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Fighting for Migraine – With Words

Fighting for Migraine – With Words

The words and phrases we use subtly influence how we and others think about the world.  This matters a lot for migraine.  It is hard to change people’s preconceived, ignorant notions and arguments just don’t have much of an impact.  I’ve been arguing for a long time, and I don’t think it has changed the general perception of this disease.  But people copy what others say; if for no other reason than we are wired to do so.  So why don’t we who understand this disease, either because we have it, or because we treat it, or because we study it, choose to talk about it in the most beneficial way we can?

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Years ago I would have resented someone supporting politically correct speech.  However, over time I have come to see how certain words and phrases undermine people with migraine, minimizing the impact of disease, and perpetuating the stigma of migraine.

What do people say that undermines migraine and those who have it, and what can we say that accurately portrays this condition in a non-stigmatizing way?  What sets the stage for recognition of the impact of migraine, the value of effective treatment, the need for more research and better policies, and for maybe, just once in a while, a little compassion?

Years ago, Joanna Kempner and I, in collaboration with many others, wrote a paper entitled, Naming Migraine and Those Who Have It. Joanna wrote the award-winning book Not Tonight: Migraine and the Politics of Gender and Health crystalizing, for me, the need to take on a new approach.  I slowly came to a number of conclusions regarding the language that describes migraine.  Recently I have noticed, or have been pointed out, a few other things doctors say about migraine that are now really getting under my skin!

So let’s get to it!

  1. Migraine is a disease when it has a real impact on someone’s life, or when it progressively worsens.  It is a condition only if the impact is small, or when it is a risk factor for another thing.  Merriam-Webster defines disease in this way:  a condition of the living animal or plant body or of one of its parts that impairs normal functioning and is typically manifested by distinguishing signs and symptoms.  Clearly, migraine is a disease; so use that word!
  2. Migraine, not “migraines”.   Saying “I have migraines,” implies you have a few of them.  If you have migraine, you have a disease or condition that can strike at will, and whose potential is always there.  Sorry— that’s the truth of the matter.
  3. Migraine, not “migraine headache”.  Migraine is a heck of a lot more than a headache.  If you want to emphasize the headache part of it, say “the headache of migraine”.
  4. Person with migraine, not “migraineur”.  A migraineur is a person for whom migraine is their entire being and wrong the same way “epileptic,” or “schizophrenic,” or “retard” is wrong.  A person with migraine is not necessarily defined by their disease.   Similarly, don’t say “migraine personality” or “migraine-type person;” that’s just wrong!
  5. Never call anyone else a migraine sufferer. If you want to emphasize the suffering of migraine in yourself, then do so.  I don’t think I have the right to do that for anyone else.
  6. Rebound headache, or medication adaptation headache, not “medication overuse headache (MOH)”.  Medication overuse headache is subtly blaming the person who has it, even when it is the doctor’s fault for prescribing daily abortives or not educating the patient.  Now, there are several concerns, but to my mind they don’t override this argument. Firstly, MOH is the official name and the classification group has not been receptive to changing the name. Secondly, “rebound headache” is wrong about the mechanism and suggests that it is just an attack bouncing back, disregarding the most important thing: the brain has been damaged over time by medicine that helps in the short run.  Most of the time people understand what you are talking about when you say rebound, so for now, I prefer it to MOH.

There are things only doctors say that irritate me.  Here are two such things:

  1. Unmet needs.  Why don’t you just say “treatment stinks,” or “there aren’t enough headache doctors,” or whatever?! Not to mention, who gets to decide what people need?  It implies whatever the speaker wants it to mean without having to examine the assumptions behind it.
  2. Barriers to care. To me this sounds like trying to make a problem sound less severe.  How about, “reasons people with migraine can’t get good headache care”?

