Google “stock images of women with excruciating menstrual cramps,” “women having nervous breakdowns,” “women on hospital gurneys.” Make several of the women black even though your Google search will not produce these results. String them together on a chic laundry line with clothespins and hang it on your mantle, or maybe paste them into a photo collage, digital or print. Splatter the collage with blood. Untwist the women’s ovaries and take them away. Sew up their vaginal openings so their private parts look like the deformed hermetic triangles of Barbie dolls. You now have a visual rendering of life with endometriosis. It is a poor approximation. Throw the collage in the trash. Maybe it is too ugly after all.
In and out of invasive procedures to misdiagnose and then finally diagnose my symptoms—a colonoscopy, two upper endoscopies, a gastric emptying scan, an MRI, a vulvar biopsy, a dozen transvaginal ultrasounds, two mammograms before I was thirty-four, a laparoscopy, a laparotomy, a mosquito, a libido—I wrote a book. Several of its central characters are women suffering from chronic invisible illnesses, the kind of women in your collage. It means something to me to be able to produce when something is daily trying to take me out.
A chronic illness is a multilayered cruelty, especially when it is invisible. There are trips to the emergency room, to convenient care—which never ends up being as convenient as one might think—there is a lot of waiting around, and after all that waiting, there is a lot of “you’ll have to talk to your primary care physician during regular hours.” The emergency room is kept mausoleum cold.
Before my diagnosis, around 2014, I made my first trip to the ER in the middle of a snowstorm. My husband was out of town, and we lived on the opposite side of town from our colleagues. It was the middle of the night, and my consultation with a twenty-four-hour medical hotline confirmed that I was bleeding too much and needed medical attention. Like me, the Mustang I’d been driving since I was seventeen years old was a California native and did not like snow. Like me, it became a little skittish and tended to spin out of control in the presence of ice that wasn’t in a glass. But it delivered me safely. I waited and waited in the cold semiprivate room while a kind young resident dissected the giant clot I had passed to make sure it wasn’t the miscarriage of an unplanned pregnancy. (It was not.) The resident referred me to a gynecologist, who, after many misfires, eventually diagnosed me with endometriosis in December 2015. That is, she officially diagnosed me. But I already “knew” I had endo. I had known since six months after that first ER visit, after reading the comments section on a BuzzFeed article. The symptoms described there were so like my own, but I didn’t know where to go from there. When my doctor offered a uterine ablation for my constant bleeding, I finally asked her if there were other options. What if I had endometriosis? Casually, as if it had never occurred to her, she said, “Yes, it probably is endometriosis” and immediately scheduled me for exploratory surgery. I’m not sure why it took her so long to say that. I had my surgery on February 1, 2016.
Every trip to a medical facility frays my nerves a little more. There is also for me, as a black woman, the elaborate process of trying to figure out just when to ask for pain medication. Others have written much more eloquently about how black women are routinely underanesthetized by doctors. In Ain’t I a Woman: Black Women and Feminism and Talking Back: Thinking Feminist, Thinking Black, bell hooks problematizes the persistent myth of the strong black woman. This myth contributes to real-life consequences in medicine and elsewhere. In his research on what he calls the racial empathy gap, Jason Silverstein finds that white people literally perceive black people as more tolerant to pain and suffering. And we need only to invoke Saartjie Baartman, the Tuskegee Airmen studies, or Henrietta Lacks for the most notorious examples in a long history of medical malpractice and racism. I am keenly aware of this when I ask for prescription painkillers, afraid a doctor will deny my request. I am equally concerned about being perceived as a doc-hopping, pill-popping part of the opioid crisis. The frantic campaigns to control widespread opioid abuse frame white addicts as victims of an illness. The war on drugs frames black addicts in terms of criminality and incurable pathology. Will a doctor, hearing my request for a refill of my medications—Tramadol, Norco—see me or see a stereotype, a druggie, a drug pusher? Will he recognize my pain at all?
