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Re-Framing Migraine

Re-Framing Migraine

Migraine gets lousy press. Sure, we get a lot of articles in women’s magazines on “holiday headache,” “foods to avoid,” and “sex and headache.” Unfortunately, these types of articles encourage the notion that migraine is a nuisance disease, lead to misunderstanding for the journey of people with serious and disabling migraine, and ultimately restrict funding for the research that will lead to meaningful treatments for people who really need them.

NIH spends about 20 million dollars a year on migraine and headache research. This may seem like a lot, but it is actually a tiny amount. If migraine was funded like other diseases that cause a similar amount of disability it would get from 200 to 400 million dollars a year. One reason migraine research is so poorly funded is because of the social stigma of the disease. In a study of research funding of disease, the social stigma of the disease was an important factor in determining which diseases get funding. Disease advocacy was critical in reversing stigma and improving funding.


Stigma is the extreme disapproval of a person based on a disease or characteristic. A person with a disease hears and experiences this disapproval which is called “enacted stigma.” Eventually this leads to internalization of these beliefs through a process of self-concurrence which leads to “internalized stigma,” causing psychological distress. For other diseases, there have been concerted efforts to reduce stigma. Good examples are AIDs and epilepsy. These efforts have been successful, and as both diseases were de-stigmatized, they got more research money.

Several years ago I read a paper on measuring stigma in various diseases, and the very next day an intern in training at our facility who had a month of research elective asked if I had a project for her. So we measured stigma in episodic migraine and chronic migraine patients in my clinic, and in epilepsy patients in the epilepsy clinic. On average, the chronic migraine patients had worse stigma scores than either the episodic migraine or epilepsy patients. You can hear more about my research on stigma on YouTube, or read the original article.

Patients who sit in my waiting room are not the average persons with migraine – their disease is much more severe. More than 45% of the chronic migraine patients and 20 percent of the episodic migraine patients were unable to work due to their migraine. The epilepsy patients’ ability to work was similar to the episodic patients.’ In large part the worse stigma of chronic migraine related to its relationship with the ability to work. For both episodic and chronic migraine, there was no relationship with a person’s gender, age, or income: stigma hits everyone.

Disease stigma can be reversed. In order to do this, we need an understanding of why migraine is stigmatized and we need an effective plan on how to reframe it. Unfortunately, the ignorant public sees people with disabling migraine as morally weak for not functioning normally despite their headaches, and having them because they did something wrong by not properly addressing their lifestyle. The disease itself is, bizarrely, perceived as either being easy or impossible to treat. Part of this comes from pharmaceutical companies who have touted their medications as very effective, undermining the very large group for whom they don’t work.

The other problem is that the pharmaceutical industry, along with the world of academic headache medicine has emphasized the large number of people who have migraine, without differentiating the mild from the severe. Saying that 36 million Americans have migraine (and implying they should be on an acute medication and a preventive) is good for getting investors to see the market potential of a drug, but it undermines the credibility of migraine as a serious disease. At some level the public says that if that were the case, they should know dozens of people with that serious disease, and they believe that they don’t. There are two reasons for this misunderstanding: the epidemiology mixes in the a few Excedrin a year person, with the person who is on three preventives, uses 3 abortives and still has out of control disabling migraine. The other reason is that people with migraine hide what they actually have, and people around them don’t know what is going on in their lives, because of the social stigma.


So what can we do about it? I believe the headache community must take responsibility for reframing migraine into something that is both true and sympathetic. This should not be spearheaded by drug companies, but by the community of persons with migraine, the doctors who treat them, and the scientists who study migraine. But most importantly it should be done intelligently, and not repeating past mistakes.

How do we reframe migraine effectively? Any new frame must be very simple, and attention getting. The American Headache Society’s ad hoc committee on reframing came up with this new frame: 1- migraine is severe; it is common to lose a job or have a severely restricted social or family life due to migraine, and 2- people with migraine are sympathetic, good people doing as well as possible in the face of unrelenting pain and associated symptoms. I would go further; persons with migraine are heroic, carving out their best possible lives even when there is little effective treatment, and damn little understanding.

The problem for now is how do we study a new frame? How can we know it is going to help, before we make a concerted effort to gain acceptance for it? We need to determine the most effective frame that leads to what we all want: more understanding of the disease and help for the person who has it, more research, and better treatment.

