Interview with Cindy McCain: Migraine Sufferer, Advocate

by Teri Robert, Lead Expert

"I'm going to put together an action committee to go door-to-door in Congress, particularly the Senate, to make them understand... to make them understand how little research there is, the huge number of people impacted... to make them understand what the economic problems caused by Migraine are too. We need to testify in front of Congress."

"Hi, I'm Cindy," were the words that went with the warm welcome this morning when Nancy and I met with Mrs. Cindy McCain to talk about Migraine disease. With a genuine smile making her eyes sparkle, she set the tone for a conversation that was exhilarating, touching, funny, and real.

If you missed the information leading up to this, Mrs. McCain is delivering the keynote address at the International Headache Congress this after noon in Philadelphia. Mrs. McCain has been dealing with problem Migraines for 15 years now, and she's faced many of the problems that so often seem to follow Migrainuers around like a black cloud.

Mrs. McCain's main Migraine triggers include changes in barometric pressure, odors such as strong fragrances, and disturbed sleep and meal schedules. In addition to her wouldn't-be-caught-dead-without sunglasses, a couple of comfort items she takes with her are ice packs and a gift from a woman in Virginia - a hand-made warming item that she can warm in the microwave and drape around the back of her neck.

As too many Migraineurs are, Mrs. McCain was misdiagnosed at first. She talks about it being "demeaning" when a family practice doctor told her that she had four children, was stressed, and needed to go home and "sleep it off." He told her to "get over it." How many of of have heard that or something similar? She has now found a Migraine and headache specialist to work with toward better Migraine management and an improved quality of life.

She agrees that there's still a stigma attached to having Migraines, especially for women, commenting that men are usually taken more seriously. Another reason for the stigma, she notes, is that too few people understand the huge difference between Migraines and headaches.

In a recent People magazine interview, Mrs. McCain said, "I'm one of the millions. It's time for us to shake things up a bit."3 Of course, I had to ask her if she had anything in particular planned to "shake things up." She certainly does! She told me,

"I'm going to put together an action committee to go door-to-door in Congress, particularly the Senate, to make them understand... to make them understand how little research there is, the huge number of people impacted... to make them understand what the economic problems caused by Migraine are too. We need to testify in front of Congress."

What would she suggest other Migraineurs do to "shake things up?"

"Patients need to help advocate. Get the message out that we're here, and we will help be their voice."

Given that her husband is a veteran and her son is in the military, it's no surprise that Mrs. McCain has a soft spot in her heart for the U.S. military. That so much higher a percentage of our men and women returning from war in the middle east have Migraine disease than "normal" is unexplained and very disconcerting.

If Mrs. McCain could look a newly diagnosed Migraineur in the eye and offer some advice, she'd say,

"I'm sorry. We're here for you. Find a doctor who will listen and talk to you. You do have a significant disease.

The last question I asked Mrs. McCain was what she would like to tell you, our readers. She replied,

"Make sure they understand this is just the beginning. It isn't one shot or one speech. I'm in this for the long haul. I'm in this to help raise awareness, increase research funding, and eventually, one day, find a cure."

Dr. David Dodick, President Elect of the American Headache Society, commented:

"Mrs. McCain is a woman of such credibility and grace... This is an opportunity not seen before... the most substantial single thing in this field in 20 years."

Comments and summary:

While I'd never wish Migraine disease on another person, I've long hoped that someone with high public visibility would come forward, tell people they have Migraine disease, and help put a face to it. This has helped with other diseases. Certainly, my experience with Mrs. McCain leaves me feeling that, if anyone can do it, she can. It also leaves me with strengthened hope for better treatments and, perhaps, an eventual cure.

Thank you, Mrs. McCain. Your time and your efforts, so graciously give, are definitely appreciated.


Resources:

1 Interview with Mrs. Cindy McCain. Teri Robert. September 10, 2009.

2 Interview with Dr. David Dodick (President Elect, American Headache Society). Teri Robert. September 10, 2009.

3 People.com. "Cindy McCain's secret struggle with migraines." Today on MSNBC.com. September 2, 2009.

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© Teri Robert, 2009. Last updated September 10, 2009.