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Migraine Activism: How Do We Make People Care About Migraine?

“Yoda is wrong. There is only try.” I posted this on my personal Facebook page with a link to my Migraine.com piece in the hope that some of my Star Wars-obsessed friends would be intrigued enough to read the post. I want people to understand that not everyone is healthy and limited by their own perceptions. That for some people, including me, a person most of my Facebook friends care about, trying really is all there is.

The next, unrelated status update in my Facebook feed read, “Are you avoiding talking about race because it makes you uncomfortable or because you just don’t care?” “Huh,” I thought, “I don’t talk about race because I don’t have the mental or emotional energy to do so.” Because I don’t face racism on a day-to-day basis and instead spend my life trying to manage a debilitating chronic illness, the topic doesn’t come up for me much. On the rare occasion I’m having an intellectual debate, race may be mentioned, but it isn’t part of my daily life (nor are intellectual debates these days).

Answered in the frame of my friend’s binary question, I don’t talk about race because I just don’t care. That is so not true.

Everyone has a “cause” they want other people care about, whether it is race, homophobia, autism, or migraine. Yet, every “target” of a movement or campaign has a finite amount of energy and attention. We care most about what has the greatest impact on our own lives. This isn’t selfish or uncompassionate, but a matter of allotting our limited resources to cope with this incredibly difficult task called life.

I want nothing more than for people to understand how severe migraine can be and the emotional and physical toll it can take. I want this not only for patients and their loved ones, but for society as a whole. My friend probably has similarly ambitious desires related to race. Yet, instead of energizing me to action, her comment left me feeling guilty because my daily struggle keeps me from pursing other important problems.

We can’t guilt people into action, nor can we force other people to take up the fight for an issue that doesn’t impact their daily lives. How, then, do we get non-migraineurs to care? This is an issue I discussed many times at the American Headache Society symposium in November and every conversation raised more questions than solutions. I’m working on a list of ideas, which I will share soon.

In the meantime, I want to hear from you: What do you do to help non-migrainuers understand the potential severity and debility of this illness? What other things could be done, whether by you, patients and their families, advocates, or headache specialists? How do we make people care about migraine?

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You (Yeah, YOU!) Are an Advocate for Migraine Patients

“How do you create awareness about migraine disease and headache disorders as a regular patient with a life full of other obligations?” was the question for the May 2012 Headache & Migraine Disease Blog Carnival. Though I didn’t get a post written in time to be included in the carnival, I have been mulling the question over. I was surprised to discover myself coming back to a very simple answer: talk about migraine.

Advocating for folks with migraine doesn’t require a fancy degree, having a blog, or devoting tons of time to the cause. All it takes is for people with migraine — and those who love us — to speak up about what migraine really is whenever the opportunity arises. This means not dismissing a migraine as “no big deal” and not shrugging off when someone says migraine is “just a headache,” but explaining that this is a neurological disorder that affects the entire body.

Explaining that the autonomic nervous system — which is responsible for all the processes the body does without obvious input from the brain, like breathing and digestion — goes haywire and that all five senses are on super-high alert are illustrative for non-migraineurs. The list of little-known migraine symptoms and weird migraine symptoms help, too.

How do you talk about migraine to raise awareness of the disease?

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An MD’s Suggestions for Effective Advocacy

Dr. Christina Peterson, headache specialist and founder of HEADQuarters Migraine Management and Migraine Survival, commented on the Effective Advocates post with great advice for all of us:

There is no excuse for doctors or other health care providers to be jerks. However, please be aware that under current HIPAA laws we are somewhat restricted regarding how much information we are allowed to release to anyone who is not the patient without the patient’s written permission. If you are in the room, obviously there is a level of implied consent–unless there is reason to suspect an abusive relationship, which we are also obligated by law to report. And…between 1/5 to 1/3 of women reporting to Emergency Departments have been victims of some sort of sexual or domestic violence or abuse. So–it becomes complicated.

In today’s deteriorating health care environment, the Emergency Department has become something of a war zone, inundated by trauma victims. And with the general lack of awareness and poor attitude regarding the headache sufferer, we tend to fare poorly in the Emergency Department and are treated, at best, as a nuisance, and more often, as a drug seeker. This is why I try to give my patients the tools they need to manage their headaches on their own without resorting to Emergency Department treatment unless they have become dehydrated and require IV hydration.

If you do go to an ER, take an advocate who can remain calm but persistent, while keeping these points in mind–and someone who can educate regarding headache/migraine wouldn’t hurt!

Another point: if you think you might be too impaired to call your physician’s office during a headache, and you are going to want a family member to call on your behalf, please sign a consent form for that person to talk to the physician when you are in the office. We really are not trying to be difficult about this–it’s federal law intended to protect your confidentiality.

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Informed Patients Take Charge

Savvy patients arrive at their doctors’ offices, printouts in hand and ideas about treatment in mind. Whether they want to try a new therapy they’ve read about, question their diagnoses or avoid a drug because of its side effects, these patients have ruffled some feathers in the medical establishment.

In today’s Washington Post, Marc Siegel, an internist and associate professor of medicine, describes his transition from being “a card-carrying member of the group of doctors who resent know-it-all patients” to having “an appreciation for patients who inform themselves.”

According to Siegel, instead of being in charge, “a physician is most effective when he or she isn’t defensive, but acts as an interpreter of information and guide of treatment, leaving the ultimate control to the patient.”

In support of a cooperative relationship between patient and doctor, the article examines the benefits that self-informed patients enjoy. Like higher satisfaction with treatment and, as several studies indicate, better outcomes.

Just what we wanted to hear!