If we can study a series of frames, find the one that is most effective and all get on the same team in changing the perception of migraine, then migraine patients will be less stigmatized, research will get funded, and the lives of all persons with migraine will improve.

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.

Comments

  • glassmind
    3 months ago

    Excederine is a stick in my craw. Everytime I see that commercial, I think, “Who are these people who have a condition,with the same name as mine, but are well and functioning after taking Excederin? Are they really talking about Migraine?”

    And also, the people who do have lesser migraine and say “oh, i sit in the dark for a few minutes and then I’m okay”

    I wish the spectrum of migraine had better terminology. Mild or diabiling adjectives used with Migraine still keep them all clumped as one thing in peoples minds.

    We have strain, sprain, tear, and rupture for muscle and ligament injury. We need something similar for Migraine.

    I’ve had brain strain and brain rupture, but my dr calls them both migraine. Aaaaa

  • Doughgirl54
    11 months ago

    thank you for this article Dr Young, Wish my doctors were understanding. they need to all have to go to a special class to learn that there is so many of us out there in pain.. Please continue spreading the word,

  • myukna14
    11 months ago

    Hi Dr. Young, thank you for such a thoughtful, and insightful post. I’m curious what your knowledge of TENS therapy may be?

  • Trace
    1 year ago

    Really good article! One way to change perception of migraine, I think, would be to not call them headaches. Even saying migraine headache seems to trivialize what migraine is. We wouldn’t call cancer a cold, so calling it neurological migraine (or whatever) would start a change.

  • Holly Baddour moderator
    1 year ago

    This is such a good point. There’s worlds of work to do to shift the embedded stigma that surrounds migraine and the misunderstanding regarding what migraine really is. And you’re right, language really matters. I’ve begun to embrace defining it as a “complex neurological disease” because of how many symptoms are involved. That said, I know people with migraine that don’t want to say they have a “disease”. So, they call it a “condition.” There is much variation within the field about how to refer to migraine which certainly doesn’t help matters. Glad you chimed in!

  • terri64
    3 years ago

    Thank you. It’s so frustrating. I lost my job in January due to issues with my migraines. I’ve been looking for work for the last 6 months. If you indicate you have migraines that puts you out the running for a job. I can’t drive due to the vertigo. But yes, we need to teach society that a migraine is not “just a bad headache”.

  • reasings
    3 years ago

    Well said, thank you!

  • Daniel Blessed ByGod
    3 years ago

    Dr. Young is there a way for ( us ) the collective of sufferers to help you study theses series of frames to change the perception of migraines? Please let me know what I can do to help…ie.. studies, tests, polls ? ( We ) the collective want to help. Thank you for being so empathetic Dr. Young. Please have a great day Dr. Young.

  • cathyn
    3 years ago

    AMEN, Dr. Young! What you wrote should be shouted from the mountaintops, as far as I’m concerned. I get very upset when people refer to migraine as “a headache.” I can function with a headache, I can’t function with severe pain on one side of my face, nausea, dizziness, sensitivity to the slightest sound, brain fog, agitation, etc. We need to get it out of the public’s collective heads, that migraine is “in the head” painwise.

    As for stigma, I’ve considered telling people I have a different disease than chronic migraine to avoid the looks/reactions if I have to cancel plans, can’t make an appt. in the mornings (ever), etc. Maybe than I’d get sympathy, or at least a glimmer of understanding. Thank you for the blog…please keep writing and spreading the message!

  • rosie.smiles
    3 years ago

    Wonderful article!!! More people need to read it. It was by far the best article I’ve read on migraines in a long while. I have chronic intractable migraine and one of the worst things is being misjudged. Let’s not add insult to injury. Thanks for a good article!

  • Winnie St. Mark
    3 years ago

    THANK YOU Dr. Young. This was one of the best articles about migraine stigma I’ve ever read. I’m nearly to tears with appreciation for your understanding. Probably my biggest frustration with my disease is the stigma surrounding it, and the feeling of constantly having to explain, defend, and usually give up on trying to get people to understand. We do need a new frame. Thank you for expressing this.

