Hysterical

1

MEDICAL HISTORY

And the Oscar goes to… Casey Affleck, Manchester by the Sea!” announced Brie Larson at the Eighty-Ninth Academy Awards. I watched on my laptop in my one-bedroom Brooklyn apartment as Casey Affleck, with a low man-bun, walked onstage, and Larson, who’d won Best Actress the year prior for her role as a sexual assault survivor in Room, hugged him and handed him the trophy—and I couldn’t do that thing: see straight. My right eyeball ached as another accused harasser won an award for his art rather than be arrested or otherwise disciplined for his (twice) alleged crime (that was settled out of court for an undisclosed amount).¹

Days later, the ache spread to my left eye. More days later, I couldn’t read my street sign at the crosswalk.

For what I’d guessed was eye strain from screen devotion, I booked an appointment with an ophthalmologist on the Upper West Side (not covered by insurance). Joan Didion’s books were on display at the check-in desk—this was, in fact, Joan Didion’s ophthalmologist (kismet, unintentional)—and the ophthalmologist’s administrative assistant handed me the first set of medical history forms I’d repeatedly fill out over the next two years.

Seated in the waiting room that looked like an art gallery, I told the form a little about myself.

Age/Sex/Location: Early mid-thirties/female/in my head

Race: White/translucent

Astrological chart: Virgo sun, Cancer moon, Scorpio rising

Marital status: Single. Like single-single, like assembling-IKEA-furniture-single single

Emergency contacts and safety nets: Well-to-do mommy and stepdad

Occupation: Freelance writer and editor working mostly for free; gig artist (dog-sitter, nanny, transcriber, barista); “artist”; artist; “unemployed” (per my dad)

Insurance: Medicaid, the law of attraction

Privileged: Yes

Medications: Yes

Do you agree to not get sick unless you (or someone you know) can afford it?: Yes

Do you agree to not make enough money in order to qualify for Medicaid and never make so much money that you won’t (1) be eligible for Medicaid OR (2) be able to afford insurance?: I do

My eyes were dilated, tested, touched. Joan Didion’s ophthalmologist recommended artificial tears and fish oil supplements, and he rewrote my glasses prescription. The ordeal was over.

One week later I picked up my glasses with the new lenses, tried them on, and waited for my eyes to adjust to Court Street in Brooklyn. They didn’t. The prescription was wrong, or the lenses were, or my eyes, I couldn’t tell, but at least I could begin panicking.

Back in the ophthalmologist’s waiting room for repeat exams, I stared at framed landscape paintings I couldn’t see and burst into public tears. What if I never see another landscape? I had taken landscapes for granted. I pressed the image of the landscape into my memory, just in case.

“The prescription’s correct,” the ophthalmologist assured me.

I revisited the glasses boutique. “The lenses are accurate,” the optometrist assured me.

So, I met with new ophthalmologists and new optometrists with new hands, and I got newer prescriptions that were old after a few days.

Soon my eyesight didn’t matter because I had another complaint: a headache. Actually, sometimes it was a headache, but most times it was a poltergeist trying to pry my eyes from their sockets.

I’d had headaches before, a few, and they were not like this one. This headache did not end.

A neurologist tried to categorize it. First, it was a migraine, classed as a “primary headache,” the third most common and seventh most disabling medical disorder worldwide (forty-seven million Americans experience migraine, and 75 percent are women). But I didn’t have typical migraine symptoms of nausea or seeing auras, so the neurologist reclassified my headache as “cluster headaches,” also primary, also known as “suicide headaches,” so nicknamed because the pain is off the pain scale, because the pain won’t kill you but you wish it would. True to cluster headaches, my pain was one-sided and concentrated around my right eye but had spread and had a random beginning that suggested a random end. But my pain wasn’t “enough” pain, although it was all-consuming, to be a cluster headache.

Other primary headache disorders the neurologist ruled out were “stabbing headache” (or “ice-pick headache”), “headache associated with sexual activity,” “new daily persistent headache (NDPH),” and more listed in the infinite International Classification of Headache Disorders. That my headache was unclassifiable was its only certain characteristic.

