We Need to Talk About Migraine Stigma
The first day I set aside to write this article, I instead spent curled up on my couch, in the dark, with Netflix playing softly in the background.
I had a migraine, and it made writing impossible. Really, it made it impossible to do anything more than lie under my weighted blanket and shuffle back and forth to the kitchen for seltzer.
If you’ve never had a migraine, it might seem surprising that a headache could knock me down so hard. But migraine is so much more than a headache. It’s a serious medical condition that affects about 15% of American adults, according to the Centers for Disease Control and Prevention (CDC).
Despite how common migraine is, there are a lot of myths and misunderstandings about the condition—what it looks like, who gets it, and how people manage it.
I talked to a few fellow migraine patients and experts about the migraine misconceptions they want to clear up.
It’s not just a headache.
When many people think of migraine, they picture a really bad headache. But it’s so much more than that.
Kelly Dunn is a licensed clinical professional counselor in Chicago, where she works with clients who have chronic illnesses like migraine. She gets migraines herself and points out that the way we talk about migraine matters.
“Language around headache disorders is oftentimes used quite flippantly,” Dunn tells SELF. “It perpetuates a belief that it’s not a big deal.”
Jessica Ailani, M.D., has to clear up this misconception frequently, sometimes even with her patients’ families. She’s a neurologist and the director of the Medstar Georgetown Headache Center in Washington, D.C., as well as a professor of clinical neurology.
“If you’ve had a headache before, it doesn’t mean you can relate to someone who has migraines,” Dr. Ailani tells SELF. “It’s not just a headache; it’s a cognitive disease.”
Along with head pain, migraine can cause nausea and vomiting, dizziness, difficulty thinking, trouble remembering words, and even irritability. (Sometimes being a little irritable or short-tempered is my first sign to take migraine medication.)
Not every migraine is the same.
The different ways migraine presents can create challenges for diagnosing—not to mention treating—the condition.
For Alisa Laska, an interior designer in Madison, Wisconsin, migraine shows up primarily as nausea and cognitive changes like memory loss, which made getting a diagnosis a challenge.
“I did not have extreme pain—I would get a headache, it could be extremely minor, and sometimes I would have no headache,” she tells SELF. “My doctors could not figure out what was wrong with me.”
After two months of testing, Laska was diagnosed with migraine, but that was just the first step—she still had to figure out how to manage and treat these episodes, while juggling a variety of emotions that can accompany all of these new hurdles.
“The memory loss thing has been my biggest struggle,” she says. “I can deal with pain, I can handle it, but losing my brain is tragic.”
There is no “typical” migraine patient.
Stigma and stereotypes can also make it harder to get a diagnosis. For instance, there’s often a perception that migraine is something that only affects wealthy white women—and that it’s merely an inconvenience rather than a true neurological condition. These migraine misconceptions can deter some from seeking treatment if they don’t see themselves as the typical migraine patient.
These assumptions are also simply incorrect. “[Migraine] is actually more common in the underserved population,” Dr. Ailani says. According to a 2018 study in the journal Headache, there is a higher burden of migraine in people with annual family incomes below $35,000. Across the U.S. population, research suggests that the prevalence and frequency of migraine increases as people’s incomes decreases.
The reasons for the disparity aren’t well understood. Some researchers theorize that increased life stressors may trigger more migraines. It’s also possible there’s a circular phenomenon: Migraines cause missed time from work and decrease earning potential, while also costing a significant amount of money to treat. Getting a diagnosis—not to mention finding a treatment plan that works—often requires visits to a specialist, which can be expensive.
“A specialist copay can be $40 to $60, for most insurance,” Dr. Ailani says. “That can be a little bit too high.”
Without insurance, the situation can be even worse. It’s no wonder then that patients without insurance are less likely to receive proper treatment for migraines. These patients are also more likely to rely on emergency rooms for care—rather than a primary provider or specialist.
Even with insurance and a treatment plan, visits to the emergency department can be necessary—and expensive. A few times a year, I find myself in the emergency department to receive intravenous drugs when my at-home prescriptions aren’t working. I’m fortunate to be insured, and I can still spend more than $1,000 for a few hours hooked up to an IV.
