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The “Migraineur” Controversy

“Migraineur” is a term used to denote a person who has migraine. As a writer and word-nerd, I began using the word as soon as I learned it, happy to find a succinct replacement for a four-word phrase. Then I learned that migraineur is a controversial term.

Here’s the uproar: some people believe that if I call myself a migraineur, I identify first and foremost with migraine rather than with anything else in my life. To them, it’s an indication that my identity is wrapped up in—or completely dependent on—having migraine. To them, calling myself a migraineur is a sign that I enjoy the benefits of being sick and don’t want to get better.

Ha! I want nothing more than to get better. I see no benefits in being sick. Yet I cannot deny that migraine plays a role in my identity. I don’t want this to be true, but migraine influences every aspect of my life—from the work I do to activities I’m able to enjoy to the city I live in. My identity is not wrapped up in migraine; it’s more that migraine has usurped my identity.

When I first learned the term migraineur was controversial, I didn’t think much of it. After all, people who have diabetes are called diabetics and people who have epilepsy are called epileptics, right? Well, yes and no. It turns out that those terms are also controversial.

People in online diabetes and epilepsy communities say the same thing—they are more than diabetes or epilepsy and do not want to be defined by a medical condition. The word choice also speaks to notions of control. I read an argument from someone who has epilepsy that saying “I have epilepsy” is more active than “I am epileptic” and, as such, implies that she is in control of the illness, not the other way around.

Language we use influences how we see the world—this is one of my core beliefs. Given that and the rational arguments I’ve read, I should prefer “people with migraine” to migraineurs. But I don’t.

Interestingly, though, I don’t call myself a migraineur. I only use it to refer to other people or to groups of people who have migraine. Whenever my personal experience comes up, I always say, “I have migraine” or “I have chronic migraine.” The fact that I am a person is more important than the diagnosis I carry, so I say that I have an illness, not that I am a migraineur.

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I drafted this article through the previous paragraph and then put it aside for more than a year. Six months after writing it, I realized that “person who has migraine” had naturally replaced “migraineur” in my writing. The original argument—that it causes people to tie their identities to having migraine—carries little weight with me. The ideas from people with diabetes and epilepsy were more persuasive.

Ultimately, I decided that it’s not up to me to decide how someone defines themselves. Yes, it’s a little less cumbersome to write “migraineurs” rather than “people with migraine.” But the extra wordiness is worthwhile if it makes some readers feel more comfortable or more empowered. Migraine does enough on its own to erode people’s identity—I won’t use language that could potentially help it along.

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

  • AtmanGotango
    3 years ago

    So….. let me get this straight. “It’s not up to me to decide how someone defines themselves”
    therefore you’re going to yield to their pressure to not use the aforementioned term to refer to yourself?

    In short, it’s not up to you how someone else defines themself, but apparently it’s up to them how you define yourself?

    Don’t bend over backwards to the crybully brigade. The only thing they want is power, and if you give an inch they’ll only come back for a mile

  • Karen Rudd
    3 years ago

    I’ve always identified as a person with chronic migraine. Migraneur seems a mouthful to me, and if by stating I have chronic migraine infers an inner strength to the world at large, yeah me! The end result is the same, I hurt, I have to plan my life around the non-stop attacks and I live for days when I can function, I did the laundry, cleaned the house and took a long hot bubble bath today, so this ranks as a phenomenal day. The point is that I really don’t like to give people that don’t know me power over me by bending me to their preferences and preferences. I bend consistently and constantly to the whims of this disease, so forgive me if I don’t care about their preferences in how I identify with any particular word. I wish you all a pain free hour and {{{{gentle hugs}}}}}

  • Marcus
    3 years ago

    I initially liked the term that seemed to summarize and give an identity to my disease, yes, kind of like diabetic to those who deal with diabetes, etc.
    Then I realized that with the people I interacted with, from my family, close friends, and especially my clients (with whom I no longer regularly interact with, given that I had to retire early, and so sold my practice, after living with new daily chronic migraines for more than 22 years, which has now been designated as refractory migraines), well, the term migraineur meant nothing to them.
    On the other hand, since I had always been open with my family and clients, they knew my changing situation.
    On the other hand, the language change which exerted the most benefit to me personally was when I changed my description from “I SUFFER from chronic daily migraines,” to what I’ve now being saying for the last 7 to 9 years, “I LIVE with chronic daily migraines.”
    Not a cure-all, but a huge change in internal attitude!
    I’m not quite the wordsmith that my wife is, but words, reading and good writing have been with me most of my life. And so, for me, changing from suffering to living has been oh, so helpful.

