I’m a sociologist of medicine and for the last 10 years, I’ve been researching and writing about migraine. I’m excited and proud to announce that my first book on migraine, Not Tonight: Migraine and the Politics of Gender and Health, has just been published by the University of Chicago Press. The book is primarily concerned with figuring out why, exactly, people don’t take migraine seriously, even though we know that migraine is incredibly painful, disabling, and prevalent. A lot of my research happened here, on the Internet, reading what you all had to say about your experiences. So thank you! I describe some of what I learned from you in the following book excerpt.
Not Tonight: Migraine and the Politics of Gender and Health
“Visit our message boards any day,” Teri Robert once wrote, “and you’ll find posts from people whose main problem with Migraine care is Attitude—not theirs, but that of some medical professionals, some media, and much of the general public.”21 Having taken up Robert on this rhetorical invitation, I found that she was right. A virtual sign hanging at the entry of an electronic support group for migraine reads “This is a real and painful disease. We do not choose to live this life.” The sign preemptively rebuffs potential attacks against the legitimacy of participants’ symptoms—attacks much like the one that Heather Zanitsch had heard from her family member.
Frustrations voiced online were both big and small, usually stemming from the disconnect between the serious damage that migraine had wrought in participants’ lives and the disrespect with which it was treated in the world. Ellen Schnakenberg, an advocate who has long experienced from chronic migraine, summarized these frustrations in a blog post that appeared on Migraine.com. Called “The Migraineurs Dirty Dozen,” she listed “twelve things not to say to a chronic Migraineur.”22 Her examples included a number of comments that dismiss the severity of migraine, such as “It can’t hurt that bad,” “You can work through it,” and “You don’t look sick,” as well as comments that suggest that migraine is a fabrication of the psyche, for example, “If you could just lower the stress in your life,” “It’s all in your head,” and “Get a hobby, it will take your mind off of it.” She railed against those who would dismiss migraine as a “woman thing” and despaired of the conflation of migraine with headache. You cannot just “take a pill” and get over migraine, she said. Such statements and beliefs diminish migraine, undermining the symptoms that she and her fellow migraineurs experience. If only, she wrote, they could just take a pill or reduce stress and get over it, people with migraine would be happier and healthier people.
Schnakenberg’s post channeled the anxieties of her readership, quickly becoming one of the most popular posts on Migraine.com and attracting over 150 comments and almost two thousand “likes” on Facebook. Most commenters enthusiastically agreed with Schnakenberg, joking that they would be rich if they got a nickel for every time that they heard similar comments. But other stories were more difficult to read. Posters explained how this disjuncture between the cultural logic of migraine and the embodied experience of migraine caused lasting damage in their lives. One after another, commenters told tales of employers, physicians, family members, and friends who diminish migraine or simply don’t believe that migraine could cause the kind of disability that people incur. Individually, these comments were extraordinary. But comments just like this appear with regular frequency online: unsympathetic employers fire people because they “didn’t believe” claims of illness; doctors fail to provide adequate care, treating migraine as “just a headache”; insurance companies deny much-needed (and physician-prescribed) medication; and friends and family members roll their eyes and tell people with migraine to fight harder to get through the pain.
The stories of delegitimation found on online discussion boards follow a highly gendered trajectory. Individuals speak out about or seek help for migraine, but find that instead of sympathy, their complaints are minimized and attributed to a failure in moral character. Schnakenberg’s post, for example, includes several feminized insults; for example, those who would tell her that she merely needed a distraction or that dismissed her symptoms as a “woman thing.” In addition to the “dirty dozen,” readers plead for people to stop referring to them as a number of additional feminized insults, including baby, whiner, malingerer, pill popper, or hypochondriac. One reader, evidently scarred by so many undermining comments, warned that Schnakenberg, in sharing the article, had exposed herself to the accusation that she was merely seeking sympathy—a characteristic typically associated with needy women.
Another frequent form of delegitimation comes in the form of well- intentioned, but unwelcome, advice. Online commenters describe frequent (and usually unsolicited) suggestions from friends, family, and colleagues on how to treat migraine, ranging from “drink more water” to “take aspirin” to “meditate” or “try an elimination diet.” If electronic support groups are any indication, people with severe migraine resent this advice. Not only does advice-giving presume a lack of knowledge on the part of the person in pain and diminish the severity of her problem, but unsolicited suggestions also imply that she could be doing more to ease her symptoms.
The delegitimation process weighs on people with migraine. Zanitsch, now inducted into the online community, explains the burden of stigmatizing and delegitimating labels in a blog post:
“It is . . . extremely frustrating and terribly heartbreaking to know that while I am stuck in my home, suffering, that people are thinking I am nuts, stressed out, drug-addled and unreliable as a friend or person in general. It’s difficult to know that at any one time when I mumble about having a migraine that someone is thinking, “Just shut up and get over it already!” I can’t even say “I have a migraine” to anyone without thinking I come across as fake and/or whiny. I don’t even want to say it to anyone because it happens too much. . . . I cannot wave a magic wand and make myself suddenly feel up to doing what needs to be done for anyone because I am having a hard time taking care of myself.”23
Other people in online communities share Zanitsch’s concern that they are perceived as “nuts, stressed out, drug-addled and unreliable.” People feel that having severe migraine generates an image of a fragile woman who cannot cope with life; who takes too much medication; and complains about insignificant woes. Like all stereotypes, some of this is true; Zanitsch does take a lot of medication and she does struggle to keep up with work.
Yet, she cannot will herself to be well; without broad acceptance that her diagnosis is serious enough to warrant the disability that she experiences, her “excuse” for staying home seems weak and whiny. Because of these frequently stated concerns about appearing to be “whiny,” part of the ongoing conversation is about the various ways that contributors had “put on a happy face” to hide their pain. “Some of the times you can hide it, and so you’re not whining all the time, you’re not,” as one advocate told me in an interview, “ ‘Oh my God, I’m dying today.’ You know, you don’t do that, you power through it. So nobody thinks you’re really sick.”
Reprinted with permission from Not Tonight: Migraine and the Politics of Gender and Health by Joanna Kempner, published by the University of Chicago Press. © 2014 by The University of Chicago. All rights reserved.