I made a convenient table to summarize:

SAY THIS
DON’T SAY THIS
Disease, Condition (sometimes)
Illness, Disorder, Condition (mostly)
Migraine
Migraines
Migraine
Migraine headache
Person with migraine
Migraineur
Person with migraine
Migraine sufferer
Person with migraine
Migraine personality, migraine-type person
Rebound headache or medication adaptation headache
Medication overuse headache
Better treatments, more headache doctors, or whatever you mean!
Unmet Needs
Insurance costs, more specialists, or whatever you mean!
Barriers to Care

I believe that if we consistently use the right words and phrases then over time we can normalize the concept that migraine is serious, yet not self-defining.  This will bring what we all want:  more research, more treatments, less hostility, and less stigmatization.

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

  • Sana Williams
    5 months ago

    i actually have nothing to do with migraine ,but my mother does im here for her im really worried about her and i want to get advices seeing her pass out and fall is heartbreaking and when she falls she can’t talk or move and to be honest i dont know what to do i need help i want to help my mom and the only thing i want right now is for her to feel better
    okay so she has migraines 6 times a month she has a lot of stress and and i dont know what to do to relief her stress because she wouldn’t tell me please tell me what to do im seriously really sad and with not knowing what to do its just sad so please help me out asap

  • Sana Williams
    5 months ago

    i actually have nothing to do with migraine ,but my mother does im here for her im really worried about her and i want to get advices seeing her pass out and fall is heartbreaking and when she falls she can talk or move and to be honest i dont know what to do i need help i want to help my mom and the only thing i want right now is for her to feel better
    okay so she has migraines 6 times a month she has a lot of stress and and i dont know what to do to relief her stress because she wouldn’t tell me please tell me what to do im seriously really sad and with not knowing what to do its just sad so please help me out asap

  • drmadden
    5 months ago

    Personally, I do say I am a migraineur. I was glad to find a term that defined the condition. Why this author has a problem with it I am not sure, to me it sounds like saying you are a diabetic, an epileptic, etc. in other words you have a genuine, real, body wide disease. Not “just a headache”. Also it gets people’s attention, as so few are aware it IS such a condition.
    I have so many signs/symptoms other than head pain, it was such a comfort to find a knowledgeable doctor.

  • Joanna Bodner moderator
    5 months ago

    I think many feel the same as yourself @drmadden. Being referred to as a migraineur is an important part of how they define living with this disease and it should by no means be a controversial topic. The one point that cannot be argued is as said…it’s absolutely an entire body experience & WAY more than just a headache! Thanks so much for bringing your voice into this conversation. Take good care.

  • cindyd
    2 years ago

    I don’t like the MOH definition because to me it seems to indicate that I am overusing medication or abusing it. We already get treated like drug seekers at ER’s. I am not a fan of rebound either but what can you do. People just don’t gwt it if they don’t have them or.live with someone who does.

  • rosie.smiles
    2 years ago

    Exactly, “No one gets it until they get it” (besides a few special people, like my mom, who could see it in my face when I was getting a migraine, and would hold me up so I could puke because I was too weak and drained to hold myself up). MOH makes me sound like some irresponsible druggie…when the doctor is the one who told me to take ibuprofen every day.

  • JackietheG
    3 years ago

    I’ve been a migraine patient for 30 years. I’ve been using Maxalt and typically it helps. Two weeks ago I did Botox and since then I’ve had a constant headache, sometimes really bad. I’ve taken heavy doses of steroids and phenergan, Maxalt and aspirin and it won’t go away. I know it’s due to Botox. The Dr can’t help me. Has anyone had this type of experience.

  • Maureen
    3 years ago

    Words are really important to me, and migraine is a significant part of my life. The two together are a powerful pair. (And, true confession: I prefer intelligence to ignorance!) So I really enjoyed your article, but… I was having a hard time with “migraneur”. More true confessions, here.

    And I have been pondering the problem, because I understand your point, but I also feel more comfortable using that term than using “migraine” alone. I think people tend to tack “headache” onto the end of it, even if only subconsciously. For me, the non-headache symptoms are often more debilitating and frustrating.

    So I think I’ve come up with an alternative! How about if we say “migrainic”? I am migrainic. Or, I am a migrainic. Like diabetic or epileptic or allergic.

