Medical Examiner

My Extreme Form of Morning Sickness Was Terrible. Not Being Believed by My Doctors Was Worse.

Hyperemesis gravidarum is dangerous, and treatable. Why does the medical community still ignore it?

A woman kneels over the toilet in misery.
Photo illustration by Slate. Photo by monkeybusinessimages/iStock/Getty Images Plus.

It wasn’t until the third OB-GYN discounted my symptoms with a casual, “Morning sickness is a doozy isn’t it?” that I started feeling mildly conspiratorial. It had only been three weeks since my positive pregnancy test, but I had already lost 17 percent of my body weight. My urine was orange. I constantly felt dizzy and lightheaded and was unable to keep water down without vomiting. Food was out of the question. Somehow, all these symptoms were met with cheery suggestions to “try ginger” or “power through.”

I had a gnawing suspicion that my morning sickness symptoms were a bit more extreme than the norm, to the point that I worried they were potentially harmful to my baby and me. But every medical professional met me with a slightly exasperated alcohol swab under the nose (to stop me from vomiting in their offices), a condescending nod, and a soothing tone reserved for delusional patients that said, “Yes, yes, I know, every woman thinks her morning sickness is serious.”

It was a glorious ER visit that finally confirmed my suspicions. “Why didn’t you come here earlier?” the physician asked me. My symptoms weren’t “normal.” I had an extreme form of morning sickness called hyperemesis gravidarum that affects 1.5 percent of pregnant women. Best known as the shitty illness Princess Kate Middleton had, it is characterized by severe nausea, vomiting, and weight loss that jeopardizes the health of mother and fetus, hospitalizing at least 60,000 U.S. women a year. Before intravenous fluids were introduced in 1950, it was one of the leading causes of maternal deaths.

I found it strange, considering these facts, that I had been met with so much suspicion by OB-GYNs, when they could very easily diagnose me through a urine sample (to measure ketones) or a measurement of my weight loss. Why was I treated like a hysterical woman they needed to shuffle out of their offices instead of someone suffering a clinical illness asking for a basic bag of fluids? Why did they treat me like a hypochondriac instead of a strong woman at the end of her rope?

The ER diagnosis didn’t change much about the way my doctors treated me. They were still bored of my complaining. I was bored with puking ginger, so like any millennial, I sought solace online. Hosts of “hysterical” women roared in desperate corners of the internet, in Facebook support groups and Reddit feeds. Women were commiserating in collective despair over the continual brushoff from their doctors only to miscarry, abort, or pay multiple ER bills.

These communities became the fragile sanity-confirming lifeline I clasped from my dismal bedroom corner. Each pound lost and vomit tallied were nursed by the freedom this safe space provided me to be alarmed about weight loss and popped blood vessels without criticism. One woman who lost 65 pounds shared a picture of herself emaciated in a wheelchair proudly wearing the PICC line the doctor finally prescribed her. Two women who had undergone chemotherapy for cancer shared how hyperemesis was “by far the worst experience” of their lives. Women who were otherwise mentally fit described themselves as suicidal. Women bemoaned partners who thought them “lazy.” Support reigned down through the thoughts, prayers, personal testimonies, and therapists’ phone numbers. The lucky few women with understanding OB-GYNs passed around their information as if they were drug dealers.

Throughout the months of my pregnancy, the users of these groups changed, but the posts remained unsettlingly unchanged. “Anyone else experiencing hallucinations?” a young expectant mom inquired. “This is my first pregnancy. I am under a lot of stress. Maybe that’s it.” “I was back in the ER today. … I fractured a rib,” a seasoned HG survivor lamented. “First visit to the dentist post-pregnancy. I have 9 cavities!!” shared Ashley. And the one we all dreaded, “We lost our little one this week. Please pray for us.”

To this day, there is no medical consensus about the cause of hyperemesis. Throughout the 19th and early 20th centuries, doctors proposed countless theories for the fatal maternal illness— uterine lesions, stomach neurosis, progesterone imbalance—but found no conclusive results. For the most severe cases, the only remedy was abortion, something that at the time was oftentimes fatal for the mother anyway. But medical research at the time had one gleaming catchall that accounted for countless other misunderstood female illnesses: hysteria. Like polycystic ovary syndrome, PMS, postpartum depression, lupus, fibromyalgia, dysautonomia, and others before it, the pesky HG problem was solved with this encompassing diagnosis.

It’s called “the hysteria problem.” Countless physicians I spoke with for this article used this term to describe the way women get labeled with psychosomatic or hysterical problems when there is a medical problem that a physician can’t diagnose. The logic goes: If it can’t be diagnosed medically, it must be psychological. If we can’t figure it out, it has to be in her head. “Despite the fact that HG was a major contributing factor to maternal death before the middle of the 20th century, it continues to be dismissed as psychological, leading to poor patient-provider relationships and undertreatment,” explains Marlena Fejzo, a geneticist at the University of California, Los Angeles. “The problem stems from not knowing the real cause of the condition, and the stigma of the ‘hysterical’ pregnant woman perpetuates this misogynistic psychological theory. ”

It’s not surprising that the uterus, in all her mystery, became the scapegoat for a multitude of female illnesses, or that these illnesses would signal psychological weakness to such a uniformly penis-bearing group of medical researchers. What is surprising is how little it has evolved since then, even as medicine has diversified, and how physicians’ responses to the illnesses still somehow echo Freudian theories and treatments despite studies to the contrary. Fejzo told me about hearing, in a class she was sitting in on to monitor, a female obstetrician explain to her medical students that women with HG often “don’t want to be pregnant” and “don’t want to feel better.” She was generous in attempting to explain how this still happens: “It takes time to change the medical textbooks that influence a generation of doctors.”

