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Living With a Disease That

Living With a Disease That’s Dismissed as Inconsequential

Migraine has rendered my life and my personality nearly unrecognizable. To say it has wreaked havoc on my life is the understatement of the century. This is an experience familiar to many people who have migraine. Yet, also like so many others with migraine, I’m wary to tell anyone about the devastation because the response is so often: “What’s the big deal, it’s just a headache?” or “Take an aspirin and get over it.” Most of the time, this makes me feel isolated and sad, but sometimes I get angry. During a recent bout of fury, I wondered how the general public’s understanding of a disease could be so radically different from the reality of people who live with it. These are some of the questions I pondered in that anger.

How is it OK that a disease that devastates lives is dismissed as no big deal? How is it OK that people who suffer tremendously are dismissed as complainers?

How is it OK that people with migraine live in fear of the next attack, no matter if they have attacks three times a week or three times a year?

How is OK that as many as 15 million Americans have migraine attacks on a near-daily basis? 1

How is it OK that when someone on a migraine forum says, “I don’t think suicide is an option for me, but I hope to get cancer and not treat it so it will kill me,” the most common response is, “Me too”?

How is OK that even though there are medications that can provide many people with migraine relief, primary care physicians continue to prescribe medications that aren’t particularly effective for migraine and can actually make it worse?

How is it OK that people live for years, even decades, with severe, continuous migraine, despite seeing the best headache specialists in the world and trying treatment after treatment?


How is it OK that when a kid tells their parents that they have frequent, painful headaches, the response is often “take an aspirin and stop complaining,” rather than taking the child to a doctor for evaluation?

How is it OK that kids have to repeat grades in school because they’re so sick from migraine that they miss too much to keep up? Or that people have to drop out of college because of migraine?

How is it OK that kids as young as two can say, “Shhh! Daddy has a migraine” or “Don’t upset mama, she’ll get a migraine”?

How is it OK that people who want nothing more than to be parents live childless because migraine is so severe that they are unable to care for themselves, much less children?

How is it OK that in 2014, the NIH spent $20 million on migraine research and $253 million on schizophrenia research when 12% of the population has migraine and 1% has schizophrenia? Even if you go by disease severity, studies show that as much as 3% of the population has chronic migraine. 2-4

How is OK that, according to a highly respected WHO study, severe migraine is as disabling as active psychosis, severe depression, quadriplegia, and terminal stage cancer, yet most people think it’s just a headache? 5

How is OK that a neurological disease that causes as much disruption as epilepsy—and affects 10 times as many people—is thought of as just a headache? 6

How is it OK that the dearth of research funding tells people with migraine that their lives don’t matter?

None of these things are truly OK, of course, but it is the reality those of us with migraine face on a daily basis. We live with a disease that affects every aspect of our lives and can cause massive disability, yet we’re surrounded by people who seem to think this is no big deal. Even those of us with solid support systems are told nearly every day in ways large and small that our suffering doesn’t matter. It can come from partners, family members, friends, bosses, coworkers, grocery store clerks, nurses, doctors, pharmacists, the media, even the government. This is not OK.

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.

  1. American Migraine Foundation. 36 Million Migraine Campaign. Retrieved on April 29, 2015 from https://www.americanmigrainefoundation.org/assets/1/7/36millionmigrainecampaign_v4.pdf.
  2. National Institutes of Health. Estimates of Funding for Various Research, Condition, and Disease Categories. Published Feb. 5, 2015. Retrieved April 29, 2015 from http://report.nih.gov/categorical_spending.aspx.
  3. National Institutes of Health. Schizophrenia. Retrieved April 29, 2015 from http://www.nimh.nih.gov/health/topics/schizophrenia/index.shtml.
  4. American Migraine Foundation. Migraine—Who Does it Affect? Retrieved April 29, 2015 from http://www.americanmigrainefoundation.org/about-migraine/.
  5. Mathers, C., Fat, D. M., & Boerma, J. T. (2008). The global burden of disease: 2004 update. World Health Organization.
  6. Theodore, William H., et al. "Epilepsy in North America: a report prepared under the auspices of the global campaign against epilepsy, the International Bureau for Epilepsy, the International League Against Epilepsy, and the World Health Organization." Epilepsia 47.10 (2006): 1700-1722.

