We all know someone with a chronic illness. Given that 117 million people in the United States live with one or more chronic illnesses, we’re more than likely encountering someone in our workplaces, our homes, and our everyday lives who is navigating the ins and outs of sickness and the pain that accompanies it. Chronic illnesses are especially pervasive among women, and thanks to medicine’s long history of paternalism and ambient sexism, doctors regularly dismiss or disbelieve women who suffer with unexplained pain.
“In Sickness” is a weeklong series about chronic illness—and what the misdiagnosis, disdain, and marginalizing of people with chronic illnesses reveals about our culture.
We explored this topic—in part—because a Bitch reader asked us to look into it. Got a question about feminism and pop culture that you want answered, too? Tell us!
Originally published on July 21, 2016.
As I was rolled out of surgery, I looked up at the blurry figure pushing my hospital bed into recovery, and slurred through my oxygen mask, “Did you find endometriosis?”
“Oh yeah, we found a lot in you,” he replied.
I could barely talk or keep my eyes open, but I was so happy and relieved, I started to sob.
Finally, I had a name for my pain.
I had a name for the horrible pinching feeling that came in the middle of my cycle. I had a name for why I was constantly being sent in for ultrasounds for mystery pain. I had a name for why I passed out in college from cramps. I had a name for why I bled and could barely sit for days after great, consensual sex. I had a name for why I peed constantly and why my stomach had been a mess my whole life. I had a name for why my cramps bore through extra strength Tylenol, even as I took it every four hours on the dot. I had a name for why I was passing blood clots the size of ping-pong balls every month. I had a name for why my period disappeared for three months at one point and continued on for three months at another point two years later.
The decision to have surgery came during a consultation with a specialist, after nearly three months of persistent and, at times, debilitating pain. I needed painkillers constantly, sometimes a cocktail of two kinds, even to sleep or rest at home. The only relief I got was under my heating pad with it turned all the way up. My upper thighs and stomach were patchy and red with burn marks, but I didn’t care. I was desperate.
In recovery, my doctor explained to me that my endometriosis was stage I, but it was pervasive. He took pictures during the surgery and I looked at them that night like a trophy. My smooth tissue was covered with what appeared to be tiny blisters. Months of worrying that my pain wasn’t real, months of worrying that I was just weak, that I was too fragile for life—it all fell away.
As women, our health and the care we receive, like all other aspects of our lives, are colored by our gender. Our agony is diminished, our suffering fetisizhed. The disbelief of female pain is well documented. “The Girl Who Cried Pain: A Bias Against Women in the Treatment of Pain,” a 2001 study in the Journal of Law, Medicine & Ethics, documents how women are given less pain medications than men for the same procedures. On the other hand, the study notes that women are more likely to be given sedatives—as women are more often perceived as anxious than in pain. Women also wait longer than men in emergency rooms.
While the days of diagnosing women with “hysteria” are behind us, women are disproportionately perceived to be anxious or overreacting when it comes to their health—a phenomenon referred to as “Yentl Syndrome” by the medical community.
An editorial in the British Journal of Sports Medicine argued that because women menstruate, they are being excluded from clinical trials, and that when they are included, they’re tested early in their menstrual cycles, when their hormone levels are closest to men’s. Georgie Bruinvels, a PhD candidate at University College London, told Buzzfeed News that this leads to a “massive gap of understanding around what actually happens at all the phases of the menstrual cycle.”
Even though heart disease is largely considered the plight of men, studies show that women are twice as likely to die of it. Younger women especially are known to ignore or dismiss the symptoms of heart attacks because the symptoms women experience while having heart attacks, including upper back pain, nausea, and fatigue, are seen as atypical, incongruent with symptoms we normally associate with heart attacks, like chest pains. Despite all this, a 2005 survey of primary care physicians, ob-gyns, and cardiologists found that only one in five doctors interviewed knew that women were more likely to die from heart disease than men.
Race also plays a role in the misdiagnosis of health problems. As reported by Alternet, in a 2012 study, researchers at Johns Hopkins University School of Medicine found doctors with “unconscious racial biases tend to dominate conversations with African-American patients.” Researchers have found that emergency room doctors are less likely to give pain medication to Black children suffering from stomach pain and that Hispanic and African-American kids experience longer ER waits than white kids. In another study published this year, researchers who worked with 222 white medical students found that “Possibly swayed by false beliefs about biological differences between white and Black people, some white medical students tend to rate the physical pain of a hypothetical African American patient as less severe than that of a white patient in the same circumstances.” This systemic bias against seeing the pain of Black patients as just as real as white patients adds up to a widespread disparity in treatment that the medical industry absolutely must address.
Existing in tandem with the disbelief of female pain is the notion that women should experience pain—that it’s ingrained in the “feminine” experience. In the ER we’re asked, “Are you sure it’s not that time of the month?” When we complain to our parents, or peers, or doctors that our cramps are debilitating, we’re handed painkillers and heating pads but rarely answers. We’re told that periods are supposed to hurt. We’re told that symptoms like nausea, headaches, and debilitating abdominal pain are all just part of the ride. We’re told that everything looks “normal.”