  • Polly Moyer
    3 years ago

    My sister and I both have to co-exist with migraines and neither of us are keen on the word ‘migraineur’ after my old consultant said (after I mentioned having difficulty sleeping sometimes) ‘oh, you migraineurs are all alike’. My sister was with me – and we are very different – so it made her cross and me laugh. I laughed partly because it sounded silly (I’d never heard this expression before)and partly because it seemed to imply some form of choice. It felt like the consultant was saying something akin to ‘oh you piano-players are all alike in your suffering – and if you’d only stop playing the piano you wouldn’t have this problem.’

    Hmmm, I’m not sure I’m giving a good explanation about this, but her tone was accusatory which I considered ridiculous and which angered my sister. Having said that, other people with migraine can call me anything they like – but if I ask a consultant not to call me a ‘migraineur’ and they don’t respect that request, they won’t get a lovely, glowing feedback review from me.

    My Mum had epilepsy and if anyone said she was ‘epileptic’ she’d give them the Mum-Death-Stare until they apologised. Yet my neighbour’s son has autism and speaks of ‘being autistic’ or ‘having autism’ in roughly equal measure. So although it’s not a personal choice that we have these medical conditions it is our choice about how we refer to them – and if we want to mix it up a bit, rather than sticking to one way only, that’s our choice too.

    I also have to co-exist with Mal de Debarquement Syndrome and always refer to it that way; a co-existent situation. This infers that the condition neither defines or identifies me. Yet it has changed and shaped my life in ways I couldn’t have envisaged. Yes, it takes more words than saying ‘I have Mal de Debarquement Syndrome’. But it’s worth it for the sub-text value 🙂

  • Crystalrz4
    3 years ago

    I AM a Migraineur, just like I’m an Epileptic, an ANIMAL Person, a Dressage Rider/Jump Seat and Rough Rider, I’m a SINGER/SONGWRITER with Albums out, I’m a Wife, Mother and a Grandmother. I am MANY things, and I suffer from many more things than I’ve listed. All of them describe a portion of WHO I am. Am I proud of these things? NO and YES! I’m PROUD that I have managed to live for 64+ years, and having survived migraines for 60 years!

    I am not defined by any of these, but they are all part of me. If you REALLY want to know who I am, then understanding that a good portion of my life is taken up by medical problems, more specifically my migraines, will give you a clue.

    To understand why I have to tell you “No” when you invite me to do things with you, or go places? Then you need to understand that my health issues do not allow me to just JUMP up and take off like I used to, or plan things months in advance, when I have no idea what the next few minutes might bring, especially due to my migraines and their severity.

    The more we get Migraines out of the shadow of shame, or just a headache, or just a woman-thing, the more we bring attention and legitimacy to this life-devouring disease.

    I AM a Migraineur!

  • Liz Flynn
    3 years ago

    I’ve learned that, if nothing else, being a “migraineur” will offer you the opportunity to learn to be open and compassionate toward the suffering/potential suffering of others. I think that a large part of the bias for discounting (or worse) the experience to any degree of people with migraine is that the disease is generally not quantifiable like diabetes, epilepsy, high cholesterol or whatever other undeniable condition. Today too many people think that their views are all important in the world – and wow don’t they share their opinion no matter how shallow or ill-conceived it is. Some are cynical or lack compassion, and others have a narrow pollyanna view that we actualize what we think or fantasize about. Forget them. With migraine (for me anyway) you’re usually screwed if you share about it and screwed if you don’t. I’m now fairly quiet about it unless the situation calls for me to say I get migraines – why bother with the peanut gallery?

  • Conlinr
    3 years ago

    As an RN and an attorney who IS a “migraines”, I think it is appropriate to use the term. Boots every 3 mos, homophobia, N/V, prophylactic meds and obligation meds ARE a fact of life, not to mention the effect on those around me. A diabetic who denies that he/she is a diabetic, in denial and in for a short, miserable life. We need to stop being so PC, acknowledge others may have other needs and let it be at that. After 59 years, I finally found an outstanding neurologist who specializes in migraines and HE uses the term (just as it is in the medical journals.) If it’s good enough for the best, use of the word is good enough for me!

