I had my first migraine when I was 10, on vacation with my dad at a resort in France. Being with my dad and his wife always meant pretending to cope, which turns out to be good preparation for life as a migraine sufferer. The migraine got serious while I was trying to drink a Coke float. The fake whipped cream on top, which I would under normal circumstances squirt straight into my mouth, revolted me. I threw up a couple hours later, after waking in the dark, crying. I haven’t had a Coke float since.
Since I was 16, I’ve averaged one full-blown migraine a week. It’s often more, and I usually have a headache at least a few days every week. If I catch it early, sometimes ibuprofen or Excedrin and sleep can work. If I don’t, I take Maxalt tablets or Zomig nasal spray, which burns my nose and makes my entire body sensitive to touch and gives me nightmares, but when I wake up, I’m able to sit up and slouch to the living room. The pain is still there, but it no longer has the raging, demonic quality of a migraine. It’s tamed, like a werewolf becoming a regular-ass wolf that still kinda wants to kill you.
Without prescription medications, I can’t imagine my life. On the rare occasion that I have to suffer through a migraine without them, I spend hours lying on my side in the dark, trying desperately not to move or even breathe, listening to Frasier on Netflix; or sometimes forcing myself to get up and walk around, crying and shivering, trying to make myself throw up through the agony of moving, and get it over with more quickly. My boyfriend can’t even stroke my hair without hurting me.
I’ve tried every class of preventive medication and found none were good enough to make it worth the side effects, which have ranged from feeling sluggish and generally dumb to losing my hair in clumps. I get Botox injections every 12 weeks, which help a bit. I don’t drink alcohol or coffee, but every other trigger that some old guy tells me to avoid seems not to matter. Nevertheless, they persist.
Yet my situation is unimaginably good compared to many, many other women with migraine, because of one key difference: paid leave. I can take a day off when I have a migraine. It sucks, and it makes me a worse journalist—this piece itself has been delayed about two weeks because I’ve had so many migraines—and I feel guilty and anxious every time, but I don’t lose a day’s wages. For millions of women—and migraine affects women at a much higher rate than men—that isn’t the case. They struggle through their work to make ends meet, and they hide their suffering. They go on because they have to.
Migraine is a shockingly common condition, considering how little is known about what causes it (the current thinking is changes in brain chemistry). It is not, as anyone who’s had one will tell you, ‘just a headache.’ It’s a vicious collection of miserable symptoms, which can include nausea and vomiting, obscured vision, tingling in the hands and feet, or even aphasia, the loss of speech. It is often deeply debilitating. Symptoms vary across individuals. Some people don’t even get the characteristic head pain. 37 million Americans suffer from it, with around 2-3 million of those being chronic sufferers, defined as 15 or more headache days a month.
There’s no mandatory paid sick leave in the U.S.. People with low incomes are less likely to have paid leave, and desperately needing each paycheck makes it harder to take unpaid leave. They’re also less likely to have good insurance, or even any insurance, making it harder to access necessary medications and the care of a neurologist. Migraine is also more prevalent among low-income people: 18 percent of women in the United States suffer from migraines, but 37 percent of women with incomes below $22,500 get migraines.
Depending on the severity of the condition, migraine sufferers may be protected under the Americans with Disabilities Act (ADA), meaning employers have to provide reasonable accommodations like a dark room. But the burden falls on individual migraine sufferers to make sure their employers are following the rules: Do they have the resources, and the mental and physical energy, to take their employer to court if their boss won’t provide a dark room for them? A 2012 decision by the Tenth Court of Appeals ruled that a migraine sufferer working in a doctor’s office was not covered by the ADA because her condition was only aggravated by that particular job—essentially, the court was telling her to get a different job that didn’t cause migraines. That decision didn’t mean migraines were not a disability under the ADA, but it did establish a stricter test for proving that an individual’s migraines are disabling.
Migraine sufferers face a similar problem in applying for Social Security benefits. Migraine is not listed by the Social Security Administration (SSA) in its “blue book,” the list of medical conditions that it uses to determine whether applicants for disability payments are eligible. Robert Shapiro, a neurologist at the University of Vermont and a member of the Board of Directors of the American Migraine Foundation, told me that migraine sufferers can be eligible for disability payments, but the condition’s absence from the listing means patients have to show that their impairment is comparable to a condition that is listed; this usually means epilepsy.
The Social Security Administration said in a statement that “Social Security’s medical equivalence rules, specifically as they relate to listing 11.02 pertaining to epilepsy, represent the most appropriate way to evaluate migraine headaches. Although migraine headache is not a listed impairment, we recognize that in some cases, migraine symptoms may persist despite treatment.” The fact migraine isn’t a listed impairment raises the burden on sufferers trying to get disability payments, said Shapiro.
