It was 3 in the morning and I hadn’t slept all night, listening to the crickets and the sound of my husband’s snoring and trying to find a spot on the Murphy bed in my parents’ guest room that wouldn’t creak with every move I made. The hours until sunlight arrived stretched out behind and before me. I felt trapped in the darkness, the same way I felt trapped in my body. Nothing could make me sleep, not a warm bath or a boring book or three entire doses of Benadryl; the stress hormones would rise to match whatever I used to counter them. My fear was no longer contained in my head but pulsed through my body, a living thing. I went to the bathroom and vomited again. I was 6 weeks pregnant. Somehow, at some point, the sun came up. My mom and my husband took me to the hospital.
What I didn’t know then was that the anxiety that had been my faithful companion all my life was running amok in my estrogen-soaked body. That cocktail of hormones and fear — my three earlier pregnancies had ended in miscarriages, and I was terrified this one would too — had left an indelible mark on my body in the form of nausea: intense, unrelenting, visceral nausea and vomiting that would see me hospitalized five more times during the course of my pregnancy. The nausea raged and, as it intensified, so did my anxiety; when it abated, which was rare, the anxiety let up too.
What I didn’t know then was that I was in the throes of a little-known condition called cyclic vomiting syndrome, a disorder that was likely “turned on” in my enteric nervous system by the fear and the pregnancy hormones. The nausea and vomiting would revisit me again after weaning my son, six months after he was born, and again after that. It generally descended one week before ovulation and lasted 10 days. One time it lasted a month, and I had to seek help. What I didn’t know then is that as much as anxiety is a mental illness, growing in dark synapses and neural pathways, it also lives in the body — in the tightening stomach, the knot in the gut, the dizzy head, the tingling extremities, the racing heart.
Anxiety has always been something I feel in my body at least as much as my mind.
The truth is that anxiety has always been something I feel in my body at least as much as my mind. When I was very young, before I even had words to name my fears, I knew I was anxious by the gnawing feeling in my stomach that rolled around on the first day of school and the nights when my parents left us with a babysitter. Years later, when I got engaged, I avoided letting anyone take close-up photos of my engagement ring. My nails were still frayed and uneven, and I couldn't stand the thought of memorializing them. Getting a manicure for a friend's wedding that year, the manicurist called her coworkers over to look at my nails.
"You bite them too much," one woman told me. I nodded and smiled, my face heating up. The anxiety, at least, I could hide behind a veneer of accomplishment, social graces, and deflecting questions. The nails were visible signs of an inner reality.
The weekend after I found out I was pregnant with my son, in September 2017, my husband Zack and I took a trip to Mendocino. We drove along the California coast the whole way from San Francisco, and I wrote in my journal that I was scared but that I also felt like I was being prepared for something. We went for a long hike and stopped at a waterfall. I couldn’t believe, really, that this pregnancy would last, but I tried to believe.
I didn’t order wine at dinner. I ate a Snickers bar after lunch on the rocking chairs outside our hotel room, smearing chocolate on my yoga pants while I watched the Pacific crash onto the rocky shore below. I was happily withdrawn from my life. I was a week away from being gripped by nausea; eight months away from the relief of giving birth; two years away from reading anything about a disorder called cyclic vomiting syndrome. We watched a movie that night and I fell asleep halfway through, dreaming a dream in which this baby got lodged in my stomach and couldn’t get out. I woke up to a dark and quiet room. It was 3 o’clock in the morning.
So much has been written about the topic of women and sickness that I am hesitant to add to its annals. Surely many have endured much worse than I have; why does my small life count? But that’s exactly the feeling that anxiety creates — that one person does not matter, that you are alone in your fear, that you are, in fact, an island. So I stand on my own historical record, sharing it as salve, as a way to say "you are not alone" to anyone who might recognize themselves in what I have to say.
One particular study noted that cyclic vomiting syndrome mimics a pheochromocytoma, a tumor on the adrenal gland that secretes stress hormones. When I am sick, I feel like every nerve ending in my body has been set on fire and is constantly communicating danger, panic, and alarm. At the same time, my stomach is twisting itself in knots and trying to rid itself of everything that has ever entered it, including its own acids and bile.
Typical remedies for nausea — ginger, saltine crackers, seasickness wristbands — do nothing to touch the enormity of the sickness, but an empty stomach makes the nausea worse, so I have to try to eat. On the days when the sickness is at its worst, I want to go to sleep and never wake up again. But the thought of sleep on those days is like a cloud on a distant horizon — unattainable.
The thing I am most afraid of when I am sick is being by myself. "My mind is a neighborhood I try not to go into alone," Anne Lamott writes, and that is how I feel when I am sick — because then my mind has no borders against which to stop its terrible spinning. When I am sick and alone, I am convinced that the sickness will never end, and that I will never get back to being my healthy self, who loves to hike and write and watch my son endlessly throw a small orange ball through a plastic basketball hoop. My fear that I am a bad mother is one of the worst fears of all; I feel unfit to be around my son, afraid that in my imperfections and limitations I am failing him, that he would be better off without me. This is something I haven't told anyone; it is my secret shame.
At 31 weeks pregnant, I flew with my brother to Utah to visit a friend. She had warned us that her kids were sick, but they were doing better when we arrived. I genuinely believed that, since I was already so sick all the time, things couldn't get worse. It turned out that what they had was likely norovirus, and when my brother and I arrived back at our hotel room one night, I started vomiting every five minutes.