Most of the time, no one can tell I’m in pain by looking at me. I “don’t look sick,” as the narrative goes, and I’m good at masking my suffering. So stoic am I that my childhood bully made me cry every day in third grade, but she never knew because I waited until I got into my mother’s car to release hours of pent-up tears. Physical pain, however, has a way of knocking you down without your consent. I have had some near collapses in my classrooms and in other people’s classrooms. This summer, I attended two writing workshops, and no one but my friend sitting next to me knew that while Mat Johnson, one of my favorite writers in the world, led a discussion of my in-progress novel, I was nearly doubled over from pain and nausea. I popped six or seven anti-nausea tablets, swallowed more painkillers, and tried to keep my head up as the drowsy high started to kick in. I do not say this to brag about my pain tolerance or to reify the myth of black strength. What I’m trying to do is to tell you that the woman sitting next to you is suffering, even if her face doesn’t show it.
It can take, on average, eight to twelve years to get a diagnosis for endometriosis. Along the way, many women are treated as hypochondriacs by careless providers. I have only recently gotten the courage to break up with my gynecologist, who performed my first surgery using somewhat archaic practices—cautery, when the most recent science argues that women have more long-term success with excision—and who began treating me, instead of my disease, like a problem.
Depending on how you count, you could say it took only three years from my first endo-related ER visit until my diagnosis. I’m blessed in that regard. But if you count a different way, it took seventeen years for a diagnosis. My symptoms started when I was fifteen. I began bleeding for no apparent reason for weeks at a time. My menstrual cramps were so severe that I missed school. I writhed around on my family’s living-room floor in pain, waiting for the minimal relief of low-grade NSAIDs. My mother and younger sister looked on with empathy, brought me soup and heating pads; my aunt, grandmother, and cousin received my mom’s phone calls for advice with sadness: It just runs in our family, they said, only two uteruses left among the five of them.
Endometriosis is idiosyncratic, and while many of its symptoms should be telltale, it can only be diagnosed via surgery. It often causes many more problems than painful periods and infertility, problems like pelvic-floor dysfunction, which makes sex difficult and at times impossible; higher rates of infections; depression; anxiety; chronic fatigue; vulvodynia; anemia; insomnia; all sorts of digestive problems; and unexplained bleeding. It often occurs alongside interstitial cystitis, which my specialist thinks I might have. Endo can grow anywhere in the body, and I have—in support groups—interacted with women who even have endo in their lungs. A few studies report rare cases of endo on the brain. The adhesions that accompany endo cause organs to fuse together (in my case, ovary to intestine; I could never get into deep twisting poses in yoga because of this). The characteristic stabbing pains often extend from the abdomen to the pelvis and legs. Sometimes endo makes it difficult to walk, let alone run or jump or dance. My legs and abdomen carry semipermanent splotches from the heating pad I sleep with most nights. They’re part of what Caroline Reilly calls “the endo look” in her essay about endometriosis for Bitch magazine.
With one poorly done surgery under my belt and lots of scar tissue and new adhesions to show for it, I can no longer do high-impact cardio workouts. My five- or six-day-a-week workout regimen has declined to a meager one to two days, if that. It’s a great week if I work out twice. Sometimes, if I push myself in an attempt to spite my new physical limitations, I bleed. Forty minutes of Jane Fonda’s Lean Routine Workout (my favorite) = bleeding; too much kicking during Paula Abdul’s Body Sculpting Dance Workout = stabbing leg and pelvic pains; too excited while dancing to my eighties Soul Train playlist on YouTube = being out of commission for the next week. Now I mostly settle for gentle yoga, which does not suit my aggressive personality. I have gained so much weight since my surgery that I have gone up two pants sizes, so much weight that I am self-conscious about my body in new ways. Now it’s not just the fear of having an accident in public, flooding my pants or a chair with blood as I have several times—the worst of which occurred in my favorite Nashville restaurant—but also the fear of being judged. I am working on being kinder to my own body and to the bodies of other people, on releasing long-held patterns of fat shaming and replacing them with something radically new for me: acceptance, empathy.
Many women like me require repeat surgeries until menopause—and some even beyond. After full hysterectomies, some women still find ways to grow endo—or, that is, their bodies grow it without their consent. My second surgery is scheduled for May 2018, with a specialist I drive three hours to see. As an academic, I have to schedule surgery during the summer to avoid missing too many classes. My next surgery is scheduled for exactly one month after my book tour is supposed to start. I waited until the last minute to tell my publishing house. I don’t want to get a reputation for being unable to do things. I told myself that if book-related opportunities arose, I would reschedule the surgery somehow, even though my pain has been increasingly worse for the past six months, even though my surgeon books eight months in advance.
