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?