We had just finished the horror movie Vacancy when I started to feel my stomach twinging, and there was a snowstorm outside, and it was close to midnight. Nothing in me wanted to leave our hotel room, but the vomiting wouldn't stop. I threw up 10 times before we finally decided that I should go to the hospital, and it was 5 miles down barely lit mountain roads in the middle of a blizzard to get there. My brother drove heroically while I puked into the laundry bag from the hotel room in the passenger seat of the car.
When we got to the hospital, they admitted me because I was so dehydrated that I had started to have contractions. "I don't want to have the baby in Utah," I said to the doctor. They gave me fluids, anti-nausea medication, and a room with a view of the Wasatch mountains. My vomiting slowed, and so did the contractions. My mom flew out to collect us.
In an odd way, I felt better being in the hospital than being at home. I felt a kind of safety there that I didn't feel anywhere else, and I didn't have to carry all the resentments that had grown in me toward the familiarity of my home. The presence of doctors and medicine and machines reassured me that I would be fine, that I could trust in the medical establishment, that once I returned for that ultimate hospital visit to deliver the baby, all would be well.
"You'll feel great once we get that placenta out of you," a doctor at another emergency room once told me. And he was right. I delivered my baby early on a Sunday morning; that night, I ate sushi for dinner.
I’ve sought help from doctors for my ongoing sickness, but none of them have been able to tell me exactly what is happening in my body. One tested my thyroid; another collected a stool sample; a third told me I must have celiac disease, which I do not. The sickness that had first struck this past April, nearly a year after giving birth, returned in late June for another 10 days, and then again in late July. Each time it was preceded by a panic attack.
The anxiety was palpable each time I got sick: My heart rate went up, my blood pressure skyrocketed, and I drew inward, feeling both charged and lethargic. I told my family, who tried everything they could — they accompanied me to the emergency room, called doctor friends, and asked about different kinds of medications that might help. They cared for me like I was a child, and all the time I felt like a miserable parent to the child I already had.
"You didn't ask for this," my dad would say to me on repeat. "No one wants to get better more than you." I sobbed in response. When he said that, I felt seen. I felt like a child, reduced to neediness for small comforts from my parents.
Pregnancy had been hard on my marriage, as Zack bore the brunt of my sickness. I was physically needy and unable to help myself much, but I also struggled with constant panic. My usually independent husband had to set aside his desire to relax or have any time to himself as I found myself afraid to be alone with my thoughts. I wanted him with me all the time; he could not be with me all the time. I resented his desire to do anything but be with me; he resented my clinging to him like he was the only life preserver in the sea.
So my sicknesses since the pregnancy have triggered us, sending us reeling back into those awful days. He remains steadfast and concerned about me. He remains frustrated at his inability to fix me. I remain panicked and clingy. We are trying to find our footing.
I continue to seek out doctors to help. Cyclic vomiting syndrome is what's known as a functional disorder; it affects how the body feels and works but cannot be detected by a simple test or examination. Generally, people with functional disorders — a category that also includes things like chronic fatigue syndrome, fibromyalgia, and irritable bowel syndrome — look normal to the outside world. These conditions are almost all thought to involve the brain and the nervous system somehow doing something wrong — but just what, and just how, are not well understood.
I want to stop worrying. I want to be well. The trouble is, you can want something to the end of the world and still never get it.
The gap between what is known and what is experienced is easily filled by the internet, particularly if you are research-inclined, and particularly if your doctors don't seem to share your sense of urgency. I have believed my diagnosis to be a million different things after internet research: excess serotonin from nutritional supplements, a mysterious food allergy, or acute intermittent porphyria.
The kind gastroenterologist I saw suggested “functional nausea” rather than cyclic vomiting syndrome, primarily because my episodes lasted so long. I wanted to tell him about coalescence, a phenomenon I read about online in which the patient's bouts of nausea run together due to excessive panic and continuous release of stress hormones. I entered his office armed with information; he told me that he was hesitant to prescribe certain antidepressants to his women patients because they frequently caused weight gain. “Not to be sexist,” he said. I smiled and nodded.
Still, the sickness pursues me and lays me out. Still, my ambitions are thwarted by those 10 days each month. A few things have helped, including an old tricyclic antidepressant called amitriptyline, which hasn’t stopped my episodes but has reduced their severity. Another medication, an atypical antipsychotic called olanzapine, stopped an episode that lasted the entire month of August in two doses. I’m about to start taking hormonal birth control in the hopes that it will stop the estrogen surges that I think are making me sick. (The gastroenterologist said that would be a “rare” explanation, but it’s my working hypothesis.)
I’m no expert, but after inhabiting my body for long enough, I think I know what’s going on. And I want to stop it. I want to be the person, the wife, the mother I know I can be. I want to stop worrying. I want to be well. The trouble is, you can want something to the end of the world and still never get it.
Sometimes I still wake up at 3 in the morning. At those hours, I berate myself for not being more productive, for not getting more done. I have limitations, part of my brain says. You are rotten and no good, another part of my brain says. You can never get pregnant again, you cannot produce life, you shouldn’t be here in the first place, go back to sleep. My rational mind cannot function. Those are the times that fear fills my body, and I know that I am in for 10 days of adrenaline and isolation. It is all I can do to survive. On some days, that is the heroic act itself.
I think of what my dad said to me — that I didn’t ask for this. That no one wants to get better more than me. Somehow, at some point, the sun comes up, and the countdown — to the next time, to the next twinge, to the end of feeling sick — begins. ●