There is no cure. All of the therapies for endo—other than diet change, which can reduce pain but does not eliminate it—involve shutting down the reproductive organs. One off-label prescription forces women into menopause. It causes an increased risk of osteoporosis and MS-like symptoms. Nearly all the women I have seen in support groups regret this medication and say it has ruined their lives even more than the original disease. The other options are hysterectomy (see above) and the constant use of the birth-control pill, with no pauses for the placebo pills that cause a period. After trying many formulas, I’ve had to accept the fact that the pill does not agree with my brain chemistry. (It makes all my baseline depression and anxiety worse.) I would like to have a baby one day. So I manage my symptoms by taking pain medication and adhering to a very restrictive diet—vegan, gluten free, soy free, sugar free, alcohol free—a diet on which I cheat regularly because who can sustain it?
I take two prescription NSAIDs for everyday pain and two prescription opioids for acute pain about fifteen days a month. The bright side is that the opioids have sometimes helped my chronic hormone-related insomnia. On a good day, when the meds kick in, they can feel like a heavy antianxiety blanket weighing me down into restful sleep. Other nights—and I can never predict when this will occur—the medication keeps me up with a rapid heartbeat and racing thoughts. Though the insomnia is not pleasant, I get a lot of writing done on these nights, often begrudgingly. I write on the Notes app on my cell phone, and though my husband is the heaviest sleeper I have ever known, I put the backlight on the dimmest setting and the keyboard on silent. Eventually, I fall asleep, around five or six A.M, just in time for my neighbors’ unruly foster dog to commence his daily barking fit and wake me up again.
I am not addicted to the opioids. For me, they come with very little ecstasy or euphoria, and one of my prescriptions makes me too nauseated and paranoid for me to want to abuse it. Yet because of my fear of being denied my prescription refills, I ration my twenty pills of Norco and sixty pills of Tramadol almost obsessively. I fret over whether I should take one now or wait it out, take one now or wait it out.
I am grateful for an extremely supportive husband, a good health-insurance policy, and my newfound assertiveness with medical practitioners who haven’t served my needs properly. I appreciate the caring bedside manner of my acupuncturist, my pelvic-floor therapist, and my primary-care physician in particular. She is the first doctor who has listened to me, really listened to me. She practices narrative medicine and dictates our discussions at length into a small digital microphone. She spends forty minutes per appointment, offering a holistic examination and new approaches to managing my pain and other symptoms—supplements and vitamins as well as prescriptions. A month ago, she sent me home with four new prescriptions. And that’s another area in which I am privileged. I could afford to break up with my bad doctor and find a new one and then an out-of-state specialist, but many women with endo don’t have access to good physicians, and let’s not get started on women’s reproductive health care more generally or health insurance.
The other bright side of my pain is that I have all these stories to tell, and I’m telling them, though with some trepidation. I fear these admissions will inspire intrusive biographical questions from friends and family, that I will become, involuntarily, some kind of mouthpiece for something before I am ready. That something is gruesome: it involves blood and bodily dysfunction, vaginas. That something affects my writing, my productivity.
What I am trying to do here, in this piece, is fight my anxiety—or acknowledge but work around it, as my therapist says—about coming forward with my struggles. I will continue to tell whatever stories I feel I must tell. I feel empowered by the recent and forthcoming narratives by writers like Porochista Khakpour, April Gibson, and Esmé Weijun Wang, writers who are very honest about their own struggles with different but still invisible and chronic illnesses. One in ten women suffers from endometriosis. I hope this account and the stories in my collection, Heads of the Colored People, will resonate with someone. At the very least, they will contextualize why I always cancel plans with friends.
I’m digging your collage back out of the trash. Yes, it’s probably soiled now, and yes, it’s ugly, and yes, it’s a little embarrassing. But you can’t see us if you won’t look at us.
Nafissa Thompson-Spires has written for StoryQuarterly, Lunch Ticket, and The Feminist Wire, among other publications. Her new book, Heads of the Colored People, will be published by Simon & Schuster this week.