A few years ago, my sister and I debated which was worse: her Crohn’s disease or my stage-one cancer.
She thought cancer won out, primarily because once it makes itself at home in your body, evicting it can be tough. To wit: I’ve had cancer three times, the most recent recurrence concluding in a liver transplant. (I could say “final recurrence,” but I don’t want to jinx myself.)
“You had to have chemo,” she pointed out.
“Yeah, but otherwise I was fine,” I replied.
Yes, chemo sapped my strength: After a few brutal rounds, I couldn’t even stand long enough to use a microwave. But at least I could take down a slice of birthday cake without a second thought. Plus, my cancer was asymptomatic, and the tumor had been chilling in my liver, likely for years, without my noticing. Only when my gynecologist felt a lump during an annual check-up did anyone realize I was incubating a bunch of rogue cells.
Christina, on the other hand, felt a stabbing pain in her stomach after every meal. Her Crohn’s, an autoimmune disease in which your immune system inexplicably attacks your intestinal system, seemed worse to me. Sure, with cancer at any stage, life is technically on the line, but Christina’s life has been dramatically limited by her own disease. She’s basically in a lasting relationship with the toilet; road trips and space expeditions are probably out of the question.
“You still had cancer,” she replied. I shrugged.
We eventually agreed to disagree, since neither of us felt comfortable saying we had it worse than the other. The humility in this is like a reflex — and a uniquely female one at that. It’s not just Christina and me: As three new books all illustrate in their own ways, women have a very real habit of playing down just how bad our pain is. We’re afraid of being seen as dramatic, of seeming incapable of getting our shit together, even of being accused that we’re making it all up.
In her book Ask Me About My Uterus, writer Abby Norman explains that this fear is rooted in that vague, age-old affliction called hysteria. Derived from hystera, the Greek word for uterus, it was once the typical catchall explanation for any unexplained ailment experienced by a woman. Ask Me About my Uterus, Norman’s memoir of her struggle with chronic pain and endometriosis, spends several chapters recounting its long, scream-worthy history and influence on modern medicine.
“Even before it had a name, the concept of what hysteria would become was integral to how women were perceived: They were emotionally labile to a pathological degree, or vulnerable to demonic possession or other manipulation by unseen evils,” she writes. According to Norman, hypochondria, faking illness for some ulterior motive, and somatization disorder (where “it’s all in your head”) are all modern offshoots of old-school hysteria. That’s what she discovered firsthand when she sought answers for the mysterious, breathtaking pain in her abdomen. The pain, later attributed to endometriosis, and its subsequent symptoms (including a mysterious loss of feeling in her midsection) ultimately led to her dropping out of college — and, more encouragingly, shaped her future career as a science writer.
Norman doesn’t sugarcoat just how difficult it can be to convince doctors that pain is legitimate. Instead, she offers searing commentary on how women have been conditioned to avoid seeking treatment or admitting that we feel bad in the first place. “We’ve all done it,” she writes. “We’ve all gone to work with a fever and said, ‘It’s nothing, just a cold,’ when we know deep down we had the flu. We’ve rationalized having ‘food poisoning’ for weeks as the real culprit digs its heels deeper into our guts. We’ve fainted, vomited, bled, laughed, screamed, and cried — and said, ‘I’m sorry, I don’t know what came over me,’ when we know damn well, deep down, exactly what came over us: a wave of nausea, crushing fatigue, disorienting dizziness.”
Research shows that men, on the other hand, receive diagnoses more promptly, and their complaints usually fall on sympathetic ears. As Maya Dusenbery writes in Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick, this is in large part because they’re seen as more stoic. It’s probably for that reason that men receive pain meds more quickly (within 47 minutes, on average, compared to women’s 65) even when they report the same pain scores. If a man is complaining about pain, it must really hurt. Women, on the other hand, might be experiencing pain — or maybe they’re just being dramatic.
