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Fighting for Migraine

Many advocates and I have taken to heart a new way of speaking about migraine, and so I felt compelled to make a graphic to show a few examples:

fighting-for-migraine

This graphic is based on a powerful article from last June outlining how to talk about migraine by Dr. William B. Young, a specialist at the Jefferson Headache Center and contributor for migraine.com. He said, “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.” He shared the words we can use to shape the way people think about migraine.

The power of words

The community response was impressive. Here are just a few of the comments:

  • “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.”
  • “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.”
  • “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.

You can read the full article and discussion here. Please share the graphic and article this June! Let’s end stigma now!

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
    4 months ago

    Personally, Disorder and Migraines are both words that ring true for my experience.

    Migraine has such a broad spectrum, I find it difficult to implore anyone to limit hirn language regarding the experience, disgnosis, condition, etc.

    I agree there is much power in language, which is why I’d encourage each person to use the words that work for oneself.

    Thank you for the opportunity to discuss this aspect of living with migraine/s.

  • 1jhae3i
    2 years ago

    I say the Mogre monster (Migraine Ogre) has arrived and his length of time here is to be determined!

  • DinaMay
    2 years ago

    It’s worth a shot but I doubt that just changing the way we talk is going to have all the social benefits touted here. I’m old enough to have heard that same argument applied to various groups over the years with limited results.
    For example, when I was a child, it was a no-no to say someone was crippled if they couldn’t walk. Instead we were supposed to say they were handicapped. When my kids were little, the term handicapped had become as much of a no-no as its predecessor and we were supposed to say disabled. But to my aunt who was confined to a wheelchair the word was not the issue. She just wanted easily accessible ramps in place of stairs. By the time my aunt passed away, many public places had indeed become more accessible. But we are still very far from providing equal access. I have seen a similar process in our changing terms for people of color, with some positive social changes. But here too we are all far from equal in various social measures.
    So language change won’t be enough by itself. My experience suggests that instead we should use language as one tool among many. Sometimes I label my problem as migraine because I don’t want to talk about it and I don’t care what people think. This is especially the case when I have a migraine. But after I’ve come back from whatever world I go to in those bad times, I may feel differently. For example, not long after my husband and I moved to an assisted living facility, I had a particularly severe migraine. It caused me to miss supper the day it started and by morning I knew I needed to eat because skipping a meal is one of my surefire triggers. When we got to the dining room I sat at the nearest table to the serving line. Pretty soon someone showed up to tell me I couldn’t sit there because that was HER chair and in fact my husband and I needed to go to different table altogether because this one belonged to this woman and her friends. I wouldn’t move until I had choked down a bit of something or other and went back to bed. By the time I came back to the land of the living I decided to mend fences by apologizing for my behavior, explaining it as due to a migraine. We had a brief discussion of the toll that migraine takes. If my brain fog had totally cleared up, I would have explained the episode as migraine with fibromyalgia (because I either have that or lupus, depending on the doctor). Other options are migraine with Reynaud ‘s or Sjogren ‘s, depending on how much I feel like talking. But in no case would I challenge a potential ally in this fight against stigma based on the language they used. Words and their meanings are not really the important things. It’s attitudes we want to change and specific things in our environments. Specifically I want status migrainus to be recognized as a disability by the medical industry, the insurance industry, and government. If those institutions change to better accommodate ours needs then I don’t care what words people use. Just like my aunt didn’t care what people called her as long as they made reasonable accommodations for people in wheelchairs.

  • Lisa Robin Benson moderator author
    2 years ago

    Hi DinaMay,

    I absolutely love your comment! I agree that words are but one tool. Since I write about migraine it is especially important to me to think carefully about the words I choose. That being said, I think the most powerful way to change attitudes is STORYTELLING. This is exactly what you did in the situation you described above, where you explained to the woman who’s seat you had taken the circumstances that led to that. It also sounds like you did in a way that was considerate of her feelings, which is so important! I also love the story you told about your aunt. You may find value in this article: https://migraine.com/living-migraine/why-you-should-tell-your-story/

    And I definitely agree about not challenging potential allies based on their chosen language. It’s funny, but after we posted this, me and a few other writers here at migraine.com had a discussion on how we feel about the language we choose. We actually all have slightly different preferences, and not all agree 100% with the meme above, and that’s ok.

    Also, I hear you on status migrainus. I will make a note to produce more content on that subject as the awareness isn’t there yet.

    Be well,
    Lisa

  • Tammy
    2 years ago

    Migraine midaswell be a foreign language. Ive been told to my face that a headache shouldn’t make me so sensitive and that anxiety is the real problem. They say I just needed to take better care of myself. Migraine is meaningless, it holds no value. Neurological disease takes headache off the table. This would improve communication and give us a chance to reconnect with family and friends.

  • Lisa Robin Benson moderator author
    2 years ago

    Hi Tammy,

    Yes, when it is described as a neurological disease that definitely can help. Thank you for sharing your thoughts!

    Lisa

  • Tamara
    2 years ago

    I like migraine disorder over disease …… disorder sounds more than something isn’t going right in the body where disease sounds like you can “catch” it or it’s something separate to your body. Migraines are part of my body and soul – not a part I like but they are shaping my life. Without migraines I won’t be the person I am, it is not my entire being but an important piece. And how about migraine syndrome? That is what I normally tell people because it helps to explain the differences between symptoms and severity.

    I don’t see the problem with migraine sufferer or migraineur either ….. do I suffer from migraines – yes …. I am a migraine suffer. And I kind of liked the migraineur because when I first hear it on the forums and articles it made me feel part of a community. it was a term that unified everyone, like I’m Canadian because I live in Canada, I’m a daughter like many people out there, I’m a migraineur because I have migraines.

    I am a person who doesn’t get too caught up on wording though so maybe I shouldn’t be commenting on this.

    Because i have chronic migraines and some level of pain everyday (mostly likely from my neck/TMJ issues causing migraines. I label my severe days as “flares” because the pain is similar but intensified. Those are the days I can take meds, not on the normal pain days, which unfortunately can be 7/10.

  • Lisa Robin Benson moderator author
    2 years ago

    Hi Tamara,

    I’m really glad you commented! If you go to Dr. Young’s original article he explains more on the reasons for choosing the terminology he did, but I really think we are still discussing and evolving the language, so your voice and opinion certainly counts! I agree with Luna on the term “flare” — I think that is apt for many situations.

    Be well,
    Lisa

  • Luna
    2 years ago

    I like the words flares and syndrome. Now if I can just remember them. lol.
    I have found that using the word migraineur makes people ask “what is that”. Opens the door to an enlightenment moment. It is not a headache, it is a whole body event. Courage to us all.

  • Luna
    2 years ago

    I have migraine condition, disease. I personally like the word disorder better. I tell people that I have a neurological brain dysfunction called migraine disorder. My brain definitely dysfunctions and I’m in disorder. I didn’t see any phrase appropriate for when the migraine is active. Would it be appropriate to say migraine attack or migraine episode?

  • Lisa Robin Benson moderator author
    2 years ago

    Hi Luna,

    Dr. Young in his original article uses the phrase “migraine attack” though doesn’t touch on the word migraine “episode.” I personally use attack when I am experiencing the full-blown symptoms.

    Be well,
    Lisa

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