    Of or relating to migraines. Migrainic. I think I might try it. Shakespeare invented words. Why can’t we? Is anyone with me? Dr. YOung?

  • Dizzy1i
    3 years ago

    Words are powerful, so I will revise my own vocabulary in accord with this article.

    The societal belief that a migraine is simply a headache caused me endless trouble by delaying treatment for 6 months after my condition became chronic. Thus, I have long felt that the term “migraine headache” is one of the more damaging terms. This term trivializes the pain that most people on this site suffer, it diverts attention from the root mechanism within the brain, and it does not describe the main symptom that a significant fraction of the migraine population endures.

    Examples:
    1) I almost never suffer headache of any type, but I endure debilitating vertigo. (When seeking treatment, I had one leading neurologist in this area tell me that I didn’t suffer vertigo and walked out on me.)
    2) During a migraine one employee presents left-side paralysis. (I don’t believe that she regards the headache equally debilitating–assuming she experiences one–we haven’t needed to discuss this issue.)

    My point is that migraine is a unique disease that needs more research. Defining its terminology to conform to the opinions and biases expressed by “people without migraine” is not helpful.

  • Holly H.
    3 years ago

    Based on your previous article and those by others, I have already tweaked how I talk about my chronic/constant 3 types of migraine with aura. Living in a seniors apartment tower, to folks at this age, brain/neurological disease is pretty much solely associated with Alzheimer’s disease and other types of dementia, so they reflect that back to me. Then there are those that reflect back that since something is wrong with my brain/neurological system, I am “crazy,” a term many love to use around here for anything outside their box of understanding. Therefore, among my age demographic, I have found that the explanation of “I have a severe migraine disorder” is the best way to gain understanding, so I have gone back to that.

    So appreciate your contributions and advocacy on behalf of the migraine community, Dr. Young!

  • Dr. William B. Young author
    3 years ago

    I’ve thought a lot about your response. I think what you have done, field testing your language to see how it works out is clever and makes sense.
    But I have one concern. You are in part judging results with test language based upon what causes the least friction.
    My point of view, which is not that of someone with a migraine right now, but rather what is going to help people in the long run to get more research, better policies from government and insurers, as well as understanding from families in the long run, may differ from yours. If our words cause some friction, but move the overall migraine frame in the right direction, I’m ok with a little friction.
    Recently I was in a meeting with a doctor I respect, but who stated up front he did not think migraine was a disease, and of course I argued with him. And of course I did not change his mind — you can’t with a doctor at least. But for the rest of the morning he used the word disease, even after he realized what he was doing. Hearing it so often just changed him.
    So I hope people use the words disease and person with migraine — not because it is easy right now but because over time it improves our lot. Like the difference between an attack treatment and a preventive treatment.

  • Chance K
    3 years ago

    I agree that language matters. I don’t have a problem with any of the usage you object to here, I’m fine w/ migraineur, MOH, condition/illness/disorder. I’ve never heard anyone say “migraine type person”.

    The one that matters from my POV is I try to say “migraine” and not “headache”. It’s easy to say “I have a headache” when my head is killing me, but lots of people get the occasional headache that they can knock out with a couple of Tylenol, and I don’t want to conflate the symptoms of my chronic migraine w/ that.

  • Natalie Wagner3339
    3 years ago

    After years of suffering with migraine disease my extended family still does not understand. one of their famous phrases is ” tell it to go to hell”

  • rosie.smiles
    3 years ago

    Dr. Young, thank you so very much! I really appreciate all of your articles.

    One of the hardest things with having chronic migraine is the stigma (they think I must be doing something wrong…not exercising enough, not eating healthily or not enough of the right things…I’m taking too many drugs or not the right drugs…or it’s a mental thing–“You think you’re going to get a migraine and then you do…You must be have anxiety and depression because that’s just how people with your kind of problems are”). I have never referred to myself as migraineur and I do not talk about others that way. I don’t want my illness to define me. Apparently in others’ eyes, it does define me (e.g. a lady who is teaching her daughter sign language taught her that the sign for sick is the sign for me–that was hurtful because now in both of their eyes I am synonymous with my illness: sick=me); but it shouldn’t have to be that way.