Because of the lack of trust in women’s assessments of how they’re feeling at any given moment, they face discrepancies in the timeliness of treatment and quality of their care that extend beyond pain relief. In her book, Dusenbery traces how women are overlooked in every corner of illness, from autoimmune diseases to chronic pain (which disproportionately affects women and includes everything from irritable bowel syndrome to migraines to arthritis). Even heart issues in women often go undetected, partially because doctors are quicker to write off any kind of pain as stress: Some practitioners assume the pain in your arm, the shortness of breath, or nausea — all signifiers of a cardiac event in women — are just a panic attack. Dusenbery writes: “The presence of stress, the researchers explained, seemed to spark a ‘meaning shift’ in which women’s physical symptoms were reinterpreted as psychological, while ‘men’s symptoms were perceived as organic whether or not stressors were present.’”
Another reason for inconsistent care may be that the health-care system literally wasn’t built for women, who have historically been excluded from both clinical trials and large-scale medical research studies — including several that drew conclusions now considered common knowledge (like one that determined that a daily aspirin could reduce the risk of heart disease, and another that assessed whether dietary changes and exercise could together prevent heart disease).
Even studies on female-oriented diseases, like breast and uterine cancer, were done on male subjects, like a pilot study at Rockefeller University that analyzed how obesity affects estrogen activity. And if you need proof that this sort of thing was systemic, consider this: As of 1992, writes Dusenbery, “there were only three gynecologists on staff at the NIH, compared to thirty-nine veterinarians.”
Practically speaking, this exclusion of women can have dire consequences on the care they receive. For example, many primary care practitioners aren’t familiar with the full scope of autoimmune diseases. And since three-fourths of those afflicted are women — well, there you have it. Even those that do specialize may not have the time or the training to properly treat their patients. “There is no specialist in autoimmune disease — no autoimmunologist — comparable to an oncologist when it comes to cancer,” Dusenbery points out. “Instead, autoimmune diseases have remained siloed in different organ-specific specialties.” (If only I’d had that fun fact at hand when debating Christina, whose autoimmune disease led her on a months-long wild goose chase for a gastroenterologist who could properly treat her.)
But this issue isn’t limited to medical settings — women in pain experience plenty of bias outside the exam room in their day-to-day lives. In Invisible: How Young Women With Serious Health Issues Navigate Work, Relationships, and the Pressure to Seem Just Fine, author Michele Lent Hirsch explores both her own health issues (a punishing lineup of mast-cell disease, thyroid cancer, hip surgery, and Lyme disease) and those of others through the lens of a 20-something navigating romance, friendships, and careers.
When you’re juggling those moving parts, she writes, you can’t just stop to deal with illness. If you’re lucky, you can pause, which is what Lent Hirsch did after her cancer diagnosis: She took one sick day. “I’m not sure what I did on that sick day, other than sit around in my pajamas and think about the word tumor,” she writes. “One day to process it, to let the shock run through me. And then, the next day, I went back to work.” When my own oncologist called to tell me that new tumors had appeared on my scan, I went back to my desk, pillaged my emergency stash of Twix bars and went back to working on a story. Cancer won’t pay my bills.
Dating while sick is no picnic, either. Lent Hirsch recounts a study from the American Society of Clinical Oncology in which researchers found that husbands are ten times more likely to leave women with brain tumors than wives are to leave their husbands. For other illnesses, such as lung cancer, the risk of divorce when the wife is diagnosed is 5.7 times higher than when it’s the husband. And this is for married couples — forget about that Bumble date.
After spooking multiple dates with news of her illness, Lent Hirsch wonders if it’s easier for a sick woman to date a sick partner. In her case, she did just that. “Although Bailey hadn’t had the extreme medical conditions I had, she had a body that tended toward my end of the spectrum: several chronic health issues that she dealt with weekly or daily and that one might not expect in someone her age,” she writes. “Something about Bailey’s having a body and gender experience closer to mine did make me less worried for a while.”
I understand Lent Hirsch’s rationale. My ex-boyfriend and I reconnected when I began chemotherapy after years of radio silence. His younger brother had had stage-four lymphoma, so I grilled him for details on chemo. (Does it hurt? Did he throw up?) It’s comforting to know that, as my now-boyfriend again, he’s already familiar with the shrill beeps of an IV machine and the terror of every check-up. Even more comforting is that that he’s been around illness enough to believe in my misery without me having to insist on it.