PHILADELPHIA -- For years, neurologist William Young, of Thomas Jefferson University Hospital's Headache Center, has heard his patients say how bad they felt when other people did not take their migraines seriously.
"Every day, I hear stories of the ignorant or mean-spirited things people say to them about having their disease," he said. "People make it obvious that they think they're morally weak because they're not functioning well because of a mere headache."
He says the federal government has the same attitude when it comes to researching the condition, which affects 12 percent of the adult population and can leave some people in terrible pain more days than not.
So, when an intern asked about a research topic, Young jumped at the chance to study stigma in migraine patients. He and co-author Joanna Kempner, a Rutgers University sociologist, decided to compare migraine to epilepsy, "a poster child for a stigmatized disease," Young said. Epilepsy was once thought to be a sign of possession by the devil.
Through surveys of 146 patients at the Jefferson Headache Center and 62 epilepsy patients at the Jefferson Comprehensive Epilepsy Center, the team found that people with epilepsy and migraines scored similarly on a stigma scale. Migraine patients were especially troubled when symptoms were bad enough to keep them from working.
The researchers say their study is important because stigma not only compounds patients' pain but makes migraine a less attractive research topic. "We believe that stigma has a profound effect on the quality of life," he said.
Young and Kempner suffer migraines -- she is one of his patients -- and want to change the disease's image.
Kempner, who studies the links between medicine and culture, started studying migraine in graduate school. She found it had largely been ignored by doctors and sociologists.
"From my own life, I knew migraine was incredibly debilitating," she said. "I couldn't believe that nobody was paying attention to it."
She has theories as to why. "It's invisible. It's not fatal," she said. "We associate migraine with people who are weak or neurotic or who can't handle the stress of life. And very often we associate migraine with women."
Migraines are far worse than standard headaches. They last for hours and often include nausea plus sensitivity to light and noise. The scalps of some sufferers become so sensitive that wind ruffling their hair hurts.
The head pain tends to be focused and throbbing. Kempner described hers: "My head is pounding. I'm throwing up, and I'm in bed in the dark. It feels like my head is literally splitting in half, and I can't do anything. I'm completely down for the count."