September 17, 2020 | Feature
“i am here”
the invisible labor of migraines
CONTENT WARNING: Sexism, medical racism
The fog usually rolls in around noon. My head becomes suspended in lukewarm air. My feet feel colder and my ears burn, just a little. The ache begins either with a pulsating, pounding pain or a dull buzz in the back of my skull. Once, my neurologist asked me to write down what my head felt like every day for a week. My journal that week included each of these adjectives: warm, full, compressed, distant, flat, light, heavy. On a good day, the pain in my skull is dull like the taste of swiss cheese. If it’s a bad day, light stabs my eyeballs with pixelated knives, forcing me to scrunch up my face and squeeze every muscle like I’m about to play a loud note on the trumpet.
Migraines are reactions to waves of activity in the brain cells. When someone’s serotonin and estrogen levels dip or spike, their nerves can miscommunicate, leading the blood vessels on the surface of the brain to swell. The five senses become hyperactive during a migraine: Bright light, loud sound, strong smells, and even certain tastes can trigger migraines, or exacerbate them.
Estrogen variation often contributes to migraines, which are three times more prevalent among people assigned female at birth (AFAB) than men. As a result, the medical community has long considered migraines a “woman’s disease.” It is perhaps this descriptor that’s made it so hard for me to find effective treatment.
Doctors regularly downplay and even disregard womxn’s symptoms. As a result, it can take years to diagnose womxn with common medical conditions. According to a study by the NHS, one in ten AFAB people suffer from endometriosis (when endometrial tissue appears outside the uterus, causing pelvic pain), but it usually takes seven or eight years to be diagnosed following symptom onset. Womxn are more likely than men to be given sedatives instead of appropriate treatment when in pain, and more likely to be wrongly diagnosed with mental health conditions. Medical bias disproportionately affects Black womxn, and migraine diagnosis is no exception: A National Medical Association study found that compared to Caucasians with headache disorders, Black headache sufferers are more likely to be underdiagnosed, undertreated, or misdiagnosed with depressive disorders.
I’ve had migraines since I was six years old, when my abdominal pain migrated to my head. They occurred about once a week until I was 16, when they began happening daily. The four years since have been filled with a litany of medications. I’ve tried the triptans (Suma-, Riza-, Maxi-), Amitriptyline, Aimovig, Emgality, Cambia, Nurtec, nasal spray, Melatonin, therapy, and an unfathomable amount of Coca Cola. At first, my doctor tried to convince me I only needed Melatonin: Sleep and hydration would fix me. Admittedly, sleep has never been a priority of mine—but I had migraines even at age six, when my bedtime was 7:00 pm. And no quantity of water could calm my inflamed brain.
Only my current neurologist, Kate, has been aggressive and inventive with treatments. But these prescriptions have never lasted. First came the triptans, which stimulate serotonin to decrease swelling. Each one worked for a few months, until my brain became “triptan non-responsive.” So, we upped the dosage until an EKG told us to stop. Next, I began injecting myself every month with a long and very expensive needle, which left my right thigh speckled with blue dots: Aimovig, designed to block the production or reception of a protein called CGRP. When my body developed a resistance, I switched to Emgality, another blocker. But this needle was so painful that injections made me vomit, so it was back to Aimovig, which alleviates my symptoms about two-thirds of the time.
When medication does work, though, it’s shocking and disconcerting. Kate prescribed Cambia, an anti-inflammatory powder that tastes like licorice. I told her I didn’t like it; it made me dizzy and nauseous, the world a little too bright. She laughed and said, “I think you forgot what a clear head feels like.” My body was overstimulated by how much I could see and hear. I was so used to dullness that clarity was overwhelming, like walking out of a movie theater into a sunny day.
In her essay, “In Bed,” Joan Didion writes, “All of us who have migraines suffer not only from the attacks themselves but from this common conviction that we are perversely refusing to cure ourselves by taking a couple of aspirin, that we are making ourselves sick, that we ‘bring it on ourselves.’” In elementary school, my migraines struck on Mondays at lunch time like clockwork. My then-neurologist shrewdly pointed out that pattern. His medical advice: “Try to relax, honey.”
Didion also references a “migraine personality,” a term coined by doctors to describe ambitious, perfectionistic women. Emotional disturbances like anxiety and stress are the most common triggers of migraines. Still, according to the American Headache Society, “In most migraine patients…psychological factors are important but are secondary rather than precipitating etiologic agents.” Stress and anxiety impact migraines, but a migraine’s root causes tend to be physical. Therapy has helped reduce my anxiety, but my migraines persist; relaxation was never going to cure me. As Didion observed, migraine sufferers are given the burden of their own care. During childhood, that burden was shouldered by my mother, a migraine sufferer herself. This is no surprise: Migraines are inherited genetically. My mother has them, and her mother had them before her. And now, me.
