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How we talk about health conditions matters. Who wants to be that person, blurting out something awkward or clueless to someone, with say, cancer, or telling someone with a mental illness that they look “just fine”? That’s true for migraine too. While a lot of people know that this neurological disorder can cause head pain, they often don’t really get what it entails or make assumptions that simply aren’t true. (For one, a mind-numbing ache is only one of a multitude of symptoms.)
We asked people living with the condition and migraine experts to share some of the biggest misunderstandings surrounding it, why specific language matters, and what you can do to help.
The word “migraines” can be misleading.
Turns out, a single letter can make a big difference when it comes to this condition. As the American Migraine Foundation (AMF) points out, it’s better to say someone has “migraine”—singular, with no article, the way you’d typically refer to a chronic illness that never goes away (like, say, asthma)—rather than “migraines,” which implies they come and go.
“When I talk to patients about the difference between migraine and migraines with an ‘s,’ it really is a light bulb moment because they start looking at their disease very differently,” Amaal J. Starling, MD, a headache specialist and neurologist, associate professor of neurology and researcher at Mayo Clinic, tells SELF.
While people tend to think of migraine as something that’s there when symptoms are present but gone as soon as the pain disappears, “the truth is the exact opposite,” Dr. Starling says. “It’s a genetic neurological disease that is present in the brain every single day, and on certain days you may have attacks and on other days you may not.” Bernadette Gorczyca, 37, who’s been living with the condition since she was a child, says a lot can happen in addition to her attacks—she gets brain fog, nausea, and fatigue too.
“Sometimes the hangover the next day [following a migraine attack] is just as bad and just as debilitating,” Molly Apfelroth, 32, an art director living with migraine, tells SELF. “[My] migraine attacks last days—plural. The day before, the day(s) of, and the day after are all part of the attack.”
It’s better to call them “attacks,” not “headaches.”
The AMF also suggests avoiding the term “migraine headache” because there are so many other symptoms—meaning calling it a “migraine attack” is more accurate. Using the correct terms in everyday speech can help you avoid trivializing the condition, Elizabeth W. Loder, MD, MPH, vice chair for academic affairs in the department of neurology at Brigham and Women’s Hospital, tells SELF.
Downplaying the impact of migraine attacks can have real-world ramifications. Some people may delay getting treatment because they don’t think their symptoms are serious enough—which is something that Gorczyca went through. By the time she was a young adult and working as a teacher, she was having migraine attacks more than 25 days a month—which she still considered (somewhat) normal. “I just thought, This isn’t something you go to the doctor for. I equated it with something simple [and] acute. I had no understanding of what I was dealing with,” Gorczyca says.
A lot of people might also feel embarrassed or ashamed of the way they feel. That’s because, according to Dr. Loder, people with migraine might see their symptoms as a weakness. This all can contribute to “a huge barrier in accessing care,” Dr. Starling says. One 2021 study published in the journal Headache found that less than 12% of people with migraine made it through the three main steps to better care—consultation, diagnosis, and treatment.
How you can help.
Supporting someone can be as easy as acknowledging that migraine is more than a headache, Dr. Seng says. By doing that right off the bat, you’re validating a very real, painful experience that people have to deal with every day, experts say. Beyond that, here are a few things experts say can make a difference:
Migraine isn’t a sign of weakness or an excuse to cancel plans, Dr. Loder says. There’s a misconception that attacks are somehow controllable. If someone is having one, don’t say, “What did you do? Are you under any stress? Did you have too much coffee?” These episodes are caused by a lot of factors, and people are rarely triggered by a single thing. “[A person] may have done nothing ‘wrong’ at all and [they] still have symptoms,” Dr. Loder previously told SELF.
It’s easy to think that if someone shows up at work, a dinner, or to pick up their kids, that they’re “okay.” The reality is that a ton of folks push through no matter what, Dr. Seng says. “These are people who have unpredictable, painful attacks and other symptoms that interfere with their ability to do pretty much anything,” she says. “And yet they have families. They have jobs and careers and lives.”
That’s because migraine, as we said, isn’t just a single episode of obvious pain: Symptoms come in stages. For example, some with the condition experience aura—where their speech and vision are impaired—right before or alongside an attack, and for some folks, it’s their only issue. (So while your friend might not be clutching their temples in agony, they could actually feel woozy or dizzy.) Similarly, they might be reeling from a severe episode they had days or weeks ago, alongside body aches, dizziness, and fatigue—often called the postdrome stage. Basically, it can look superintense to the outside observer—or it might look like nothing at all. (It’s impossible for anyone besides the person with migraine to know.)
It can be helpful to know what triggers someone’s pain—and accommodate those situations. Maybe you can suggest hanging in a spot without bright lighting or dining at a quieter restaurant, Dr. Starling suggests. Or, perhaps, you make loose, go-with-the-flow plans knowing that things may need to switch up at the last second. That’s because, again, attacks can be wildly unpredictable.
Simply talking more openly could help, Apfelroth suggests. “I’d love for migraine attacks to become as mainstream as cramps or a sinus infection,” she says. If people with the condition feel like they have the space to be more vocal about what they’re going through, others might feel inclined to share as well—and it could potentially lead to better care all around, the AMF says. (Something Apfelroth also agrees with.)
When it comes to chronic health issues, try to give people grace—and that includes yourself if you have migraine. Being intentional with how you speak about the condition can make a world of difference for someone in pain. And it doesn’t have to be hard! Using your words to help rather than harm can sometimes be as easy as removing a single letter.
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