To find the source of the pain, another neurologist tested my brain and my nerves and my gut (also called the “second brain”). I’d hoped for “brain tumor,” just to have a name, any name. “Brain tumor” implied that doctors would come and get my pain and also take me seriously. Because if a woman is in pain that has no name, then no, she isn’t.

The CT and MRI scans didn’t show a tumor. To single out food allergies, the neurologist put me on an elimination diet, which has two parts, the elimination phase (stop eating everything you eat), and the reintroduction phase (start eating the food you eat again, one food at a time, to see which food, if any, causes symptoms). It takes five to six weeks that register as five to six years, and I found out I had no food allergies.

Next the neurologist looked for nerve compression via a nerve conduction velocity test. A nurse stuck electrodes on me that would send mild electrical impulses to the nerves under my skin to stimulate them and isolate nerve damage. “We’ll start with a trial run. This won’t hurt,” the nurse had said, I think, though I’m not sure because she’d just electrocuted me. This was the first “wouldn’t hurt” of thousands to come. Wouldn’t hurt whom, and wouldn’t hurt how much? The actual evaluation would have stimulated/fried nerves across every part of my body, like G-d stabbing Her fingernail into tangles of fibers until they smoked.

“I’d like to reschedule,” I said, and then didn’t.

Over the phone the neurologist put me on artificial energy (vitamins B-2, B-6, B-12) and wrote me prescriptions for military-grade magnesium and the headache medication of choice, triptans, which desensitize pain nerves and reduce blood vessel constriction in the brain. I took triptans in pill form and by self-injection with a prefilled syringe that I jabbed into my own thigh. The neurologist also prescribed sedatives. (Whenever I had a problem, whatever the problem, I was prescribed sedatives. Women like me receive sedatives for pain instead of pain medication for two reasons: hurting women are seen as “anxious,” not “hurting,” and medication treats the affliction, while sedatives shush the woman with the affliction.)

I swallowed the sedatives and felt better. So I swallowed more. Even better. I took just enough to sleep and just enough to be awake and just enough to sit still and initiate a time-lapse. Later I’d add to the mix and go through three thousand bottles of Advil and prescription-strength Advil and Advil Cold & Sinus, as well as multiple rounds of oral steroids that felt like snorting cocaine without having to snort cocaine, plus muscle relaxants and Benadryl I’d pop for nonallergy reasons. The pills took care of me, and because of the pills I’d be okay. This is for my pain, and this, and this. I’d do anything to relieve my pain, anything at all; I would have given blow jobs to Fyre Festival employees to relieve my pain.

“Are you better yet?”

“Get better!”

“I hope you’re feeling better!”

“How are you?”

This is what well-intentioned people asked or said to me, to my face.

They expected me—and every other woman in pain—to answer pleasantly or exuberantly, with pain redacted.

I hated to be insolent, but I was not better or getting better or feeling better. The allegation of “better” lost its significance to a person in a pain that no one else was in, a pain no one knows unless it brings them to their own knees on their own floor.

“Have you tried going back to normal?” the same people would ask. “Or not feeling so sorry for yourself?” Like that which didn’t kill me must be gotten over without further ado. Like I was unfun to hang around and could I please stop that now?

They suggested “relaxation” and “juicing” and “showering” and “going agog at the splendid majesty of the sunrise sky” or whatever—

“Could it be that you don’t want to get better?” they wondered out loud, implying I was doing this to myself and making a choice, an ugly choice, living with pain I decided to have.

I didn’t want to talk about it anymore with the feeling-fine.

What they were really doing with their questions was putting my pain out of their minds by suggesting it was all in my head.

I must not have wanted to get better when during my annual physical that fall my primary care physician said what we pray they’ll never say. “Hmm.”

She was doing a breast exam, and my breasts were lumpy.

“Which is probably nothing to worry about,” she said and referred me to radiology for an ultrasound.

Days later a male technician smeared goop all over my chest and moved a wand in circles as he watched the attached monitor and pressed down without pity. He lingered over one spot, pressing harder and harder for longer and longer—probably nothing to worry about.

The male radiologist joined us. “I want to biopsy this,” he said. “You shouldn’t worry about it.”