  • JanetH
    3 years ago

    I enjoyed and appreciated this very much. I am fortunate that I am able to work despite migraine headaches, but I’m often not a very happy camper. I would like to believe there could be more of a happier healthier future than being “functional,” and yet, I realize I’m much better off than many. That realization doesn’t help much when you wake up with a nasty headache knowing you have a lot to try and do at work that day, however….

  • menopausalmigraineur
    3 years ago

    Thank you Dr Young for your advocacy efforts. As being challenged with a lifetime of migraines, from pre-adolescence on going from what used to be called “classic” fugue episodic migraines that were brow beat under control so I had a college life and career and even a family. But that hormone switch triggered acute daily cluster migraines when I had my children. These disabled me from my high stress project management career rather quickly. The stigma of “just a headache” bankrupting your family, taking your job, your house, most of the food off your children’s table…no one will understand how much of a failure you feel as a person, let alone as a mother. My husband was very supportive, for almost 27 years, until even menopause didn’t give him back the fun loving, outgoing, nurturing wife he had married. He finally lost hope and had to call it quits.

    Now I watch it all again happening with my children and feel the guilt of having passed on the genes that are giving them this crippling and mind fogging disease. They both say they get used to the pain and I agree with that, it’s the fogging of your ability to think, the light sensitivity, the nausea, the vision effects, the hearing hallucinations, the inability to deal with the smell all the manufacturers are putting into EVERYTHING now so you feel under attack every time you leave the safe environment of your home.

    And even there it’s not safe. They change the additives in your food, water, or add a new smell to a product and you are airing out your home, no matter how cold it is outside. Otherwise it could be a week or two of “headaches” and my rescue drugs are running almost $100 a shot and I’m limited in how many I can take by other physical problems.

    This is our “normal” or our “new reality”. Whatever it needs to be for the least pain and most enjoyment in our constrained lives. We can’t live in bubbles, but we can do without doctors, nurses, families and friends telling us it’s “just a headache(or the other one I’ve gotten…it’s just an allergic sensitivity to smells…take all these allergy meds that you know you don’t need so you can sleep through your only daughter’s engagement party so the prescribing doctor will actually listen to you).

    After spending over forty years of my life following the research done on it, it is pretty clear to me that migraines ate as far from a headache as a Great White is from the Easter Bunny. Both are white…that’s about all they have in common. ;D slowrider and others have already made the same point, these are neurological disorders that may incorporate a headache as a SYMPTOM and even have a tension headache as part of a symptom, but research money needs to go to the underlying disorders.

  • Trisha27
    3 years ago

    Thank you so much for your article Dr. Young. I am a 20 year migraine sufferer. I have hidden my pain for years due to the stigma, even to my husband and friends. I am so tired of being treated like a weak person because I have migraines. We tend not to ask for help, or show how really miserable we are at times. Hopefully, some day soon research will find an answer to the cause and we will be taken seriously. I find it so important to keep fighting and not give in to the pain.

  • Fred
    3 years ago

    Dr. Young, thank you for the compassion and support – you are indeed heroic in your efforts to change thinking on migraine.

    “slorider” has described my situation verbatim. I’m in a constant battle to avoid med overuse. I have no choice but to continue working in a high pressure environment where there is little understanding for taking time off due to a “headache”. Why? ….because “headache” is the first thing that comes to mind when most non-educated people hear the word migraine. IMO the word “headache” itself causes the stigma…..everyone has headaches right!!!

    This post is a light-bulb for me. I now realize I have internalized this stigma to the point where I generally think of myself in an unfavorable way.

  • Mary Margaret
    3 years ago

    You are so right! This is a light bulb moment. The pain part is in our head but migraine is not like a headache, really. Yes our head has pain in it, but it also has crippling aphasia, audio and visual impact as well as digestive impact and major fatigue associated. You are on to something. Wish I was a writer. There must be a way to express this simply. Something visual may be best. I am rambling. But I love your aha moment.

  • slorider
    3 years ago

    Thank you Dr. Young for your tireless work in helping people with migraine. I am a patient at your headache center. I do agree with Luna that there needs to be a greater understanding that a migraine is a neurological disease, not really a headache. A headache may be one of the symptoms, but a migraine is much more than a headache. I crawl to work sometimes because I do not want to be viewed as “weak due to migraine.” I have even hid under my desk. This behavior has led to overuse of medication and has transformed my migraine into chronic daily migraine. Let me know how I can help.

