Changing the way we talk about Migraine

I’ve been thinking a lot about why stigma is so insidious and what we can do about it. A big part of the problem is in the way that everyone talks about Migraine. The way we talk about Migraine influences how we and others view the disease and we’ve been doing it incorrectly.

We talk about Migraine as if it is something that comes and goes, like a headache. We’re all guilty of saying things like…

“I’m getting a migraine.”
“The migraine is over now.”
“My migraines last for days.”
“Bright lights trigger my migraines.”
“How can I stop a migraine?”
“I’m getting too many migraines.”

These statements leave the impression that Migraine is periodic problem. People assume that when we are “migraine-free” we are as healthy as anyone else. Yet we all know this isn’t true. Migraine is a genetic neurobiological disorder with no cure. It never goes away.  Yet we talk about it like it has a beginning and an end. There may be a lucky few who are able to achieve remission by controlling trigger exposure or through preventive medication. Yet the fact remains that Migraine is always present. To refer to the episodes of pain, light and sound sensitivity, nausea, and cognitive problems as “a migraine” simply isn’t correct. There is no such thing as “a migraine”. Patients with Migraine disease experience episodes during which they experience the four phases of an acute attack.


Let’s look at this idea another way. We wouldn’t say someone with diabetes is “having a diabetes” when their blood glucose is too high.  And we’d never refer to a seizure as “an epilepsy”.  We’d say, “That person has epilepsy so they will have seizures sometimes.” Someone with cardiovascular disease can have a “heart attack” but we don’t call it “a cardiovascular”. By calling our periodic attacks “a migraine” we perpetuate the stigma that harms us all. Our disease will never be taken seriously if we can’t even describe it accurately.

This is an example of how I explain Migraine to people:

“I have Migraine disease. That means that periodically I experience episodes called ‘migraine attacks’ (or ‘attacks’ for short). During these attacks, I have trouble tolerating sensory input because all my senses are heightened to the point that touch, sound, light, and smells are painful. I have difficulty comprehending and communicating. My speech may be garbled or I might forget common words. My reflexes slow down, so it is not safe for me to drive or operate heavy machinery. Sometimes I get blind spots, blurred vision, flashing lights, or zig-zag lines in my vision that are called auras. I also experience excruciating headache pain on one side of my head.  Any movement makes it worse. Sometimes I get dizzy, feel nauseous, and even vomit. All of these symptoms are part of the “attack”. Attacks come and go. I have medicine that limits their frequency and other medicine that helps to shorten the attack. They can be as brief as 4 hours or go on for days. Because I have this genetic disease, I must be careful to avoid the things that set off attacks. These are called ‘triggers.’  Triggers can be almost anything from a change in weather, to bright or flashing lights, loud noises, strong smells, and often ingredients in food or drink. When I make a request of you, I’m not trying to be a ‘party pooper’. I really do need to avoid trigger exposure if I am going to feel well enough to join in the fun.”

When I started explaining Migraine in this way, I discovered that people took me a lot more seriously. They understood and accepted that this type of condition could easily disable someone to the point they could not work. The way we speak about Migraine does affect how we and other migraineurs are treated.

So let’s review…

  • Migraine is the genetic neurological disease that makes a patient prone to episodes or attacks.
  • Attacks include the four phases we experience: prodrome, aura, headache, and postdrome.
  • Triggers are the things in our environment that can set off an attack.

We need to adjust our vocabulary so that others will better understand and empathize with us.

Instead of saying… Try saying…
“I’m getting a migraine.” “A migraine attack is starting.”
“The migraine is going away.” “The attack is almost over.”
“______(trigger) gives me migraines.” “_______(trigger) will set off an attack.”

It is going to take a lot of time for all of us (including our doctors) to change the way we talk about Migraine and its episodic attacks. It will feel awkward for a time. But it is essential that we change our terminology so that the general public has a better understanding of what it means to have Migraine disease. By changing the way we talk about Migraine, people will learn:

  • Migraine is a disease that is lifelong and incurable. Remission is possible for a limited few, but many people never recover. There is a subset of patients who experience attacks every single day for years without relief.
  • It is characterized by periodic episodes of moderate-to-severe one-sided headache accompanied by hypersensitivity to light, sound, smell, and touch.
  • It can also include nausea, vomiting, dizziness, vertigo, garbled speech, an inability to communicate verbally, and one-side reversible paralysis.
  • Patients experiencing an attack have slower reflexes and difficulty with cognitive functioning. They should not drive or operate heavy machinery during an attack. Nor should they be expected to perform tasks that require concentration, focus, communication, or critical thinking.
  • Just before, during, and after an attack, patients may experience mood swings, cry easily, or become irritable. This is because brain chemistry is seriously altered at the start of every attack. It can take hours or days for the brain to normalize again.
  • Patients with Migraine disease are at greater risk of developing cardiovascular disease. If they have Migraine with aura, they are at increased risk of stroke. Women who continue to experience attacks after menopause have double the risk of developing Parkinsons.
  • Patients with Migraine often experience comorbid conditions (occur at the same time) such as Depression, Anxiety, Sleep Apnea, Fibromyalgia, and many more.
  • Intelligent, average people have Migraine disease. It is not a mental illness or moral failure. It is not caused by lifestyle choices. Patients with Migraine disease are born with it. They didn’t choose to have this disease and would get rid of it if they could. Many must take dozens of different medications in order to manage this disease. Rarely are the medicines they take addicting. However, they do have side effects such as weight gain, cognitive slowing, digestive problems, etc.

Help fight stigma by accurately speaking about Migraine disease and its characteristic attacks.

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

View Comments (16)
  • Holly H.
    4 years ago

    Great line of thought and speaking suggestions. It’s been 2 years now since migraine became non-ending (5 years at this level); and three months ago, I moved into a large senior towers facility. This is a place where everyone knows everyone else’s everything. So when I do move about the common areas, folks ask why they “hardly ever see me.” This is a specific age demographic who have “never heard of such a thing.”

    Thankfully, over time several have wanted to gain understanding in that I “keep a headache and it is just a matter of how functional I am right now.” And by seeing how I look and act, or by asking me, that I’m “still in that headache spike.” It’s exhausting, and comments, misinterpretations, and/or negative assumptions can be an even further drain on small resources — but those who are striving to track with me are a blessing. Incorporating your info and verbiage will be helpful.

  • Janet
    4 years ago

    Excellent article!!! If my family cared enough to read this, I’d send it along. Unfortunately I don’t have a support system….those closest to me think migraines are headaches I can control. I’ve given up and seek counseling once again to channel my anger.

    Thank you for this insightful article Tammy.

    Blessings, Janet Jones

  • Lizzie
    4 years ago

    Really interesting. Excellent.

  • BethBlue
    4 years ago

    Tammy, this is brilliant. I’ve been a member here for over two years, and this is, by far, the most intuitive and thought-provoking article I’ve seen here. Bravo for characterizing the mysterious phenomenon with which we all struggle in terms that truly make sense. I believe we can all understand the stigma surrounding migraine disease, and the difficulty we experience when attempting to explain it to others. If we adopt your explanation, I think we’ll all fare much better, especially when we are trying to qualify for employment and insurance benefits. What about it, Migraine.com? Let’s use Tammy’s verbiage to improve eligibility across the board!

  • Rosiebelle
    4 years ago

    What an eye opener! Tammy is right. It isn’t ever over. I’ve had a migraine continuously for the past 5 days. I have a migraine attack like this every 10 days or so and have had them since I was 12! I go to work except on the very worst days because I’d be out of work at least 1/2 the month otherwise. I was in so much pain today and even though I told my co-workers they looked at me like ” oh, that again” ugh!! I took medication and tried to do my best but the headache kept on and on and on. Explaining it as an attack makes people view it as it is ; A reoccurring condition that isn’t cured just treated temporarily. Great article!

  • HereWeGoAgain
    4 years ago

    Thank you, Tammy, for articulating so clearly ALL the phases and symptoms we with migraine disease/disorder deal with day in and day out. “Stigma” is a keyword, and something we all face, when friends and family roll their eyes, thinking we are “playing the ‘migraine card.'” Sadly, trying to educate them is sometimes seen as looking for even more attention, but printing out these articles or emailing them is the best way, for me anyway, to give them the whole picture.
    I agree with Maggie H. that migraines are not always hereditary. I never had a headache of any kind until I was 33 years old. There were no migraines in any of my prior relatives. However, I don’t feel, in my case, it is worth the argument when overall migraine education is what we are really seeking.
    I was stunned to read in the article, the connection between Parkinson and postmenopausal women. I am 60 years old and frankly have enough health issues already without having to fear that as well. lol Would you please tell us where to find more information on that subject?

