Stigma, Revisited 2017

July 10, 2017
Jim Carleton
First, heartfelt congratulations to everyone who participated in the wealth of activities celebrating Migraine and Headache Awareness Month 2017 (MHAM) Thanks to all who worked on and participated in the Shades of Migraine and World Migraine Solidarity Day campaign. If you did not hear about this effort, initiated by the Association of Migraine Disorders, visit www.ShadesForMigraine.org to learn about it. The campaign was run by a coalition of more than 2 dozen organizations and blogs.  Seeing this coalition come together in a matter of weeks was encouraging but not surprising, as we are all on the same "team", working on behalf of millions of migraine sufferers. Across all June's MHAM activities the number of people participating reached new heights.  We hope this vigorous response heralds a continued upswing in our movement and greater recognition of migraine disease.
 
While working on this newsletter, I coincidentally turned and looked at a co-worker who is an insulin dependent diabetic.  She has an illness that can be debilitating, even life threatening. However, we don't attach stigma to Jenn's diabetes. She has a tangible illness. Jenn takes medication to control it. Not so with migraine, especially the chronic version. We treat people who suffer with migraine differently, in some cases with extreme prejudice. Migraine is often described as "the invisible disease" because of the lack of imaging, lab tests, or EEG that may indicate it. As a result, the disability can be viewed with suspicion.
 
How did this stigma begin? Ancient Roman writings of Galen, an early physician/philosopher, are credited with first naming of and describing the illness. The renowned German abbess Hildegard of Bingen (a migraine sufferer herself) recognized that migraine often afflicted one half of the head at a time. She took migraine, and its excruciating pain and aura most seriously indeed. This takes us up through 12th Century. William Dunbar the Scottish poet of the late 1400s immortalized migraine in poetry, describing the phenomena of prodrome and aphasia. 
 
Into the 16th and 17th centuries migraine disease continued to gain acceptability as a bona fide medical condition. Cures and remedies are prolific in the literature of the day. In 1642 Jane Jackson, a well-known writer, gave no less than six recipes for the condition "Migrim in the Head". In addition Jackson proposed migraine existed on a spectrum, with both episodic and chronic versions.  At this point in time it seems that migraine was poised to take its place with other conditions of the day: looking forward to a great leap forward in medical understanding that the Age of Science would drive it through to the 18th and 19th centuries.

 

What happened to derail the legitimacy of migraine illness? During the 1700s migraine became the stuff of sarcasm and unfair characterizations. It was mocked in cartoons and was most often associated with women, in a less than flattering way. This would make women and migraine an easy target since constitutionally 70-80% of migraine sufferers are female, as we now know. During this time migraine evolved into a condition to joke about, and became associated as an illness of some "fashion". By the 19th century migraine became further linked with young female "martyrs". "Sick headache" and migraines became viewed as a disorder of "mothers in the lower classes of life" who were physically and emotionally deteriorated by poor sleep, inadequate diet and "constant lactation". In short, we devised a perfect formula for stigma. And stigma, once established, can be very stubborn to eradicate.

 

Certainly education can help. However, education in itself is not enough to eliminate stigma. Witness epilepsy: an acknowledged neurological disease, yet still a highly stigmatized condition. What causes some illnesses to remain stigmatized in spite of all educational efforts? There are numerous social variables at work here, many unrecognized. It will take a combination of science, education, understanding and empathy to eliminate migraine stigma. The efforts must reach into our homes, schools and workplaces to better accommodate and understand the millions of sufferers.

 

It took us nearly 300 years to cultivate the stigma we now associate with migraine illness. Let's hope it doesn't take another 300 years to rid ourselves of it.