Once alone I used a roll of brown paper towel to sop up the goo and then scheduled the biopsy for as soon as possible.

The earliest available appointment was in one month. I had to maybe have breast cancer and not worry about it for thirty-one days.

My mom has had breast cancer three times. I was in eighth grade; I was twenty-eight; I was thirty-two when she told me about the small malignant tumor in her left breast. But apart from that she kept her cancer from me, and I wouldn’t have known she had cancer if I didn’t, actually, know. She wore blond wigs or head coverings day and night, and not once did I see her bald scalp. She washed everyone’s laundry and went to work and prepared every meal. She also downplayed or withheld specifics: the third recurrence was “a molecule of cancer,” and her double mastectomy was “like going to the drive-through” and dropping off her breasts without leaving her car. (“Drive-by mastectomies”—an extensive surgery of body-part removal downgraded to an outpatient procedure—are routine.)

My grandmother, my mom’s mom, had pancreatic cancer in 1966, and no one told her. Doctor’s orders. As if to name her pain would cause her more. My grandmother would ask my mom what was happening to her, but my mom was told not to tell her, out of love. In turn, my grandmother, out of love, would ask my mom, age fifteen, to go into her bedroom and close the door so in the living room my grandmother could cry out from pain she didn’t understand. (Male doctors refused her morphine, claiming that she—although dying—would become addicted; instead, they severed her nerves twice.)

“It was not mentioned,” my mom says now about her mother’s illness.

My mom worshipped her mother, a brown-eyed brunette with glow-in-the-dark pale skin like me. I wasn’t told about my grandmother’s pain until I was sick, years after I’d written a short story about a woman who tries to drown herself in her bathtub—not to kill herself but her pain, to be dead only to end her dying—which my grandmother had tried. (This is a family secret because the act was “out of character,” because my grandmother was “strong.”) How did I write that story without knowing about my grandmother’s suicide attempt? How did I know without knowing? I just did.

“This will feel like being at the dentist,” the male radiologist said about the fine needle aspiration, moments before the biopsy.

For most minor procedures on and in my lady parts—procedures that feel anywhere from painful to there-are-no-adjectives-to-encapsulate-how-painful-this-is painful—I’d pop two or three Advil half an hour beforehand, which doctors suggested if they remembered. But for a biopsy, aspirin-like medications (e.g., ibuprofen) are forbidden, so I was stone-cold sober.

“You may feel some discomfort,”² the male radiologist said as he shot me in the right boob with local anesthesia, then shot me again in the boob with a hollow needle that sucked out boob innards, and then shot me a third time in the boob to insert a stainless steel grain of sand as a marker for future radiologists (in case the biopsy disclosed cancer cells).

“LIAR,” I’d wanted to yell. I’ve been going to the dentist my whole life—for cleanings, retainers, mouthguards, headgear, braces, teeth-pulling, wisdom-teeth removal, and gum surgery in which the top layer of my soft palate was snipped off and stitched onto four spots above my teeth where the gums had receded to the root from grinding—and the dentist was not like a breast biopsy at all, not at all.

Nor was the post-biopsy mammogram—an archaic process that pancakes one breast at a time—like the dentist.

The male radiologist, who did not have to sleep with boobs or walk with boobs or travel with boobs, also did not prepare me for the coming days and weeks where I’d have to hold my bleeding boob to stand or move in any way, or if I were on the subway, sit and fold over onto my thighs and stifle feral noises.

My lump was benign. It sits in my chest with the stainless steel grain of sand at its heart, and once a month I do a self-breast-exam to see if it’s grown bigger than a golf ball. It hasn’t yet.

The male radiologist could have told me to put my boob on ice or at the very least acknowledged the difference in our chests. I would learn—not from the mouth of any doctor but from reading books by women—that the institution of medicine rarely acknowledges sex differences that show up in every human organ, tissue, and cell, and in most diseases. This disregard begins in medical schools. Caroline Criado Perez writes in Invisible Women, “Medical education has been focused on a male ‘norm,’ with everything that falls outside that designated ‘atypical’ or even ‘abnormal,’” so medical students “learn about physiology, and female physiology. Anatomy, and female anatomy.” Just like how there are “executives” and “female executives”; “presidential candidates” and “strident hags who are running for office for some reason.” Most medical school curriculum hardly integrates sex- and gender-based medicine; AARP found that “most medical schools and residency programs don’t teach aspiring physicians about menopause,” despite every cisgender woman eventually going through it (“nearly 80 percent of medical residents admit that they feel ‘barely comfortable’ discussing or treating menopause”).