    It aggravates me that whenever someone has chronic daily headache, they “must” have medication overuse headache and they are treated as “just another one of them”…as if people with migraine or chronic headaches are all the same. I agree that medication adaptation headache is a much more fitting term than medication overuse headache (after all, it was the doctor that told me to take ibuprofen every day…and then another doctor tells me I am having headaches because I take too much ibuprofen). I don’t think it’s fair that everything is the patients’ fault, when in reality, we would do pretty much anything to get rid of migraine. We have been through all kinds of treatment that most people couldn’t endure. I wish everyone with migraine (or other debilitating chronic health problems) would realize the value they have as a person and that they are not their illness. In fact, I believe that the prettiest eyes have cried the most tears, and the kindest hearts have felt the most pain. I think people with migraine are brave and strong, and should not be blamed for their disease.

    Thank you for all that you are doing.

  • cindyd
    2 years ago

    Very well written reaponse. I agree…

  • Sue_AS
    3 years ago

    Thank you Dr. Young. I am printing and handing out your post… To healthcare professionals in my health care network. Having been only recently actually diagnosed with migraine (although I now realize I have been experience migraine most of my lifetime), I am acutely aware in my brief dealings with healthcare network professionals, how many of them are not well informed when it comes to treating migraine. The best word to describe dealing with them would be ‘frustration’. I have basically turned instead to the internet to ‘research’ this condition myself in order to better help myself. I feel pretty well dismissed and my condition trivialized by them. It is only take this pill, bye. One even said to me, “get a new pillow”. Really?

  • Carl
    3 years ago

    Thank you for this. I need to put my hand up admit I’m guilty.

    I’ve been using the word migraineur regularly… for no better reason than it was easy. But it wasn’t until I read your article did I realise exactly the impact this has. And I agree with you. We are not our disease and perpetuating a permanent label like this does little to help our cause.

    Regarding MOH, I’m not sure I agree. Shouldn’t the official terminology be the way forward? We are struggling to get the proper ICHD terms in use as it is.

    If there’s a problem with ICHD terms then that needs to be addressed at that level. If we encourage the use of other terms outside of the ICHD will this facilitate greater confusion amongst patients and doctors?

    Great article Dr Young and something we should all be thinking more about.
    -Carl

  • entsmith
    3 years ago

    Great article Dr Young! Thank you for being a great Dr as well.

  • H
    3 years ago

    Words do matter! I think this was a thought-provoking column and is something that anyone who has an interest in migraines should consider. Society has, appropriately, transitioned away from calling patients with diseases like cancer “cancer victims” or “cancer sufferers” and instead uses much more positive terms like “cancer survivors” or “woman or man with cancer.” Not everyone who has experienced cancer is comfortable with these terms, either, but most people agree that changing the dialogue around cancer was one of the things that needed to happen in order to change society’s perception of the disease. Not only was this important for the individuals dealing with the disease, but changing perceptions helped open the door to more funding and better treatments for the disease — something everyone who is familiar with issues surrounding migraine agrees is desperately needed.

  • Dr. William B. Young author
    3 years ago

    I couldn’t agree more
    Or said it better
    Thank you

  • mrst53
    3 years ago

    I don’t know or really care what I call myself, but I do want more therapies for my migraines. Spring/summer is here with the temperatures flucuating and storms and my migraines are back every day. I alternate my meds, so I don’t have rebounds, but I wish I had something else to try. After 50 years of this headache, and I know others have had them longer, we deserve better and cheaper meds and therapies.

  • Jill M.
    3 years ago

    Great article, Dr. Young! It’s good to see a professional that’s truly on “our” side! I agree with the list for the most part. I don’t like using the word “disease” because I tend to think of things like heart disease, cancer, or even childhood illnesses such as chicken pox. To me, disorder just makes more sense. I view someone with migraine as having a neurological system that is not functioning properly, sort of a “brain out of order” and disorder just seems to fit the bill better for my way of thinking. Of course, I may be thinking differently than everyone else! LOL I also use the word migraineur when describing myself. I kind of like the connotation it gives, not because migraine encompasses my entire being, but because it is a particular “club” that I identify with.

