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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.

7 Responses to Migraine Stigma: The Paris Review’s Infuriating Contribution

  1. John Ptacek says:

    Pithy writing is not the same as intelligence. Paris Review. Whatever. You gotta have heart. I agree with your analysis.

  2. caroline says:

    They don’t allow comments, which I suppose will spare the author much spleen and venom. I will try to remember to feel the glamor next time I’m crying wth pain for three days.

  3. Parin Stormlaughter says:

    The woman didn’t even properly sum up her article at the end. The article simply stops. Sounds to me like she had a deadline, slung something together, and never though more about it.

    She did us a disservice. It would be interesting to discuss this article with her but she wouldn’t talk to me I don’t imagine. I do get tension-type HA and cluster HA. She’s just walk away jealous, if she’s to be believed.

  4. Ellen G says:

    I guess everyone’s pain is relative and sometimes it is hard not to second guess myself as to if my migraine is really as bad as it seems to be for others who have it. All I know is that I detest being nonfunctional when they’re bad, and grateful for the patience I get from my family when they are. There is so much to do and enjoy in life. Languishing or wallowing in the pity I might get from others is not one of them.

  5. Ellen G says:

    This article in the Paris Review is old, November 21, 2014. Also feels like a fluff filler piece. Total junk.

  6. Misty says:

    Hello Kerrie, first time reader, first time commenter. I love your blog.
    My lifetime of migraine attacks went daily nearly two years ago. I appreciate your ability to think kind thoughts at this writer. I would want to verbally eviscerate her if my spoons could stand the energy output.

  7. Robbie says:

    Migraines are painful to have, I feel like throwing everything whatever is in front of me. I work late night which I believe is not a good routine work.This is maybe the cause of migraine, not having proper sleep and time to relax,taking stress,pressure and tension is pretty much destroying me.
    I’m in NYC, went to diverse practices and yet the best one I found is Island Neuro Care in Massapequa. They have the best neurologist (https://islandneurocare.com/index.php) in New York. They provided me the prescriptions which I’m following and its quite helpful.

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