Comments

  • Lesley
    4 years ago

    Great post, thanks, Kerri…

    My brother was an internist and physiatrist and he told me they basically got a one-hour(!) discussion of migraine in medical school, period. He had a very simplistic definition of migraine and once told me that I didn’t have migraine bc I often have pain on both sides of my head. And he was on *my* side.

    Also, the best practitioners I had were themselves migraine sufferers. As others have said, if you haven’t experienced it, you really can’t know.

    I only wish they weren’t referred to as migraine headaches, since it’s a full-body neurological event and sometimes pain in the head isn’t even a symptom. As you say, people think they know what a headache is, so by definition migraineurs are just wusses, malingerers, complainers.

    And I agree with the commenter who said we need to get organized and start an awareness campaign with a good PR/marketing/social networking person. Somebody please tell me that anyone in this country doesn’t know about mammograms… but migraines?—people are shockingly ignorant about them, and we pay the price, with our families, friends, coworkers, bosses, and most shamefully from doctors.

    When you have a bad experience with a doctor, make sure and get the name (if it’s at the ER and you might not actually know the doc), and do some online reviews telling people with migraine to avoid this doc like the plague. We are taken advantage of bc we’re too sick to advocate effectively for ourselves. With doctors, we can (sometimes at least) vote with our feet and make sure to let everyone know why we’re leaving and that we’re going to sing out loud and clear to steer people away from them. It sounds harsh, but it’s down to us to get people’s attention.

    I remember when I first went to a headache specialist back in the late ’90s. There was a headache journal there and while I waited I looked at a study. They concluded that migraineurs were mostly women, and that we were perfectionists who dressed rather mousily(!). It was as patronizing and dismissive as you could imagine, and these people were supposed to be helping us!

    Anyway, wishing all a pain-free day…

  • Meri
    4 years ago

    Hi everyone. My name is Meri and I suffer from hemi crania continua which is basically a continuous, daily, ongoing, one-sided horrific ice-picking pain in my head! I can empathize with all of you and know exactly how you feel. I’m sorry for your pain because I know what that’s like. Im glad I found this forum and that I can share my experiences with you guys… Talk to you later…

  • Varvara
    4 years ago

    It is not okay and I made the decision several years ago, that when I get better, I’m going to be an advocate for people who suffer from migraine. Or, just keep educating people. I’ve shared several of your articles (and by others) on Facebook just to enhance awareness. I understand that the general public doesn’t understand migraine (because I didn’t when I was first diagnosed with chronic migraine. I thought, “Oh, I know how to handle stress. I taught yoga.” And, mistakenly, I thought any doctor would be able help and ended up on medical leave because of the wrong drugs prescribed to me. Instead, like many of us, we must drive two hours or more to get to a doctor we trust and who doesn’t dismiss us. I just went to a health clinic where I live because I have what may be an osteoarthritic cyst on my middle finger knuckle. But, I think I have fibromyalgia, which I read oftentimes goes along with migraine. I have foggy brain and I’m so weak I can barely get up and have had weird, painful abdominal bloating that came while a storm was brewing. Anyway, I was very sick when I went to the clinic – chilled on a 60 degree day, have been foggy-brained, weak and so incredibly tired, can’t think of the next word,and lose my train of thought. When we feel this way, everything is overwhelming. The doctor said to me, “You are a catastrophist.” What?! I very patiently (because I didn’t have the energy to do otherwise) said that migraine has changed me and I’ve become agoraphobic and afraid of any change in my routine (I get sick if I have to do anything more than getting myself to work). I used to go biking, hiking, kayaking, travelling by myself. Now, I’m holed up in my house and afraid to venture out because I don’t know how I’ll do. Didn’t mean to ramble and blah, blah, blah about it; however, I was so angry when I left. And, again, made to feel like I’m a failure or that I’m the cause of my suffering. And, then they don’t understand why we don’t go to the doctor for other things. I, too, have thought many times, walking home and feeling a migraine coming on, that it would be so nice if someone were to run me over and there better not be some do-gooder who tries to save me! That’s not okay. Thank you for this website and for your articles that help us know we aren’t the only ones dealing with these situations.