Hysteria is, after all, a four-millennia-old ghost. It developed in ancient Egypt and Greece with the belief that a uterus wandering throughout the body could account for any number of disorders: kleptomania, epilepsy, depression, etc. The cure was “sexual activity,” a treatment that stuck around even as science advanced hysteria beyond the “wandering uterus” hypothesis. Hysterical women in the middle ages were brought to orgasm by their husbands or doctors to purge their “offending liquid.” Freud proposed sexual intercourse in the 19th century to heal the hysterical woman of her penis envy.

Eventually, medical advancements allowed wandering uteruses and penis envy theories to be embarrassingly shrugged off, but the blame for the conditions women were suffering simply shifted from the uterus to her mental, emotional, and psychological fragility. This is how hyperemesis gravidarum became a “tool for secondary gains,” a mentally unstable woman’s imagined sickness to get what she wants. “Hysteria is the principal cause of hyperemesis,” begins a 1905 article in the Journal of Obstetrics and Gynecology. “Vomiting first commences when such women realize that vomiting is expected of them … an unwelcome conception may be a cause.”

Treatments involved not just abortion but many of the popular psychological treatments of the time: bleeding through leeches, thalidomide (which resulted in babies born with limb deformities), cocaine (widely used in the 19th century), mercury (used as late as 1922). Women were also injected with their husband’s blood. Even as the introduction of intravenous fluids in the 1950s significantly dropped the death rate, the folklore that it was an imagined illness remained. A 1955 article in the Psychiatric Quarterly elucidates some of the more popular HG theories: “Nausea and vomiting have been considered an unconscious manifestation of oral rejection of the fetus, a repudiation of femininity, self-punishment, and punishment of the father.” The writers linked it to women with a “compensated schizoid character formation” and believed it less likely in women who are “stable, happily married and desirous of having a child.” They also detail treatment ideas: “Use a little psychotherapy,” says one. “Send them home to their mothers,” says another. “Give a woman a quiet room to herself without an emesis basin.”

Hysteria was finally removed from the Diagnostic and Statistical Manual of Mental Disorders 40 years ago, but its spirit lingers. “Undiagnosing” illness is not as well-practiced as its inverse, and not as easily done. Peer-reviewed medical journals as little as 10 to 20 years old still espouse theories that HG is a means of avoiding sex or an unconscious wish to orally expel the fetus. As HG fatalities in the U.S. have dwindled, so too has the urgency to uncover the real roots of the disease and possible treatments. Because the disease has become less dangerous, the OB-GYN with regressive ideology can seem relatively harmless—the woman will be dismissed, belittled, blamed, but she’ll survive, and eventually, it will end, usually with the birth of a baby.

There’s limited research looking into what causes the condition, which Fejzo said she finds “alarming.” In her own studies, she collected research from countless women whose ribs fractured, retinas detached, eardrums burst, or esophagi tore from the violence of the vomiting. Women who were unable to keep water down without vomiting. Women who have suffered brain damage caused by vitamin B1 deficiencies, and children who have neurodevelopmental delay as a result. She even found women in the U.S., albeit rare, who died from HG. Fejzo knows all too intimately this reality. In 1999, after battling HG’s paralyzing nausea and uncontrollable vomiting, she lost her baby in the second trimester. The loss overwhelmed her, which is part of why she took the study of HG into her own hands, pioneering studies for some of the most groundbreaking HG research to date. She and her colleagues have discovered that the placenta and appetite hormone GDF15 and its receptor GFRAL, located in the vomiting center of the brain, contribute to the severity of nausea and vomiting of pregnancy. “We finally have some strong scientific evidence to explain the biology behind this condition,” Fejzo celebrated in an email. “These studies found that women carry genes that predispose them to have HG and these genes have nothing to do with a woman’s psychological state and everything to do with placenta and appetite.” It’s the scientific “I told you so” that every HG survivor has waited for.

Fejzo’s studies also proved that there are basic treatments that can help tremendously. Aside from regular intravenous fluids to prevent dehydration, the off-label drug ondansetron (Zofran) has been linked to fewer miscarriages and higher live-birth rates than women not using it. This is the same drug that my OB-GYNs showed resistance to prescribe or even mention to me and other women with HG. (Fejzo’s research showed that too.) There continues to be low rates of antiemetic prescriptions being reported prior to and upon discharge from hospitalization due to HG even though the risks associated with medication during pregnancy are far outweighed by the potential risks of severe HG. Fejzo’s studies, for example, have showed that Wernicke’s encephalopathy (brain damage caused by vitamin B1 deficiency) is on the rise for women suffering HG.

The medical complications don’t begin to speak to the extreme emotional and psychological warfare women experience when bearing these physical wounds to a doctor who treats her like she’s faking it and elusively withholds basic treatments.

After five visits to the ER and 25 pounds lost, the fourth OB-GYN I was seeing finally prescribed Zofran, though not until my sixth month of pregnancy. It took the edge off of the symptoms just enough to let me keep water and some food down. I wasn’t thrilled that a doctor who seemed to consider my health concerns melodramatic for the first six months would be delivering my baby, but I was physically and emotionally exhausted, and dejected enough to believe that “this might just be as good as it gets.” It’s the resignation a lot of women with HG make, that perhaps being believed is too much to hope for, that finding a doctor who will give you the treatment you need is too much to demand. It’s enough, frankly, to make a woman hysterical.