Those who get migraines have to deal not only with the pain, which can be disabling, but the stigma caused by others who tend to discount the impact of the debilitating headaches, a new study shows.
“We were able to validate that people who have migraine are not mistaken that they feel they are stigmatized,” said 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,” he noted.
“The general attitude is that migraine is not a serious or valid condition,” he said. In the study, those with asthma experienced the least amount of stigma of the four conditions studied. Epilepsy patients can experience unpredictable seizures and the condition is known to carry a stigma. Panic attacks, where sufferers experience bouts of intense fear, are also unpredictable.
Shapiro is due to present the findings Sunday at the International Headache Congress in Boston.
About 29.5 million Americans are affected by migraine pain and symptoms, according to the U.S. Department of Health and Human Services. Symptoms can include severe headache, light sensitivity and nausea. Those who are affected may need bed rest and may be unable to work while they are experiencing a migraine.
Shapiro polled 765 people online. All were U.S. residents, with an average age of 28. When presented with vignettes that described people with asthma, migraine, panic attack and epilepsy, the survey participants answered questions on a well-known test used to assess stigma towards illness.
The questionnaire, Shapiro explained, “just provides insight into how someone wants to be associated with someone else.” For instance, respondents told how likely they were to want to work with someone with one of the four conditions, and how comfortable they would be inviting them to a dinner party.
The lowest stigma score was for those with asthma. “What we found was the score for migraine versus epilepsy versus panic attack were quite close together and quite similar,” Shapiro said.
The study was funded by the Canadian Institutes of Health Research. Peter Reiner, of the University of British Columbia, also conducted the research.
Some of Shapiro’s findings echo those from another study, published earlier this year, in which researchers from Thomas Jefferson University Hospital’s Headache Center found that chronic migraine patients experienced more stigma than did those with epilepsy, while those with episodic migraines experienced less stigma than those with chronic migraines.
The latest finding did not surprise Dr. Randall Berliner, a neurologist and psychiatrist specializing in headache disorders at Lenox Hill Hospital in New York City.
“This is a very common problem,” said Berliner, who was not involved in the study.
“If you don’t have migraines yourself, you may have a hard time understanding just how severe the headaches can be,” Berliner explained.
Many people experience non-migraine headaches, he said, and don’t consider them disabling. They may pop a pill and feel better, not missing any work. But migraines are different, he said.
Shapiro agreed. Those who haven’t had a migraine often have the attitude that those with disabling migraines are simply not managing a problem that nearly everyone has, he said.
Migraines are also typically very unpredictable, Berliner added. “It makes 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.”
To combat that attitude at work, Berliner said, an employee with migraine might have a conversation with his boss, communicating that “It’s not my intention to take away your productivity.”
SOURCES: Robert Shapiro, M.D., Ph.D., professor, neurological sciences, University of Vermont College of Medicine, Burlington; Randall Berliner, M.D., neurologist and psychiatrist, headache disorders, Lenox Hill Hospital, New York City; June 30, 2013, presentation, International Headache Congress, Boston; Health Day, MedLine Plus