  • Sheila K.
    4 years ago

    Thank you, Tammy. A total thumbs up on this article. I have Classic Migraine (Aura without headache). Stigma has done more damage to my quality of life than I can mention. I have been begging for advocate leaders and the AMF, to change the dialogue. Awareness begins at base camp with major online sources of information. The same ones that as for donations to help raise awareness. Your article is wonderful and very appreciated. Hopefully, soon, society will learn that a person can become disabled without the headache. In fact a migraine diagnosis, begins with other symptoms, that might possibly include a nasty headache. That, is the real story of migraine. I have Silent Migraine. It is very, very rare when I get a headache. I don’t believe my condition is rare and I believe there are many others. Silent/Acephalgic migraine is a sneaky invasive creeper when doctors and society are clueless. By the time, you stop doing the thing you love most, you’re already chronic.

  • Ellen H
    4 years ago

    I would like to suggest a word change in the way we describe Migraine. Here at migraine dot com, I see people using the word “disease.” I would like to suggest using the word “Disorder.” To me, disease is something “catching,” like Ebola or Flu or Diphtheria, and it doesn’t seem to fit the description of Migraine. I often say to people, “Migraine is a Neurological Brain Disorder.”

  • Jill M.
    4 years ago

    Yes, I agree wholeheartedly with using disorder rather than disease. I also think of disease as something contagious, or being “sick”. A disorder is a disruption of normal physical or mental functions, which seems to be a great description because during a migraine attack, our brain functions are definitely disrupted and “out of order”!!

  • Luna
    4 years ago

    Ellen, I’m with you about using the word migraine disorder rather than disease. Also, using “brain dysfunction” seems to help people better understand what migraine is, especially when trying to describe the changing aura I live with daily. I look fine and can even converse to a point then the brain dysfunction starts showing.
    People seem to relate better to the words disorder and dysfunction to get that it isn’t just a headache.

  • DinaMay
    4 years ago

    I like the idea of changing our language so that others will change their attitudes. As it happens, though, in my experience people only listen to the first 10 words, so a lengthy (and beautiful) explanation such as yours would float in one ear & out the other. What I need is a really super concise description that presents the same info but in fewer than 10 words. 🙂

  • Ellen H
    4 years ago

    I don’t think I can get it down to 10 words, but this is what I tell people, and when I do, they look at me as if I were evil, and they can’t wait to run the other direction…….>>>

    “Unless you have been hit over the head, Migraines are a Neurological, Brain Disorder. They are Genetic, and the Migraine Gene sits on Chromosome #19, next door to, or close by to, Epilepsy.”

    If you don’t count the verbs, prepositions, and conjunctions, that whittles it down to about 10 impact words. It is often necessary to speak firmly and swiftly.

  • Maggie H.
    4 years ago

    Would someone please make the correction that migraine headaches are not ALWAYS a genetic disease? I know that, because there is not a history of migraines or even chronic headaches in my family for over 3 generations, (I’m 64 yrs. old); I did not experience headaches as a child. My migraines are caused by a near fatal auto accident in 1984 and that has been stated by so many doctors, neurologists, chiropractors, MD’s, and other specialists that I am prone to accept that fact. Yet, as severe as my migraines are, I don’t consider them a “disease” – they are the result of a horrible accident and I have learned to cope with the dietary changes, triggers, other situations that I cannot control in order to make my life more productive. Sandy, you are so right – many ER’s and MD’s do not understand migraines – I was hospitalized for what was thought to be a stroke “due to age”, yet it was a hemiplegic migraine that my chiropractor treated by adjusting my skull via the roof of my mouth after I was discharged! I like the explanation in the article except for the reference that it’s genetic, because I don’t believe that’s always applicable. Input from anyone who has had the same experiences is so welcome. Thank you for this site – it is very encouraging and informative.

  • Luna
    4 years ago

    Tammy, what an excellent article. It articulates the subject very simply and should be easy for others to understand. I plan to (and I don’t think you mind) print up a good portion of this article and maybe add a few comments from other articles to hand out to people that I want to really get it. Some people really do want to understand but I am not always very capable of explaining. I will give credit due to all authors and the web site.

  • 55yrMigraineur
    4 years ago

    I am going to print it out and carry it with my medical information. I am one of the lucky people whose primary symptom is “confusion,” meaning that communication with me is difficult. I know what is happening, and my magic drug is always within a minute of me; I know that my symptoms are stroke-like to people who don’t know me; I see this paragraph as a bridge to help if I need it one day. Thank you!

  • Sandy
    4 years ago

    thank you. since coming to this website, I have started using, my migraine disease. every time I go to the dr, urgent care, emergency room, they only ask me about my pain level. I inform them of the “other” symptoms as well, bc they are just as debilitating as the pain. Having them daily, I have had to education my family, friends, and other dr’s I see (waiting rooms are very painful even with sunglasses and earplugs). it is still a work in progress.

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