This bias enters medical research, which often excludes women. Perez quotes article after article that states some version of “Female bodies (both the human and animal variety) are… too complex, too variable, too costly to be tested on. Integrating sex and gender into research is seen as ‘burdensome.’”

(Note: when medicine says “female” and “women,” the institution has a smaller group in mind. “Woman” often means “white, cisgender” woman, which does not represent all women, not Black women, Indigenous women, women of color, trans women, nonbinary people, people with uteruses, pregnant women, menopausal women, incarcerated women, immigrant women, uninsured women, working-class women, women in shelters, fat women,³ or disabled women, even though differences in race, history, age, class, and circumstance alter a patient’s treatment and treatment options.)

What the male radiologist didn’t say said it all: that millions of women are in unexplainable pain because a woman’s pain just isn’t important, and that if men had to experience a woman’s pain, only then would a woman’s pain be a matter of life and death, and attended to. Male artist Pablo Picasso once explained, “Women are suffering machines.” Like women are well versed in living with pain and are bred for pain, for giving birth when birth splits us open.

In all modesty, a woman’s pain is a lot to bear; who can bear it but women?

Women report less pain than they bear. In her essay “The Pain Scale,” author Eula Biss rates her pain a three, and her father, a physician, says, “‘Three is nothing.’” To Biss, a three is “mail remains unopened. Thoughts are rarely followed to their conclusions. Sitting becomes unbearable after one hour. Nausea sets in.” Sonya Huber, in Pain Woman Takes Your Keys, rated her chronic pain lower than it felt so she’d “be manageable”; she grapples, “If I rate my pain a two or a three, do I mean that I thought about death only two or three times in the past week?”

Whenever I was asked to rate my pain, I sensed the trick question. The “right” answer involved a lot of subtraction: My pain is killing me, which is “ten” out of ten—

but my pain isn’t that bad unless it actually kills me, so it’s a “nine”—

but I shouldn’t exaggerate, so “eight”—

and I should subtract my feelings about my pain—

and subtract for emotion in general and to account for gender stereotypes—⁴

and subtract again because I don’t want to be unreasonable or unoriginal or pessimistic—

and subtract again just to be safe—⁵

and subtract again so that I’m not outside sympathy and shrugged off, and can get the help I need—

Three.

Whatever number my pain felt like, I was always going to say it felt like a three.

And if I weren’t white, then doctors would hear “zero.”⁶

The pain in my boob was a three. And my next symptom was also a three. That winter my throat was a California wildfire. But I was slow to go back to doctors because I thought that they thought I was hassling them with my afflictions. So I hydrated with over-the-counter cold medication and herbal resistance remedies with high Amazon ratings.

In spring I caved. The three-month sore throat called for four specialists over as many months: a general practitioner, who then referred me to an allergist, who tested me and told me I didn’t have allergies and then referred me to an ear, nose, and throat specialist (ENT), who stuck swabs all the way up my nose until I swear she touched brain, and then an herbalist (not covered by insurance).

The ENT guessed that my sore throat came from my stomach and from the bottles of painkillers I’d pounded for the headache, which had torn up my gut and resulted in acid reflux. (This is common, when taking too much pain-relieving medicine causes more pain.) She recommended over-the-counter acid reducers, and I tried one after the other, and each made the hollow organs of my digestive system weep. (This is also common for women, when the treatment causes havoc.) Most medication didn’t agree with me not because I was abnormal (my working theory) but because I was typical, because:

The ENT recommended seeing a hypnotherapist and getting an endoscopy where she’d insert a long tube into my body through my mouth to see my throat, esophagus, and stomach in detail—

Instead, I booked an appointment with an herbalist and hoped Western medicine would lose my number.

