Migraine Sufferers Must Cope with Stigma and Scoffing, Says New Study
Agonizing headaches that some compare to the pounding of a hammer, dizziness, sensitivity to light and noise, and nausea: These symptoms typify the misery of a migraine. Making it worse: The feeling that other people don't understand or discount the pain. Now a new study confirms that migraine stigma is real.
"We were able to validate that people who have migraine are not mistaken that they feel they are stigmatized," noted lead researcher Dr. Robert Shapiro, a professor of neurological sciences at the University of Vermont College of Medicine. "We have found those perceptions are well-grounded, and that the stigma that people with migraine experience is of a similar magnitude to the stigma people with epilepsy and panic attack experience." Even friends and family members may take the attitude that "migraine is not a serious or valid condition," commented Dr. Shapiro. He will present his findings on June 30 at the International Headache Congress in Boston.
With approximately 29.5 million Americans impacted by migraines, the symptoms are well-documented, according to the U.S. Department of Health and Human Services. Because the reaction to a migraine can include debilitating nausea, agonizing headaches and severe sensitivity to light, sufferers may need bed rest and consequently have to take time off from work. And given the fact that migraines are typically discounted, the impact on their careers can add to the stress that accompanies this disease.
To conduct his study, Dr. Shaprio polled 765 people online. The participants responded to scenarios describing individuals with migraines, panic attack, asthma and epilepsy. Included in the questions: How apt the person was to desire to work with someone with one of those conditions. The lowest stigma score was asthma, with "the score for migraine versus epilepsy versus panic attack quite close together and quite similar."
What to Consider to Get Support
So how can you develop a support system at home, at work and among your friends, and help yourself feel better emotionally about your situation? Dr. Randall Berliner, a neurologist and psychiatrist specializing in headache disorders at Lenox Hill Hospital in New York City, emphasizes that "this is a very common problem. People who don't have migraines "may have a hard time understanding just how severe the headaches can be." As a result, those who have migraines have difficulty explaining the severity to someone who can just "pop a pill and feel better, not missing any work." Those individuals may think that migraine sufferers are not able to manage their problem in the same way, and not understand or sympathize. Adding to the problem: Migraines are unpredictable, making it "hard for a migraine sufferer to make plans and keep them," he said. "Some people may interpret that as flakiness or lack of consideration." At work, talk with your manager, emphasizing that you do not want to detract from the productivity level of the department.
As for friends and relatives, seek ways to explain your pain and your limitations. By being honest and detailed in your description of your migraine, you may be better able to get the support that you need and deserve. The stigma of having migraine headaches that comes from people who don't understand can make it even more difficult to cope.