Migraine Stigma: The Paris Review’s Infuriating Contribution

“Everyone relishes a migraine. They have a literal aura! Migraines foster the sort of pure narcissism that only intense, essentially benign pain can. We sufferers (that’s how it’s described, “migraine sufferer”) feel it is meet and right that the migraine should be dramatized in films like Pi or White Heat; this strengthens the perception that migraines are the hallmark of geniuses, or at least psychopaths.

“[Joan Didion wrote,] ‘My husband also has migraine, which is unfortunate for him but fortunate for me: perhaps nothing so tends to prolong an attack as the accusing eye of someone who has never had a headache.’ I disagree. What migraine sufferer wants to share the limelight? After all, we all know in our hearts that no one in the history of the world has ever experienced basically unserious pain like we have.”

This excerpt from an article called Head Case appeared on the Paris Review’s blog. The first reading left me furious, but I thought I must have misunderstood the post. I read it repeatedly, trying to identify the satirical angle. I sent it to Hart to see if I’d missed something. Because the Paris Review wouldn’t publish something so trivializing of a disease that can be disabling. Right? Wrong!

My first reflections on Head Case overflowed with expletives and name-calling. That’s not my style, so I set the topic aside to revisit. Here’s what I came up with.

Writers write what they know. The writer includes herself among the “sufferers,” so I can only assume she’s writing about herself—that she relishes the attention she gets from migraine, that she thinks her pain is the worst in the world. Instead of owning her feelings, she projects them onto everyone who has migraine. Of she does. It’s far easier to claim everyone with migraine has such nasty thoughts than to admit that you alone are being a jerk.

Some people probably do relish the attention they receive when talking about migraine. Some do engage in one-upmanship (though I’ve only witnessed this on the internet, never in person). But these represent a tiny slice of people who have migraine. Most of us are nothing like this. Most don’t share our stories to get attention or prove our “genius.” We share our stories to show how incredibly difficult this disease can be to live with. We share our stories because so few people understand how disabling migraine can be.

Migraine stigma is so strong that some people, like the writer of the Paris Review post, internalize it. Instead of believing the severity of migraine attacks, they think they are exaggerating or lazy, that they’re making a big deal out of nothing. My personal experience has shown me this all too clearly. In July 2013, I wrote in a Migraine.com article called Internalizing the Stigma of Migraine:

“No matter how much I write about the needs of migraineurs and work to reduce its stigma, that very stigma has insinuated itself into my self-perception. It will continue to haunt me whenever I have a migraine attack until I accept in both my mind and heart that I am not deficient or lazy, but have an illness that is in no way a reflection of my personality, desires, or attitude.”

I wrote those words almost exactly 10 years after migraine rendered me unable to work and eight years after I started this blog. I didn’t apply migraine stigma to anyone else, only to myself—and did so for years after I knew intellectually it wasn’t true. I have finally shed that internalized stigma, but cannot forget how how fervently I once believed it.

After my initial draft of nastiness, I began to pity a person who would publish such hateful things about herself. I’m still angry and find her pitiful, but it is tinged with compassion and sadness. I feel for someone who turns on herself because she has internalized this stigma. I’m sad that so many of us have done just this. But my empathy only goes so far. I cannot forgive someone for furthering that stigma by publishing such vitriol on the website of a revered literary journal.