Stigma Makes It Harder to Live with Migraines

January 3rd, 2011 - Posted by Teri Robert

If you have Migraines, you’ve almost certainly encountered the stigma associated with Migraine disease…

the misconception that a Migraine is “just a headache,” and we should be able to pop a couple of Tylenol or Excedrin and “get over it.”
people who have the attitude that Migraines are “all in our heads,” and we’re just “high-strung” people who need to see a psychiatrist.
the sighs and eye rolling we encounter from people who have never experienced a Migraine.
the assumption that Migraineurs can’t handle stress, so we couldn’t possibly handle a job with much responsibility.

Well, you know the drill. To me, it brings to mind the old saying about adding insult to injury. I’ve often wished for a big band-aid to slap across my forehead when I have a Migraine – one that says “Migraine is a DISEASE!”

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When I’ve mentioned the stigma of Migraine to people who don’t have Migraines, the responses have been mixed. Some have been surprised; others have made comments about people with Migraine needing to stop worrying about what other people think. Until recently, there wasn’t much in the way of anything concrete to share about the stigma and how it affects us. But, in June (2010), a group of researchers from the Jefferson Headache Center in Philadelphia, presented a research poster at the American Headache Society’s annual scientific meeting.

The purpose of the study on which the poster was based was “To characterize stigma in patients with chronic and episodic Migraines¹,” and their results and conclusions go a long way in validating how many Migraineurs feel about the stigma. In this study, participants with chronic Migraine scored significantly higher on the Stigma Scale for Chronic Illness (SSCI) than a mixed panel of patients with other chronic neurologic diseases — stroke, epilepsy, multiple sclerosis, Alzheimer’s, ALS and Parkinson’s disease.

The lead researcher, Dr. J. E. Park, commented:

“You can’t see it, so people don’t understand the condition, and co-workers and employers sometimes think the person is trying to get more time off for something unimportant because they don’t think the pain and suffering is real.”²

The stigma associated with Migraine disease is very real, and it makes it more difficult for us to live with the disease. As Migraineurs, there are a couple of ways we can view this issue:

We can see it as a problem for the medical community to solve through research and public education; or
we can see it as a problem to be addressed by everyone who is impacted by the Migraines and the stigma.

I very strongly believe that the second option is the better choice. It goes back to the old saying, “If you’re not part of the solution, you’re part of the problem.” Each of us can make a difference here by standing up for ourselves and other Migraineurs whenever possible. The best way to fight this stigma is by educating people. Explain some of the basic facts about Migraine disease so them. If you’d like to use them, I’ve written some letters that you can use for this purpose. I keep copies of them with me so I can simply reach into my purse and hand them to people I encounter. To find the letters, just follow the link I’ve provided for more information about Migraine and stigma.

Will you join me in fighting this stigma? Would you like to discuss it? You can leave a comment on this post to join me in a discussion.

For more information on Migraine and stigma, including two podcasts featuring two of the Jefferson Headache Center doctors, as well as letters you can share to educate people about Migraine disease see More About Migraine and Stigma.

Live well,
Teri Robert Signature

Resources: ¹ Park J.E.1; Kempner J.2; Young W.B. “The Stigma of Migraine.” Poster presentation. 52nd annual meeting of the American Headache Society. Los Angeles. June, 2010. ² Holohan, Ellin. “For Migraine Sufferers, Stigma Adds to Burden.” HealthDay News. Bloomberg Businessweek. June 25, 2010.