One woman I spoke to has first hand experience with this struggle. It took Jaime Sanders, a mother of three from Fredericksburg, VA, nine years to get full disability coverage for her chronic migraines.
Jaime started getting migraines when she was a child, but once she got pregnant with her third child, at age 24, they started coming once a month or so. During her first trimester, she “spent the entire three months with a migraine every single day.” It wasn’t until 2005, when she was 27, that she was diagnosed as having chronic migraines. That’s when she first applied for disability payments from the Social Security Administration.
Her chronic migraine was at its worst then, she said, when her kids were young. Her husband worked nights, meaning it was up to her to attend parent-teacher conferences, go on field trips, and so on. “I was always the one doing that and I was always doing it with a migraine.”
They denied her “right off the bat.” She appealed, and was denied again. A year later, she tried again, and was denied again. At that point, Jaime turned to a disability law firm, which took her case and got her a hearing before a judge.
That judge, she told me, was “completely unsympathetic” and “very callous.” At one point, the judge asked her why she had her third child if she had migraines, even though, before that pregnancy, her migraines were much less severe, and were manageable with over-the-counter medication—and, of course, having migraines doesn’t disqualify you from motherhood. “All I could do was just kind of stand there,” she told me; “I couldn’t believe he asked me that question.” The judge gave her a partial award, giving her disability from 2007 onwards. It took four years of appeals and another hearing to finally get her awarded disability payments dating back to 2005, and she told me that her depression, anxiety and fibromyalgia also played a role in that decision. Chronic migraine alone wasn’t enough.
After all those years of fighting, of compiling documentation and attending hearings and being denied over and over again, Jaime gets her payments, but she says they’re “a drop in the bucket.” She told me she receives less than $1000 a month. Her husband, a police officer, earns most of the family’s income. She feels guilty for not being able to contribute more, but “he never makes me feel guilty or makes me feel bad or blames me or anything, which I appreciate, because there are a lot of people who don’t have that support.”
Her migraines are better managed since she started seeing a headache specialist, who put her on a regimen of preventive and abortive medications. But the migraines are still there, more than 15 days a month. She writes about her experience with migraines at her blog, The Migraine Diva. And, through it all, every day, she’s still a mom.
“I’ve always had to push through everything in order to get it done, and it didn’t look like I was sick, but I was in the worst pain ever doing these things. I don’t stop being a mom because my head is killing me. That’s one of the things people just don’t understand, we’re basically forced to push through our pain sometimes, because there’s no other options. I can’t call in sick from being a mom.”
Millions of women who get migraines remain in the workforce. And many of the women I spoke to said they go to work even when they have a migraine. Chelsy, who makes around $17,000 a year working at a history museum in Charleston, SC, says she will “usually try to grin and bear it. It’s hard.” Chelsy said she can go home if others are there to cover her shift, but will sometimes “miss work even though I need the money.”
Another woman, Allissa, has “had to blackout my office and crawl under my desk and sleep (like George freaking Costanza) until the ocular hallucinations pass.” Grace, a lecturer at City Tech college in New York, said she could cancel a class, but she’s “never done this. I can’t imagine a scenario in which I would at City Tech, since it’s my first semester here, and I don’t want to give them a reason not to keep me around.” She does not have paid leave, and though she can miss a class in an emergency, it’s “highly discouraged.”
Many women with migraine are also primarily responsible for caring for their children or, in some cases, a parent. Patricia, from Las Vegas, looks after her mother, who has Parkinson’s. She also works from home as a transcriptionist. Her mother also has a back injury, so her “pain, affected posture, and lack of balance creates a challenge for her in performing even simple actions like standing to cook herself a meal, or light housecleaning tasks.” And when Patricia has a migraine, she can’t help out; she feels “helpless” at these times. Allissa, a single mom, now has paid sick leave, but often can’t use it for herself and has to save it for when her child is sick.
It’s not just needing the paycheck that forces these women to work through their pain. Shapiro said there is still a “very high level of stigma towards people with migraines,” particularly from employers, discouraging sufferers from being open with their employers about their condition. A survey of employers in the United Kingdom last year found that only 22 percent thought migraine was an adequate reason to call in sick. Even when employers are understanding, migraine sufferers can still feel anxious about taking time off. Desiree, a grad student from Texas making around $20,000 a year, said that though most of her professors have been understanding, she still feels guilty, “as though people will think I’m faking or making excuses.”
Marie, who lives in Chicago, now works from home but used to work in an office. When she had migraines at the office, she would only leave if “it was absolutely necessary or if a migraine got to the point that it soon wouldn’t be safe for me to drive myself home”:
I worried that my boss would think I was lying or using it as an excuse to get out of work. Besides maybe outwardly shying away from light and loud sounds, there’s no way for me to prove to another person that I am indeed in incredible amounts of pain, and if they don’t suffer from migraines also it can be hard for other people to understand the severity of the situation.
