More Than Just A Headache: Battling Migraine Stigma
Nearly 30 million Americans suffer from migraines, a condition characterized by crushing pain, frequently on one side of the head, that is often coupled with nausea and vomiting, sensitivity to light and sound, and sometimes even visual disturbances (known as aura). A single attack can take anywhere from six to 48 hours to run its course. This very specific type of headache often runs in families and is typically brought on by a variety of “triggers,” which may include physical or emotional stress, changes in sleep patterns, certain odors and bright lights, among many others.
But for a neurological condition as common as migraines, many people still doubt that it's a real condition. One recent study found that people with chronic migraines report feeling more rejected and ridiculed by friends, employers and even family members than patients with other types of neurological troubles, such as stroke, Parkinson’s or Lou Gehrig’s disease. “The stigma can reach deep into migraineurs' personal lives,” reported "U.S. News & World Report" when the study first came out. “Many people with migraine experienced ‘separation, exclusion and rejection in their relationships with family and friends when their condition prevented them from fully engaging in family and social events,’ the study found.”
In fact, the stigma is so widespread that some medical experts weren’t even surprised by the study, which was the first to look at how people with migraines are perceived by others.
“It was so obvious to me that I didn’t make special note of the paper,” says Jason Rosenberg, M.D., assistant professor of neurology at John Hopkins Medicine and director of The Johns Hopkins Headache Center. “I see it from husbands and wives who roll their eyes at their spouse for saying they have headaches to employers not recognizing it as an illness.”
So what’s the problem? One explanation, Rosenberg says, may be that the medical profession historically looked at migraines as attacking a certain “type” of person -- the overachieving, oversensitive petite woman. “It’s often thought of as a weakness of character as opposed to a biological disease,” he says. And even though we now know that there’s no link between personality traits and migraine, it’s become a “viral meme,” as Rosenberg puts it.
And one reason we as a culture may have not been able to get beyond that misunderstanding is that, like a lot of chronic pain conditions, there’s no proof that migraines exist in the form of visible symptoms or a verifiable diagnostic test. “It’s not like the person is wheezing or there’s a blood sugar test that can come high,” he says. “Most diseases that people would see as quote, unquote ‘legitimate’ have a test or a scan.” And that can lead employers or peers to see the condition as more of a convenient excuse than a legitimate condition -- especially since so many people (approximately 90 percent) have experienced a headache and think that’s all a migraine really is.
Another argument explaining the stigma is rooted in feminism -- migraines disproportionately affect women more than men (potentially because of certain hormone changes), and the World Health Organization has even classified the headaches as a leading disability among women. This has lead some to question whether the lack of acceptance of migraines has to do with the fact that there are more women presenting symptoms than men -- author Paula Kamen looked at a feminist approach to migraines in her memoir “All in my Head: An Epic Quest to Cure an Unrelenting, Totally Unreasonable, and Only Slightly Enlightening Headache,” which chronicled her experience with a migraine attack that wouldn’t go away.
For people whose loved ones don’t buy the migraine diagnosis, Rosenberg encourages them to bring that person in to the next appointment. “Hearing it from a physician is enough to sort of clear the air of any sort of suspicion that someone is feigning it or has a psychological condition,” he says. As for employers, he offers to write a note explaining that the person has migraines. Other migraine advocacy and resource groups, such as the Migraine Awareness Group and the American Headache Foundation, have resources that can help to empower patients to share the realities of migraines. “Knowledge is power,” Rosenberg says.
And that knowledge can even be important for the person who is actually suffering from the migraine, as they start to believe that maybe the chronic condition is stemming from their own behavior or personality flaws. “This perception of migraine as some sort of a character weakness is very common,” he says. “Patients themselves will de-legitimize the condition.”
The best way to end the stigma on a more global level would be to find a scan or a test that can prove people have migraines. “It would suddenly legitimize the disease to others,” Rosenberg says. In the meantime, continuing to find new classes of designer drugs for both prevention and treatment can help to legitimize that migraines are a very real and painful condition.
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First Posted: 05/16/11 03:12 AM ET Updated: 07/16/11 06:12 AM ET