Migraines, Stigma, and Research

Recently, I've been thinking about stigma. Talking with my patients, I get the sense that most of them feel they get remarkably little respect or understanding from employers, co-workers, family, or friends. Compared to my patients with epilepsy, multiple sclerosis, or Parkinson's, I think my Migraine and headache patients get much less sympathy and understanding. Many of my Migraine patients come to their first visit insisting they have cluster headache -- perhaps because cluster is less stigmatized than Migraine.

Stigma stereotypes the individual with the stigmatized group seen as undesirable and rejectable. Once people label you, they assume this is just the way things are.

Recently, I've learned that there has been a lot of study about stigma. Stigma is something the medical world wants to understand and counter. In the past, people thought epilepsy was a curse; families would hide the fact their kids had seizures, and patients would be mortified if they were witnessed having a seizure (and many still are). AIDS patients were initially very badly stigmatized. The idea is that if you study stigma, you can learn to change it and reduce the extra burden of being stigmatized on people who suffer enough from their illness already.

Nobody has really studied the stigma of Migraine. I just did a search on stigma and Migraine and no study showed up in the medical literature. Zero. Ever. In contrast, so far in 2009, at least 30 papers address stigma in epilepsy! Hundreds of papers have been written about the stigma of epilepsy, and in general persons with epilepsy are less stigmatized than they once were. Remember Migraine causes much more disability than epilepsy around the world. Why hasn't there been any serious work in this area? Is Migraine so stigmatized that even stigma scholars won't touch it?

Bill Young, MD

Vice President, Alliance for Headache Disorders Advocacy

© William B. Young, 2009.

Last updated October 4, 2009.