This phenomenon is at least in part to blame for the lag in diagnosing endometriosis. I endured pain for years without a doctor ever mentioning the mere possibility of endometriosis. And when I finally was diagnosed I heard horror stories from doctors and friends about other women who only found out when they tried to get pregnant and couldn’t.
PMS and reproductive health have been long part of the history of disbelieving female pain and misunderstanding the female body. PMS was originally thought to exist only in the minds of the women claiming to experience it. And in her recent book All the Single Ladies, Rebecca Traister even cites an 1873 article by a Harvard professor arguing that “the female brain, if engaged in the same course of study as the male, would become overburdened and that wombs and ovaries would atrophy.”
Writer Jessi Klein remarked on this in a recent New York Times op-ed on the problems with pressuring women into giving “natural births” without pain-relieving epidurals:
“It’s interesting that no one cares very much about women doing anything ‘naturally’ until it involves their being in excruciating pain. No one ever asks a man if he’s having a ‘natural root canal.’ No one ever asks if a man is having a ‘natural vasectomy.’”
Endometriosis—which occurs when tissue similar to the lining of the uterus grows outside of it, leaving scar tissue and lesions that cause inflammation and pain—affects roughly one in 10 people who have uteruses. However, the incidence may be even greater than that because it’s often undiagnosed or misdiagnosed, especially in adolescent girls.
The pain of endometriosis can be so constant, so severe, so fatiguing, and yet so familiar that at times, it’s easy to wonder if it’s all in your head. As women, we grow up with doctors and the greater part of society telling us at every turn that to be female is to be in pain. We are, after all, merely living caricatures of Midol commercials, complaining about our bloat and discomfort.
For these reasons, those of us living with endometriosis wait an average of 10 years before being diagnosed. My diagnosis took seven.
We endure ultrasound after ultrasound, tests for IBS, ulcerative colitis, or other diseases for which endometriosis is often mistaken.
There is no known cure for endometriosis, only methods of suppressing it and coping with it. So we try different kinds of birth control; IUDs, taking the pill continuously, even hormone shots. We have laparoscopies and wade through scary misinformation about cure-alls, like the wildly untrue assertion that a hysterectomy will make the pain go away.
Female pain exists in a crossroad of stigma, disbelief, and misogyny. The same world that tells us to be female is to be weak and fragile expects us to understand that to be female is also to grind our teeth through pain. We are expected to buck up and shut up about our discomfort so we don’t embarrass the same people who have the audacity to tell us our bodies are embarrassing.
Navigating daily life with a distinctly female disease is a burden in and of itself while living in a world that recoils at words like “period” and “vagina.”
How could I tell my sixtysomething male law professor that I’d be out sick at least once a month because uterine tissue was growing in the wrong places in my body? Would students around me, especially my male peers, be put off when they asked why I was out sick and I explained what was wrong?
Initially I was hesitant to share what I had been going through. I’d tell my teachers I was dealing with chronic pain. I’d tell my friends it was endometriosis but apologized upfront for that being “TMI.” But then I stopped. I decided I would be unapologetic about my body, and especially my pain. I tweeted about it, I shared photos of my heating pad supply, and I started telling my professors and peers what was going on, without hesitation or embarrassment.
But I was lucky in many ways. I had world-class care at my fingertips that I could afford. I had health insurance. I found a compassionate surgeon who I trust implicitly. I have a wonderful support system of family and friends who take care of me in every possible way and who remind me I’m strong when I feel weak. I grew up in an environment where menstrual and reproductive health was never taboo. I have a mother who comes to all my appointments when I am too nervous and a father who has never balked at making a last-minute CVS run for pads.
Still, it wasn’t easy.
My pain has a name, and I’m grateful for that. But I’m part of support groups online for women with endometriosis, and my heart wrenches every time I see a woman lament over how her surgery yielded nothing. Her fear, frustration, anxiety, and grief are always palpable. I wanted to know I had endometriosis to validate what I had been feeling—but those women, their pain is not any less valid. It does mean it will be harder to explain to friends, to employers, and to colleagues, and that is unfair.
Female pain must be regarded as legitimate. It is more than important that we talk about our health free from stigma or embarrassment. It is necessary. Because disbelieving and delegitimizing female pain is a form of oppression.
I have fear. I’d be lying if I said I didn’t. I’m afraid of what the future looks like, of having to potentially explain my pain to less understanding, less progressive people. I worry about a recurrence and the possibility of relying on painkillers to get by. I’m terrified of not being able to have children. When I talk about endometriosis and how it affects fertility, I can feel myself starting to panic, and sometimes I cry.
I also have hope. I’m optimistic because I know compassionate and quality reproductive healthcare exists. I’m comforted knowing there are people out there like my doctor, my family, my friends, and my teachers, who supported me unconditionally and without shame. I’m reassured when I think about how many women live with endometriosis and with other incarnations of female pain. And I feel powerful when I think of the collective strength of them—of us—and our power to change the narrative, unseat gendered stigmas, and legitimize female pain.
Editor’s Note: This story has been updated to reflect that endometriosis is tissue similar to the lining of the uterus instead of uterine lining itself. (November 13, 2019, 7:10 p.m.)