  • Stace31601
    4 years ago

    I thought about what I could do to truly express myself and came back with THANK YOU, so much

  • BethBlue
    4 years ago

    Enough of the “bathtub” and “tow some horses” ads! It’s time for all of us to get the exposure we need as well! Anyone out there know someone in an ad agency? Pharma company? Because I’m married to an independent producer, and he’ll help. I’M SERIOUS.

  • Jackie
    4 years ago

    Thank you from the bottom of my heart Kerrie. There are times when I have also thought of the if I get cancer thing but then it would devastate my family so I struggle on. I am having more surgery for my migraines to help me function.

  • Dee
    4 years ago

    Thank you Kerrie. Once again you have expressed what every migraineur has at some time or another thought about. It appalls me that this is an ancient disease that still hasn’t unveiled its cause nor effective treatment. We should all lobby for the NIH to give it more attention. I have written to them on two occasions expressing my dissatisfaction.

  • Sheila K.
    4 years ago

    One line of thinking which literally has me becoming homeless, Kerrie, is this response from everyone watching it happen “I just hate that there is nothing I can do”, “Right Mom, I do run from “it” because there is nothing I can do.”, “Your family knows your disabled, Sheila, but there is nothing we can do about it.” “I can feed you, but you’re on your own with Migraines” and last one from same family “You choose to be isolated. The problem, dear heart, is not your family.”

  • Sheila K.
    4 years ago

    This is the absolute best representation of my deepest pain. Thank you from the bottom of my heart. It will do me no good to print this out for my cruel abusive mother that I’m dependent on. I will get accused of “ranting” and “bad behavior” if I print one more article of awareness.

  • bluebird
    4 years ago

    thank you

  • RobertCan
    4 years ago

    None of it is okay, but it is our reality. A reality that even some in the medical community do not understand and choose to judge, only because they’ve never experienced our pain. I used to think that I could never wish this pain on another human being, but my thinking evolved to the point where I know there is no better way to understand, except to experience it firsthand.

    I’ve never met a migraineur that sought medication for any reason other than to relieve pain. We shouldn’t feel apologetic for needing pain relief. Especially this level of pain. Its not okay that we’re judged for seeking relief.

    It’s not okay that my family has grown “accustomed” to my daily pain. So much so that they’ve become numb to how severe it can be for me.

    Its not okay that I can no longer work and be productive.

    Its not okay that my insurance company denies certain treatments because I’m “not in enough pain” to justify the expense. How do they make an informed decision on someone else’s pain level?

    There’s nothing ok about migraine. Nothing!

    Wishing you all a pain-free day – robert

  • Teresa
    4 years ago

    Thank you Robert for expressing how I feel about the medical community. I have been refused treatment by the ER because the doctor told me that “It isn’t an emergency situation,” and that I would have to pay $300 up front before he would even continue to talk to me. Keep in mind that this not just a migraine, but a bout of Status Migranosus (which if anyone here doesn’t know, is the type of migraine that causes strokes.) Of course, I didn’t have $300 to spend at the time, and so I walked out and my husband drove me home. I spent the entire ride home hanging out the window throwing up. I only wish that I had thrown up sooner, so I could have done it on the doctor.

    I have also had my insurance company turn down procedures and medications because there was not enough proof that it was a viable treatment for migraine. How are we supposed to get proof if no one is allowed to try it?

  • Beth
    4 years ago

    Thank you for being a voice for all who suffer with migraine disease. None of this is right! It’s wrong to loose a job because of poor health. It’s wrong that a person be denied disability benefits because some of their triggers are being on a computer for more than a few minutes and florecent lighting. This is happening to me (I have other health issues also). I’ve been told that I can get a sit down job. Where is there a job without the lighting and no computer?? I feel like no one is listening. I’m so depressed right now.

  • Teresa
    4 years ago

    Wow, I have never had sitting down relieve a migraine, lol. I do understand your pain though, because I can no longer work and I also had to drop out of college, which it took me 20 years to get to in the first place.

  • Jill M.
    4 years ago

    Thank you for a great article, Kerrie! It’s not ok, none of it!! And it’s well past time for the rest of the world to understand that. Thank you for being a voice for those of who don’t have that opportunity.

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