  • Dr. William B. Young author
    3 years ago

    I agree migraine is definitely a disorder.
    It is also a disease.
    For me, you look at a disorder and observe it. There isn’t much urgency. Even if it is a bit unpleasant.
    Diseases: we attack them, try to cure them, manage what we can’t cure, and study them with urgency. Diseases profoundly affect people’s lives. Disorders sometimes do as mental health disorders, otherwise not so much.
    For all these reasons I’ve tended away from disorder….
    Again, I’m not the dictator of migraine English, but eventually this is how I’ve come to think.

  • Deirdre2
    3 years ago

    Although I agree that words have power, I don’t feel as if anyone has the authority to determine what is the right language for all people of a hugely different group, from symptoms to treatments to self identity. Why don’t we all choose our own language from the vocabulary available, and claim our own power?

  • Mr FBP
    3 years ago

    The problem with each choosing our own definitions and language is that we then find it hard to communicate to others our personal experience, as they won’t necessarily apply the same meaning or weight to our words that we do.

    But I do appreciate where you’re coming from. I was a Social Worker for many years and I got frustrated that professionals got more worked up about the language used to describe problems than they did about the lack of adequate solutions to people’s problems.

    If someone like Dr Young is properly focussed on improving care pathways for people, and sees changing language as part of that, then I see the two as going hand-in-hand.

  • Dr. William B. Young author
    3 years ago

    Of course. I do not advocate dictatorship. I don’t have any authority.
    I have been thinking a lot about this for about five years.
    I think consciously examining the words that are being used and choosing to use ones that don’t perpetuate the negative assumptions imbedded in some of that language is about exactly about claiming our own power.
    An individual can’t change very much outside their immediate sphere. But if we unite in some better direction, we can together make for a huge change.

  • chericoe
    3 years ago

    Thank you, Dr. Young, for an informative article and explaining the situation of migraine. I guess unless you actually have the disease it is hard to imagine what it is like. I am glad you have brought up all the important facts and appreciate it very much.

  • Tammy Rome
    3 years ago

    Agree 99%. I like referring to myself as a “migraineur” because I have been living with this disease my entire life. The first time I heard the word, I embraced it. Migraine has shaped my personality, my character, and nearly all of my life choices. I wear the label like a badge of honor because I can finally stop hiding who I am and what I live with. It’s a way for me to take back power and defy those who see me (and other people with migraine) as fragile…a source of pride rather than shame and secrecy.

    I see your point about the potential for it to become a perjorative term though.

  • CarolF
    3 years ago

    I can relate well to this. It is freeing to now label myself a migraineur, after so many years of meds, preventative and abortive, trying to deny its impact to anyone but my closest circle. The fact of others who are walking the same walk – as in part of a club, is comforting and inspiring. Power in numbers and language to change perceptions and drive new treatment options.

  • Victoria
    3 years ago

    I also refer to myself as a migraineur when I’m discussing migraines and triggers with others. I don’t impose that language on anyone else. That’s their business.

  • Dr. William B. Young author
    3 years ago

    For me “migraineur” was my last hold out to tradition. It sounds pretty good. And it to me gives the impression of tying patients, myself, to an international tradition of migraine study.
    Ultimately, I have come to the position that this makes it a more difficult enemy to fight. It is like saying “migraine type person” in a really nice way. It is still wrong, but harder to fight because of its’ good qualities as a word. But ultimately calling everyone who has migraine either a “migraine type person” or a “migraineur” is wrong.
    If you call yourself a “migraine sufferer” you can imagine someone else has migraine but is not a sufferer. Somehow if you and I have migraine, it is hard to say you are a “migraineur” and I am not. In doing so, you have soaked others in migraine-ness in a way that might be wrong for them.
    I guess I’m asking you to reconsider….

  • Eleanor R.
    3 years ago

    Wow! Fabulous article. And a doc who really understands. If only I were well enough to travel cross country …..

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