Migraine - What Should We Call It and Those Who Have It?

Teri Robert @trobert Health Guide
  • Words have a great deal of power, including words used when discussing Migraine and those of us who have it. The potential implications of words used in medical language need to be carefully considered because they impact how patients, the public, and health care professionals respond. In an ideal world, the language used to discuss Migraine should:

    • be scientifically accurate,
    • reduce the stigma associated with Migraine,
    • help avoid bias and misperceptions about Migraine,
    • allow those of us with Migraine to have our Migraine-related needs addressed properly and adequately, and
    • help health care professionals communicate clearly with the medical community and policy makers.

    A paper has been published in the journal Headache on this topic, "Naming Migraine and Those Who Have It." The paper is based on the work of a consensus panel of physicians, academics, advocates, and patients with our perspectives, experiences, and knowledge about Migraine. I was privileged to be a member of that panel. The panel considered three questions:

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    1. What is Migraine: an illness, disease, syndrome, condition, disorder, or susceptibility?
    2. What ought we call someone with Migraine?
    3. What should we not call someone with Migraine?

    Although we didn't arrive at a consensus on these questions, the responses were valuable and were summarized and analyzed.

     

    The panel:

    • The ages of the panelists ranged from 25 years to 69 years of age.
    • The panel included eight women and seven men.
    • Seven panelists were physicians, eight were non-physicians:
      • Coordinator (non-voting moderator, Palatucci advocate, Academy of Neurology, at-large member of the board of the American Headache Society [AHS])
      • AHS Executive Committee member
      • Headache specialist, non-neurologist, National Headache Foundation board member
      • Headache specialist, psychiatry background
      • Epidemiologist
      • Patient advocate
      • Journal editor
      • Professor of sociology
      • Professor of philosophy
      • Professor of rhetoric
      • Neuroscientist
      • Family practitioner, non-expert
      • Member American Academy of Neurology Practice Committee, not practicing headache medicine
      • Patient – chronic migraine
      • Patient – menstrually-triggered migraine
      • Patient – episodic migraine

    Question #1: What is Migraine: an illness, disease, syndrome, condition, disorder, or susceptibility?

       Panel responses:

    • illness: Least favored among the panelists
    • disease: Most favored among the panelists
    • syndrome: Many panelists would limit the use of "syndrome," but some felt it appropriate since the pathophysiology of Migraine isn't fully understood, and there is no definitive test to diagnose Migraine.
    • condition: Second most favored among the panelists. Received support from some panelists with some commenting that the term is inoffensive and neutral.
    • disorder: Was less popular among the panel than "condition," with some panelists feeling that it sounded psychiatric.
    • susceptibility

    Question #2: What ought we call someone with Migraine? Migraineur, person with Migraine, Migraine sufferer, Migraine patient, person living with Migraine?

  •    Panel responses:

    • Migraineur: The panel was equally divided between Migraineur and person with Migraine. Some felt that the word seemed too sophisticated and might not be understood by the public. Some also felt that it confuses the disease with the person.
    • person with Migraine: The panel was equally divided between person with Migraine and Migraineur.
    • "Migraine sufferer" got little support from panel members.
    • Migraine patient
    • person living with Migraine

    Question #3: What should we not call someone with Migraine?

    Panelists suggested these terms to be avoided:

    • sufferer,
    • Migraine victim,
    • borderline (psychiatric label),
    • Migraine personality (same),
    • anything with psychiatric connotation,
    • medication overuser (blames the patient), and
    • chronic headache patient.

    Additional points discussed by the panel:

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    Regarding the phrase "Migraine headache,"

    "The panel also unanimously agreed not to use “migraine headache” unless the pain is specifically singled out from the rest of the migraine symptom complex."

    The word "sufferer" was rejected because suffering is subjective and cannot be analyzed as symptoms can.

     

    Panelists agreed that any language used in discussing Migraine should have no psychiatric connotations or any connotation that could be perceived as blaming the patient.

     

    Summary and comments:

    We too often don't consider the power of words. I postulate that in today's society of increased communication - particularly with the proliferation of the internet and social media - that words are more important now than ever before.

     

    Migraine is decidedly misunderstood, surrounded by myths and misconceptions. Migraineurs (my preferred term) experience the stigma of Migraine, which has been shown to increase the burden of living with Migraine. We must carefully consider the words we use and the context in which we use them. Beyond the words themselves, we need to consider the connotation of those words and the perceptions conveyed by them.

     

    We Migraineurs need to be aware of these issues with words ourselves and choose our words carefully. If we want others to understand Migraine, we must speak of Migraine in terms that lead to better understanding and less stigma. Certainly, if we don't do this ourselves, we can hardly expect others to do so. For example: I cringe when I hear or read someone referring to a Migraine as a "headache" or even a "Migraine headache" because the term "headache" is so inadequate and (in my opinion) not entirely accurate. The headache, when there is one, is but one of the constellation of possible symptoms of a Migraine attack. Migraine can occur with no headache at all. Also, I suspect that referring to Migraine attacks as "headaches" feeds the tendency some people have to offer well-meaning, but sometimes irritating advice such as "Try some ibuprofen and a cup of coffee."

     

    What are your thoughts on:

    1. What should we call Migraine?
    2. What should we call people who have Migraine?
    3. What should we not call people with Migraine?

    Please leave a comment and join the discussion!

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    Resources:

    Young, William B., MD, FAHS, FAAN; Kempner, Joanna, PhD; Loder, Elizabeth W., MD; Roberts, Jason, PhD; Segal, Judy Z.; Solomon, Miriam, PhD; Cady, Roger K., MD; Janoff, Laura, BA; Sheeler, Robert, D., MD; Robert, Teri, PhD; Yocum, Jennifer, RN; Sheftell, Fred D., MD. "Naming Migraine and Those Who Have It." Headache 2011. Early View. First published online September 19, 2011. doi: 10.1111/j.1526-4610.2011.01995.x

    Medical review by John Claude Krusz, PhD, MD

     

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    © Teri Robert, 2011. Last updated October 31, 2011.

Published On: October 31, 2011