The herbalist had slipped on a broken wineglass and torn her Achilles tendon at her baby shower, so we had to meet over FaceTime. Off the bat she asked, “Do you track your period or use a period tracking app?”

Not one MD asked me about my menstrual cycle beyond when my last period was, which I never knew.

“Download an app now,” she said.

Out of apps named Flo, Eve, Glow, and Life, I downloaded the free app Clue, and as I tracked my period with technology, the herbalist brewed many hundreds of dollars’ worth of teas and tinctures that I boiled or dripped onto my tongue, along with a shot of apple cider vinegar before breakfast and a shot of sauerkraut juice after dinner. But the teas and tinctures had the same effect as pills and put me in two alternating states at every time of the month: suicidal and diarrhea.

Throughout the summer my throat was sore and now my stomach felt as though some part inside of me had given up. Finally I shat blood. That is to say, finally my latest problem was bad enough where I could call it a problem and ask for help for my problem. Blood clarified that I wasn’t making up another symptom.

“What if nothing is wrong with you?” asked the gastroenterologist at our appointment. She ordered blood work to confirm nothing was wrong and called me the next day.

“Are you hallucinating right now?” she asked.

I didn’t think so?

She said I had hyponatremia, a fatal condition of low sodium in the blood. Hyponatremia happens to marathon runners and to young people who take MDMA at raves and drink so much water that they die (water drowns their cells through swelling).

Symptoms include confusion, hallucinations, fatigue, abdominal cramps, and drowning from the inside out.

Blood sodium regulates the water in and around cells, and normal sodium levels are between 136 and 145 mmol/L (millimoles per liter). Hyponatremia occurs when the blood sodium level goes below 135 mmol/L. The gastroenterologist intercepted my level at 125 mmol/L. Drastic declines are lethal (my good friend’s colleague physically dropped dead from a quick decrease), and gradual decreases like mine make a person sick over time.

“If you start to hallucinate, then go to the ER,” the gastroenterologist said. “That means your blood sodium has dipped to a point where it would be terminal.”

She made an appointment for me the next morning with a nephrologist who dealt with kidney diseases, and that night I monitored myself and tapped 911 on my phone to have it there if I forgot numbers—

But! My landlord had me call 911 the day before to report a robbery I witnessed in my building—

and I didn’t want to call two days in a row and seem unbalanced. Better to just wait and see if I died, like the many women who don’t report their own heart attacks or strokes for fear of being called stressed-out hypochondriacs.

To raise my sodium, the nephrologist put me on a no-water diet. Every day I was starving for water and had to walk in 90-degree heat and humidity to urgent care to have my blood drawn. I walked very, very slowly since I couldn’t spare the sweat and felt catlike to still be living.

Footnotes

1 Meanwhile, Brie Larson got flack for “the look on her face” and for being too unenthused.

2 Similar to “you may feel some pressure” or “you may feel some cramping” or “you may feel a small pinch” or “your pain shouldn’t be causing you any pain” and other phrases that people-not-in-your-pain say that almost never match the actual feeling or reaction.

3 The most popular medical advice for women, regardless of issue or fact, is to lose weight.

4 A Yale study revealed that young boys’ pain is taken more seriously than young girls’ due to gender stereotypes like “girls are more emotive” and thus dramatize their pain in “cries for attention.”

5 McGregor writes in Sex Matters, “The more vocal women become about their pain, the more likely their providers are to ‘tune them out’ and prescribe either inadequate or inappropriate pain relief medication.”

6 Dr. Nafissa Thompson-Spires resisted a hysterectomy for her unlivable endometriosis because of its history: in the mid-nineteenth century, the “father of gynecology” carried out his “groundbreaking” experiments on Black women based on the false premise that Black people don’t feel pain, which endures today as doctors provide even less adequate and even less appropriate treatment to Black women.

7 A friend of mine was prescribed Ambien in 2007 and was prescribed so much that she woke up in the bathtub choking on water after falling asleep; in 2013 the federal Food and Drug Administration recommended cutting Ambien dosage in half for women.

8 “Nearly twice as often as men,” according to 2020 research on adverse drug reactions from the University of California, Berkeley.