  • ctaylor
    3 years ago

    Many years ago I had a makeup makeover at a fancy salon. It was a gift from someone. As this young girl with a peaches and cream complexion worked on me I happened to mention that I have a complexion that could most accurately be described as “hepatitis yellow”. Her response was, in a very superior tone, ” We don’t call it hepatitis yellow we call it a light olive complexion.” My immediate response was “Well, you aren’t wearing it honey!”

    In my opinion the same applies here. Some days I am a person with chronic migraines and others I am a migraineur.

  • wendy
    3 years ago

    As this disease affects decisions you make in every part of your life, if you want to use a word akin to someone with dinner using “diabetic” who cares? It’s not if you will no longer have migraines if you stop calling yourself a migraineur. Acknowledging this disease as part of your life enables you to look for ways to mitigate it’s ill effects.

  • Conlinr
    3 years ago

    Agreed 100%!

  • Brooke H moderator
    3 years ago

    Hi Wendy,

    Thank you for sharing your perspective on this debate! It sounds as though using the term migraineur really helps you validate the impact migraine has as well as seek out tools and treatments for coping. That’s great! We appreciate you being part of the community!

    Best,
    Brooke (Migraine.com team)

  • penina
    3 years ago

    First, I respect anyone’s personal preferences for what they what to be called and call people by whatever their preference is. This Issue seems to be related to the person first language issue. I don’t buy into the arguments that identity first or identity language in any way makes the person the condition or disability. I think person first is frequently awkward and that requiring it makes for repetitive writing or speaking. And to paraphrase what someone else originally said if others need to be reminded that we (those with disability or in this case chronic illness) are people our problems are a lot bigger than language. The word migraineur simply means someone who has migraines, I don’t think words like that make the illness the sole identity, all of us have many words like that which describe us: brunette, Jew, misanthrope, bibliophile, polymath, lawyer etc and all of them describe a person with a particular characteristic.

  • Luna
    3 years ago

    I have used that term some in the past but most people (outside of this website) had no clue what I was saying so it didn’t save words. I agree with Elizabeth that it “sounds pretentious and silly”.

  • Luna
    3 years ago

    To clarify I really don’t care if people use the term or not about themselves or me. I would use migraineur more because it is convenient but people just look at me and say “what is that”. Also half the time I forget how to pronounce or spell it. I definitely am a daily migraineur.

  • Elizabeth Roberts-Zibbel moderator
    3 years ago

    I have been thinking about this since you first mentioned in one of your posts that you were conflicted about the word, and I agree that it functions as a label that tends to wipe out the rest of one’s identity. I think even just over the past couple of years, language of disorder / illness has evolved. I would no longer say “X’s classmate is autistic,” using instead “has autism.”

    Another problem I have with “Migraineur” is that I’ve never known how to pronounce it! Having taken so much French I hear it as “migraine-EURRE” in my head which sounds pretentious and silly. I’m very happy to just leave it behind!

  • Colleen Meegan
    3 years ago

    As a person who also speaks French, “migraine-EURRE” is correct. However, as a woman, I should be called a ‘migraineuse.’

    Having said that, as a healthcare professional, we have gotten away from labeling our clients. We have begun calling “handicapped people” “people with disabilities.” As some have noticed, many of the writers here either DO or DO NOT define themselves as their disease. That’s your call, & I respect your choice. As a healthcare provider, I will always call “migraineurs” “people with migraines.”

  • Brooke H moderator
    3 years ago

    Hi Elizabeth Roberts-Zibbel

    Thank you for taking the time to share! I chuckled imagining your French pronunciation of migraineur! It does make it sound very formal 🙂 You make a great point, that many individuals prefer not to be so closely labeled with a health (or mental health) condition. It is interesting to notice the trends in the language of those suffering versus the language of the medical community. I thought you may also appreciate this brief article on the topic: https://migraine.com/blog/who-are-we-anyway/ – if you haven’t seen it already. Thank you for being a part of the community!

    Best, Brooke

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