Because our brains respond to barometric pressure, overcast days usually triggered both my mother and me. Even on those days, she would pick me up from school and help me up to my room, where I would undress and slide into my freshly-made, cool bed. She’d close the blinds and turn off the lights. I’d wake up to a fresh bottle of water and toast with butter (a safe food that wouldn’t upset my stomach) sitting on my nightstand. She did all of this while in her own excruciating pain. Today, I asked her what her migraines felt like over dinner. She laughed and replied, “Like someone stuck an awl through my fucking eyeball.”
Once, on vacation, my mother spent three days in bed, consuming only water with mint and buttered bread. I would creep into her bedroom, poke her awake, and ask her what was wrong. My dad would respond, “Let your mother sleep, she’s sick.” My answer: “But mommies don’t get sick!” I couldn’t comprehend that my mother also needed care, rest, solitude. To me, mothering meant constant presence and forthcoming solutions. My mother’s migraines broke this myth.
When my mother was incapacitated, the house would fall apart at the seams. My dad would try to construct a last-minute dinner (usually spaghetti and Rao’s sauce), groceries would not be bought, and bedrooms would not be cleaned. During quarantine, my mother and I have done the shopping, the wiping down, the Clorox-buying, the cooking, and the cleaning.
My mother had a migraine last month, so my brother and I ordered takeout. My brother walked inside the house with the hot pizza box, plonked it onto the table and immediately started to eat a slice. I exploded, interrogating him: “Why didn’t you wipe that down? Did you wash your hands?” and quickly realized he had never watched me and my mother clean. He didn’t even know who was buying the groceries.
Like domestic work, migraines are invisible to the untrained eye. My mother can take one look at me and tell that I’m hurting. She says I lose the sparkle in my eyes. As I’ve grown up, I’ve learned to notice what’s invisible. I watch her pick vegetables, work on her computer at the kitchen table, ask my brother if he’s eaten, attend Zoom meetings, do the dishes, and sometimes pause to take a deep breath. The two of us rarely agree, but I take her side in every argument against my father. When our heads hurt, we sit on her bed at 4 p.m., drink Cokes, and watch HGTV as we massage our temples. Now, if she’s too tired to cook, I make her eggs for dinner. As an adult, I rarely feel my mother truly knows and sees me—but only she can recognize my migraine pain. Our mutual knowledge binds us together, even as my life has become radically different from hers.
I am not naturally domestic. I’m a disaster in the kitchen, I’m messy. I don’t see the point of organizing my living space and I don’t like when other people tell me what to do. Still, migraines challenge my resistance to home life. Wherever I am—in class, on a date, at work—a migraine can always send me home. My headaches force me into a domestic space: They require that I be cared for. I’m terrified of this confinement and the dependence that comes with it. So, I grit my teeth and ignore my pounding head. I go to class, do my homework, even attend parties. Every few weeks, I collapse and sleep like Rip Van Winkle. As my stress builds, I forget to drink water, to eat vegetables, and like this, the cycle continues.
My freshman year, I had a migraine that lasted 10 days. I let myself sleep through class on the first and second day, and forced myself out of bed on the third. On day six, I took a 10-hour nap—a short reprieve—but I didn’t let myself savor my newfound energy. All I could focus on was my absence: I missed a dinner with my favorite class, failed to turn in a paper. My stomach turned and head pounded as I sent out one apology email after another. When I missed yet another rehearsal, I cried and threw my bedding onto the floor. On the morning of the tenth day, I took an Imitrex (it didn’t work) and promised myself I would never lose so many days again.
Aimovig’s slogan goes, “With Aimovig, you can say ‘I AM HERE.’” The drug’s commercials show mothers who can’t play with their daughters and aloof fiancées crying to their boyfriends. These ads make me laugh—they look nothing like me—but the slogan terrifies me. I am so afraid of not being here, missing school and work and life. I’m afraid my music will suffer because my senses are dulled. I worry my partners will grow tired of my exhaustion, and that I’m not as smart as I could have been.
I asked my mother if she resented working while in pain. She said, “No. I never thought twice about it. We have responsibilities, I couldn’t let a headache slow me down.” Migraines, of course, are not mere headaches—they take over your entire body. Still, my mother and I both feel guilty for feeling pain, being absent. For needing care instead of providing it.
In August I moved in with two of my closest friends. We’ve spent most of our time piled on our living room couch—until last Thursday, a cloudy day, when the air pressure kept me in bed. I was apprehensive, fearing what Didion describes as “the accusing eye of someone who has never had a headache,” but my roommate brought me buttery toast.
I napped fitfully all day and couldn’t fall asleep that night. Instead, I listened to the movie my roommates were watching through the walls. I hadn’t called my mother since I moved, but I texted her, “my head hurts.” The typing bubble appeared and disappeared, and a few minutes later she responded, “I know <3.” I looked at the weather app; it was cloudy in Connecticut too.