectious scourges like leprosy, plague, and AIDS, to common mental health issues like depression, anxiety and bipolar disease, they all share common bonds enshrouded in needless shame.
When you think about it, what’s the difference between a badly broken bone and any of these conditions? It’s as though we forget that, really, everybody’s got something they’d rather hide.
You see, every physician has to be careful with words. Patients — myself included — pray that our doctors will be great communicators, translating complex information with an open, unhurried ear. Always educating and immunizing their patients with pragmatic hope and empowerment. That’s why I think the phrase “seizure disorder” sounds a whole lot better than the sticks-and-stones that are cast by the word "epilepsy."