Skip to Accessibility Tools Skip to Content Skip to Footer

Book Excerpt-Not Tonight: Migraine and the Politics of Gender and Health

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 Healthhas 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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

21. Teri Robert. “Elvis and LSD? No, DHE for Migraine! Elvis Presley’s Private Struggle with Intractable Migraines Revealed.” About.com, June 12, 2006. Accessed June 20. 2012 http://headaches.about.com/cs/profiles/a/elvis_mig.htm. 22. Ellen Schnakenberg, “Migraine Dirty Dozen—Things Not to Say to a Chronic Migraineur.” Migraine.com, January 10, 2012. Accessed June 15, 2012. http://migraine.com/blog/ living-with-migraine/the-migraine-dirty-dozen-things-not-to-say-to-a -chronic-migraineur. 23. Heather Zanitsch, “Stop the Insanity.” The Journey of a Migraineur, February 8, 2008. Accessed June 18. 2012. http://aloofelf.blogspot.com/.

Comments

  • mjsymonds
    4 years ago

    This book is badly needed. Thank you Joann Kempner and Migraine.com

    Migraine and depression run in my family and I grew up believing I obviously did not cope well with life because I kept suffering with both. For a long time I thought it was my own fault, I was “too sensitive” and I somehow brought migraines and depression upon myself.

    My mother had both as well, yet she also conveyed the idea it was a moral failing to let on to outsiders that you were not 100% “right” at any given time. It was also clear that she believed admitting to physical illness (beyond something temporary like a cold) much less mental illness was a source of shame and was just not done. Sigh. I can see now the stoicism with with she forced herself to face each day, since she never sought professional treatment, but the pain she suffered behind it all I believe wore her down. She died of cancer at the age of 62.

    In my case, it took me until I was 25 to start seeking treatment for my migraines, 33 for my depression, and until I was in my 40’s to finally insist my doctors take me seriously. I had to consciously unlearn all the early training I had absorbed from my family and society before I could really take ownership of my own health, find the right doctors for me and pursue the treatments that work best in my case.

    What a journey it has been, and I owe no small part of it to online communities like this one, where many fellow sufferers share their own journeys with such honesty and courage.

    Let’s hope the future hold better outcomes for all migraineurs.

  • Les
    5 years ago

    I absolutely understand and relate to this. 69 to 72% of all migraine sufferers are female. And as hard as it is for women who suffer this debilitating disease, being in the further minority, one of the 28-31% of men, imagine the challenges I face as a guy.

    I am forever grateful that this community and website exists. I find comfort here, and even though a guy, I relate to so many women who go through this pain. I thank you all.

  • ddnben
    5 years ago

    I choose not to let people know about my diagnosis. Most people feel a headache is a headache is a headache. My sisters and I all suffer from migraines. I appreciate the greater publicity these days that it really is a condition, and it’s debilitating. Thanks for writing this.

  • Heather
    5 years ago

    Thank you for writing this. The other day my mom and I ended up in a fight because she was telling me how I could be pain free if I only tried harder, and I tried to make her understand that I’m barely getting through the day most of the time. Knowing there are people who truly understand my situation helps a lot.

  • Angie
    5 years ago

    Very few articles, posts or blogs are able to so fully wrap up my personal experience with migraine but this one did so. The memories came flooding back along with all the emotions that went with them. The sad thing is, many of the things stated are regular struggles that one must find a way to overcome in addition to battling migraine disease.

    Thank you for continuing the quest for awareness. I pray a cure is found but until then awareness is the only way others will not be subjected to the above. For your part in that I am eternally grateful.

  • Poll