  • Polly Moyer
    3 years ago

    Thank you, Dr Young, for an excellent article and for addressing the issue of the stigma that is associated with migraine.
    For me the key issue is preventing the cycle from including the internalisation phase. As I’m sure you are aware, our support sites are full of comments from people who say things like ‘I feel so bad because I had to miss watching my kids play soccer.’ Patients need constant reinforcement not to feel guilty so they don’t internalise the stigma.
    If we are empowered to see the stigma as ‘someone else’s bad attitude’ rather than our fault, we can be heroic. My GP is exemplary in this respect and always reminds me that it is migraine/MdDS that limits me, just like a broken leg would limit someone. In fact she goes further – the second time I met her she said ‘I find neuro-normals boring.’
    This was in stark contrast to a comment in one of the MdDS support groups the same week. A woman reported that her ENT laughed at her during the consultation and suggested that if she went shopping with her friends, she’d be fine. Anything you can do to stamp out this bad practice and replace it with a ‘gold standard’ of the service we should expect makes you a hero too.

  • Tapati
    3 years ago

    I also agree that the public needs to understand that migraine is a neurological event, not something similar to the bad tension headaches they themselves sometimes experience and treat with OTC remedies.

    Regarding proving chronic pain for disability insurance, I wonder if evidence from brain scans while someone is in pain showing the activation of the pain center would give tangible evidence that the applicant is not making it up. Unfortunately many pain patients are only able to get disability when the pain also causes depression and/or anxiety.

    Thank you for studying stigma and writing about it. We definitely need more research funding!

  • mvpofpain1
    3 years ago

    This was an excellent article. Thank u for bringing attention to this issue. I managed a pain Clinic for several years n as a chronic migrainuer, the stress of that position only complicated my situation. I was then diagnosed with hemiplegic migraines, So while I was on 6 preventatives, triptans were no longer an option. I’m a single mom of an autistic child n had to fight for disability. Migraines r debilitating n I wouldn’t wish them on anyone! I’ve dealt with this for almost 30 years n it feels like they’re just getting worse! Commercials make them seem like a joke! It makes angry! Y hasn’t this been addressed before now? Maybe it’s because u only “feel like ur dying”? I’m so thankful that u wrote this article;my only wish is that the right person will read it.

  • slhart
    3 years ago

    Dr. Young,
    Thank you for this information and all you do for people with migraine.
    I faked my way through life and my career but eventually lost my high pressure job and denied my disability insurance thru #UNUM even though they agree my chronic migraines are disabling by their policy wording that headaches are self reported.
    Not fair at all

  • Holly H.
    3 years ago

    Thank you for your article, Dr. Young, and for being a proactive voice on the front lines. “How do we reframe migraine effectively?” is a fascinating concept. Being an older person (with severe major migraine disorder), I have seen through the years such turnarounds into public acceptance and advocacy for various causes, concerns, and programs with the use of reframing – thereby creating a touch-point that resonates with folks in order to create understanding unto advocacy. I wonder how we could be able to keep up to date with the progress of those working in this arena of migraine reframing?

  • Tammy Rome
    3 years ago

    Thank you, Dr. Young for this eloquent and insightful article. I absolutely agree that a reframing is necessary. I believe the AHS is off to a good start and agree with an earlier comment that emphasizing all of the effects of migraine (not just the headache) will begin to break that stigma.

  • Luna
    3 years ago

    Good article. Thanks.
    Most people do not understand that migraine is a whole body disorder not just a headache. I have found that makes a difference in peoples perceptions.

  • Nancy Harris Bonk moderator
    3 years ago

    Dr. Young,

    Thank you for this information and all you do for people with migraine.

    Nancy

  • Chance K
    3 years ago

    I also agree that to effectively reframe migraine the disease should be explained in the context of its full range of symptoms, not head pain only. Otherwise I agree w/ emphasizing its severe, disabling nature and the consequences that has on every aspect of our lives — physical, mental, occupational, social.

    I think that the other bits will ‘fall out’ from this, i.e. that migraineurs are doing our best, that we are not drug seekers, lazy, fakers, anti-social, etc.

  • Poll