The Social Stigma of Migraine Headaches: Worse Than Epilepsy, According to New Jefferson Study
January 18, 2013
A groundbreaking study led by William B. Young, MD, a neurologist at Thomas Jefferson University Hospital’s Headache Center, shows that patients with migraine (a combination of severe headache, nausea, light sensitivity, and other factors) suffer social stigma from their disease similar to the stigma experienced by patients with epilepsy.
The study, to be released on January 16, 2013 in the online journal PLOS ONE, is one of the first to study the social cost of this frequently debilitating and misunderstood illness. The study was co-authored by Joanna Kempner, PhD, Assistant Professor of Sociology at Rutgers University in New Brunswick, NJ. When published, the article will be available here.
Social stigma occurs when society disapproves of a person because they are different in some way—either externally, as with a birthmark, or in an unseen way, as with migraine. Stigma can hurt people’s personal relationships, their work prospects, and their state of mind.
“When people treat my patients as if they are to blame because they have a severe, debilitating disease, they are contributing to the problem and making life harder for them,” commented Dr. Young.
The authors conclude that the high level of stigma for chronic migraine sufferers is due to the impact of migraine on the study subjects’ work lives: Chronic migraine has a bigger impact on the work of migraine patients than epilepsy has on the work of epilepsy patients. Stigma is worse because the chronic headache patients are more disabled. If you take out disability, the stigma of chronic migraine and epilepsy are about the same and the stigma of episodic migraine is less.
“I don’t think people realize that it is not unusual for people with migraine to have severe headaches every day—to be so disabled that they are unable to work,” said Dr. Young. “This is what causes the stigma—the fact that people with severe migraine may not be able to work.”
Investigators surveyed 123 episodic migraine patients, 123 chronic migraine patients1, and 62 epilepsy patients using a 24-item stigma scale for chronic illness. They used epilepsy for comparison, a disease well-known for the stigma associated with it. Patients were recruited between October 2009 and July 2011 from the Jefferson Headache Center and the Jefferson Comprehensive Epilepsy Center in Philadelphia, PA.
The study showed that patients with chronic migraine had higher scores (54.0+/- 20.2) on the stigma scale than either episodic migraine (41.7 +/-14.8) or epilepsy patients (44.6 +/-16.3) (p<0.001). Adjusted scores put migraine and epilepsy scores roughly equal, with (49.3 vs. 46.5; 95% confidence interval for both). Adjusted scores for episodic migraine were lower (43.7; 95% confidence interval).
Study subjects with chronic migraine reported a greater inability to work than patients with epilepsy. Many required bed rest during the day for hours at a time, many times per month.
The study and treatment of migraine suffers from stigma itself; it is often considered a minor health problem—“just a headache.” Yet in Dr. Young’s clinic alone, 25 percent of migraine patients cannot hold a job due to the disease. Many more suffer severe headaches nearly every day. Severe depression and even suicidal thoughts are common among patients with chronic migraine.
Read more: "Migraine Headache Sufferers Stigmatized."
1. Episodic migraine was defined as 14 headaches per month or fewer. Chronic migraine is greater than 14 headaches per month, with eight of these meeting the criteria for migraine.