Shapiro said that’s a key problem for migraine sufferers. There aren’t any outward signs of migraine, unless you happen to catch a person mid-vomit. The only way to diagnose migraine is asking people what their symptoms are; there’s no blood test or MRI that will diagnose migraine. It’s also episodic, meaning when you don’t have a migraine, you don’t experience or display any symptoms.
Worse still, migraine sufferers learn not to display any signs of their illness for fear of being thought weak. According to Shapiro, the expectation about pain is that “if you don’t have crying and wincing and carrying on, that your pain can’t really be there.” But that’s “completely contrary” to how migraine sufferers present themselves; instead, they learn to hide it.
Research backs that up. A survey by the Migraine Research Foundation found only 42 percent of workers who have had to miss work for migraine tell their bosses the truth about their condition, quite contrary to the notion that people fake migraines to get out of work. Marie, for example, told me she tries not to mention it to her clients because she doesn’t want it to prevent her getting work. Xenia, who lives in London, says she “wasn’t very open about this issue for a long time, because often people don’t really understand the full extent to migraines, they think you’re exaggerating, or lying to get out of work.”
Part of why migraine isn’t taken seriously might simply be the use of language. The word “headache” is used to denote a minor annoyance—‘this traffic is a real headache,’ for example. Migraines being primarily known as headaches, Shapiro said, “can only devalue one’s sense about whether or not migraine itself is something important.” It’s hard not to notice, too, that migraine isn’t taken seriously and also predominately affects women. Shapiro said migraine was historically seen as a mental condition, “a character flaw, a weakness, typically associated with women.”
America’s private, employer-based health insurance system, and unequal access to adequate and affordable care, also limits many sufferers’ treatment options. Treating severe or chronic migraine requires visiting a neurologist or headache specialist, which costs money. Preventive (daily) and abortive (taken when the migraine hits) medications cost more money. Some treatments that have been shown to be very effective, like Botox injections administered every three months, are several thousand dollars without insurance; if you have insurance with a high deductible, you still might pay hundreds of dollars each time.
So low income women turn to other options. Alissa said her “work insurance over the past couple of years has had high deductibles, so yoga breathing, taking herbs and ibuprofen and putting ice cubes on pressure points is what I do. And crying. A lot.” Patricia said she doesn’t have insurance anymore and can’t access the prescription meds she used to get, so she relies on “massive doses of caffeine” or Excedrin.
The lack of good insurance and access to specialists can mean over-the-counter painkillers are often the only thing that provides relief, but overusing these can make migraines worse, an effect known as medication overuse headache. It’s a vicious circle, one that’s only made worse by the pressure to work. Grace said she gets through a bottle of 100 extra-strength Excedrin every 3-4 weeks. Reducing or even going cold turkey on these medications will eventually improve migraines caused by overuse, but, in the meantime, the pain will get worse. That is an unappealing enough prospect by itself—how are you supposed to go through that if you have to work, too?
The suffering caused by chronic migraines goes far beyond the crushing head pain, the dizziness, the vomiting. They weigh on every aspect of your life. They stop you from cooking, cleaning, bathing. They stop you from seeing your friends, going to concerts, enjoying a day at the beach. They condemn you to wasting hundreds of hours of life in bed, sleeping or just silently suffering in the dark.
Sometimes, the migraine doesn’t stop you, because you have no choice. You make the pain worse because you have to pay rent or feed yourself, or just because you feel guilty, because you put it off for three days that week already and it’s still there. No matter how supportive your friends and family, or your employers, are, living with migraines means living with constant guilt, and the fear that other people are judging you. You apologize profusely—“I’m so sorry that I cannot do the thing you need, but my brain is on fire and I can’t see”—and you mean it.
There’s no policy fix for that, but there are policy fixes that would lighten that burden. Mandatory paid sick leave would give migraine sufferers the economic freedom to take a day off when their migraines are at their worst, even if they end up suffering through them some of the time. Adding migraine to the Social Security blue book would help provide some safety net for the most disabled migraine sufferers. Single payer healthcare would help more migraine sufferers gain access to the care they need, including the most appropriate medications and long-term treatment by a neurologist.
These are policy fixes that would help everyone, especially the poor, women, single parents, and people with other chronic illnesses. But the impact for those with migraine, one of the most prevalent debilitating conditions, would be massive. Migraine is a lonely disease—a living nightmare raging inside your head, invisible to everyone else, that makes it painful to just be alive. Millions of women have been gritting their teeth and marching on through their nightmares to get by. It’s long past time to help them out.