Migraine can cause us to miss certain moments—but that doesn’t mean we don’t care.
Between the pain, vomiting, light sensitivity, and brain fog, it’s no surprise that migraines can force people to miss out on a lot of things—things they care deeply about.
It’s not just the migraine episodes themselves that can cause people to miss out on life. Sarah McGinnity tells SELF about the things she’s had to give up to avoid getting a migraine in the first place.
She lives in the Kansas City area with her husband and three kids and comes from a family of migraine sufferers. Over a lifetime of migraine, she’s learned her triggers—certain foods, conditions, or circumstances that are likely to cause an attack. Some of McGinnity’s triggers, like alcohol and chocolate, can be disappointing to miss out on.
I’ve actually been using the time at home during the pandemic to try to identify if alcohol is one of my triggers too. It’s been easy enough for me while I spend my evenings on the couch in my apartment. It can be a different story when it means skipping toasts at a wedding or glasses of wine at girls’ nights.
Dunn works with her clients to help identify triggers and also to make value judgments here and there—because sometimes, for some people, it’s worth risking a migraine trigger to live your life.
McGinnity makes these choices all the time: postponing a trip to Napa for a future when her migraines might be more manageable, skipping a piece of cake at a family birthday. She always travels with abortive migraine medication (the type that works to stop a migraine currently in progress), but these medications aren’t meant to be taken too frequently.
“Sometimes I can go to a wine night,” McGinnity says. “But if it’s near the end of the month, I have to decide if I can use a pill on it.”
It’s not as easy as just taking a pain reliever and getting on with your day.
Migraine can be tricky to treat, as pretty much anyone with migraine can attest. While there are a variety of medications approved for migraine treatment—as well as a litany of drugs used off-label for migraine relief—finding what works for you can be a long, frustrating, and expensive process.
Dr. Ailani notes that it can even be frustrating as a physician to work with a patient on finding treatment that’s right for them, only to learn that their insurance doesn’t cover it. I personally am taking a migraine medication that, before I hit my insurance deductible, costs more per month than my entire January stimulus check. There are coupons from the brand’s manufacturer that cut down on the cost quite a bit, but I didn’t always know how to take advantage of that.
What people don’t often realize is that your migraine treatment plan can include an arsenal of treatments—some oral, some injectable, some prescription, some over-the-counter—as well as minor and major lifestyle changes. And even once you’ve found a treatment plan that works for you, it’s unlikely that you’ll eliminate your migraines entirely.
Many migraine sufferers would appreciate support even more than suggestions.
It’s not uncommon for well-meaning friends and family to suggest remedies, treatments, and preventive measures to the migraine sufferers in their lives. People want to offer solutions when someone they care about is in pain, I get it. The thing is, most people with migraine have tried just about everything they can get their hands on.
Dr. Ailani lists some of the frequent suggestions she’s heard others recommend: special salts, a particular ear piercing, ginger, and even stopping all medication. These were all things I’ve heard or read online too.
McGinnity says she often gets the advice to take over-the-counter painkillers and drink a soda. While both pain relievers and caffeinated drinks can sometimes help with migraine, most migraine sufferers already know about and use them frequently.
If someone you know deals with migraine, Dunn suggests saving the suggestions and instead offering support in other ways—like learning more about the condition or their unique experience. (Reading this is a good start!)
“A lot of these comments come from this lack of understanding about what it means to have a chronic illness and what the experience of having migraines is like,” says Dunn. “If someone in your life has chronic illness, ask questions, ask how you can best support them.”
Migraine can be highly variable, and everyone experiences it in their own way. Regardless, it’s almost never “just a headache”—there’s much more happening under the surface.
If you have migraine, know that you’re not overreacting and you deserve to get relief. If someone you love has migraine, be curious—not judgmental—about what they’re going through.
- This Is What Migraine Really Does to Your Life
- The Winding Road to Migraine Treatment
- 9 Ways People Are Getting Migraine Relief These Days