The link between migraine and stress is unclear, but some people think stress is a trigger. Migraine is associated with depression, anxiety and other pain syndromes. People who have migraine with aura, or visual disturbances, are at higher risk for strokes.
One to 2 percent of the population has chronic migraine, defined as more than 14 headaches a month including eight migraines. Young said more than 45 percent of his clinic's chronic patients cannot hold a job. "I have patients who will not have had a headache-free minute in decades," he said.
This spectrum of pain and frequency may be part of the image problem. Many of us know people who function quite well with occasional migraines. That makes it harder to sympathize with those who create more inconvenience for their friends, family and co-workers.
Young gets a migraine about once a week. Kempner would not say how often she suffers. Citing the stigma, she said, "I don't even want to talk about why I don't want to talk about it."
Young said medications work for most patients, but many cannot find effective treatment. Stephen Silberstein, who directs the Jefferson Headache Center, said doctors don't know what causes the symptoms but that migraine patients have abnormal electrical and chemical brain activity.
A study by the World Health Organization equated the degree of disability from severe migraines to that from dementia and quadriplegia, he noted.
Young and Kempner's study, published in the journal Plos One, found that people with chronic migraine felt more stigma than those who had symptoms less often. The chronic sufferers also scored particularly high on "internalized" stigma as opposed to "enacted" stigma. The latter measures overt behavior by others toward the patient. The other shows how much patients believe others think ill of them.
That raises an obvious question. Isn't it possible for patients to think they are being stigmatized when they are not? Kempner says internalized stigma is a legitimate measure of cultural norms.
"Our feelings of discrimination, our feelings of shame, come from a broad set of cultural messages," she said. Those messages explain why migraine sufferers hide their pain or feel bad about their inability to work and care for their families.Megan Oltman, 53, one of Young's patients, said she gave up work in a high-powered law firm because of migraines and had sometimes found it hard to practice law even part time. She sometimes faced "intense questioning" from clients, adversaries and court clerks when symptoms kept her from a court date. She said even people with less severe migraines were not always sympathetic.
She, too, says she thinks her internal feelings are as important as overt discrimination. "Worrying about people thinking ill of you has an effect, just as having people actually thinking ill of you has an effect," she said.Like Young and Kempner, Teri Robert, a migraine patient and advocate in Washington, W.Va., says patients and doctors need to do better lobbying for more money and respect. One step she takes is calling her symptoms a "migraine attack" instead of a headache.
Juanita Brown, 43, whose migraines are so intense she has applied for disability, said she had to educate her minister after he sermonized about the need for miracles for something horrible and incurable, like cancer, but then added, "I'm not talking about migraine headaches."
Brown, who said her migraines feel like someone is trying to poke her eyes out from inside her head, finally told him how she felt. "You don't know what I go through," she said, her voice shaking. "I need a miracle."