In early February last year, I found out I was pregnant. A week later, I started to experience nausea. Run-of-the-mill morning sickness, right?
A few days later I had the chilling thought that I’d probably be sick all day, every day for weeks to come since I was so early in my first trimester. The thought of having to push through being sick for that long was overwhelming.
By the end of that weekend, I had tried all the usual morning sickness suggestions to little avail, and was desperate to get to my first doctor’s appointment.
Looking back on it now, I don’t know how I got myself to work on Monday while I waited for my Tuesday appointment. I feel a lot of sadness and compassion for who I was in that moment: sick, struggling, losing.
At that point, I still hadn’t realized that any of this was abnormal.
I didn’t know that most people’s morning sickness isn’t unrelenting. Or that my morning sickness onset was early and severe. Later, I learned that my pregnancy hormone levels were also higher than expected.
Luckily, my doctor recognized it all right away. She told me I shouldn’t be that sick that early in pregnancy.
We spent the appointment discussing how to keep me from being hospitalized and I left the appointment with a presumptive hyperemesis gravidarum diagnosis.
Somehow, I still drove straight from my appointment to work. When I met with my supervisor to give her my doctor’s note, I didn’t even know how to pronounce ‘hyperemesis gravidarum’.
I made it through a week before I had to go out on leave — I spent the rest of my pregnancy at home.
What is Hyperemesis?
Hyperemesis Gravidarum (HG) is pregnancy disease characterized by severe nausea or vomiting. Hyperemesis is rare, estimated to impact about 1-3% of pregnancies based on hospitalization numbers.
Like so many women’s health issues, HG is under-recognized, under-researched, and under-funded.
There isn’t even a uniform diagnostic criteria for hyperemesis to be able to study it better. Generally, women diagnosed with hyperemesis gravidarum present with indicators of starvation or dehydration and significant weight loss.
The Hyperemesis Education and Research Foundation has a great overview of the toll hyperemesis gravidarum takes on women, their babies, and society overall that you can find here.
The TL:DR of it is that women with hyperemesis starve and suffer for months on end — possibly their whole pregnancy. Many are unable to work and require hospitalizations. They face mental health challenges and socioeconomic vulnerabilities both during and after pregnancy. The malnourishment and bodily stress also pose potential risks for the baby, including early birth.
On the societal level, hyperemesis gravidarum is costly not only because of the medical and hospital costs, but also the lost earning potentials of those unable to work — to say nothing of the burden placed on caregivers.
My Hyperemesis Experience
In a lot of ways, I had a charmed hyperemesis experience compared to others:
- My doctor was proactive and kind.
- Starting Zofran early spared me from vomiting 20 times in a day.
- I only had to be hospitalized once.
- I wasn’t socioeconomically vulnerable.
But hyperemesis gravidarum took a toll and, seven months postpartum, I am still recovering.
My hyperemesis was most intense the first half of my pregnancy, but I felt sick and struggled to eat throughout the whole pregnancy. Around the time when my hyperemesis lessened (but never went away) my cervix started giving way, making for a complicated pregnancy from start to finish.
Hyperemesis is a very isolating experience and my life ground to a halt as I spent my days alone on the couch. My pregnancy complications also took a toll on my partner who very suddenly became a caregiver about 8 months earlier than expected.
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I went into pregnancy already on the cusp of an underweight BMI, and still somehow managed to lose over 10% of a my body weight pretty rapidly. I struggled my whole pregnancy to try to gain it back.
Having been always been very food-focused and a huge eater, it felt like I lost a big part of my identity (and joy!) when my body turned on food. Simple acts like wandering a grocery store or opening the fridge became physically revolting without warning.
You also don’t appreciate how central food is in human connections until it is taken away. No more sharing meals with friends, trying new restaurants, or cooking with family.
A lack of caloric intake takes a severe toll: even on my less-nauseous days, I was so depleted that doing something simple like going to Target to look at strollers made me feel faint and sick.
I went into labor prematurely, which likely was the result of my incompetent cervix — that’s the actual medical term — and not HG, but I sometimes wonder if my body just didn’t have anything left to give.
The day my water broke, I weighed less than when I had gotten pregnant.
Yet, perhaps the hardest part of hyperemesis for me was the mental persistence required. Despite the overwhelming evidence to the contrary, I constantly doubted that I was ‘sick enough’ to claim hyperemesis as my own.
I read other women’s stories that were full of incessant vomiting, PICC lines, feeding tubes and extended hospital stays. I worried every single day about whether I was sick enough to justify being out of work, or whether I could try harder: try harder to work, try harder to live, try harder to eat.
I felt weak and dramatic,
- even as I watched the number on the scale drop,
- even as they found ketones, a starvation indicator, in my urine,
- even as the nurses and doctor told me “the sickest ones never complain” as I got checked into the hospital for nutrients and fluids.
In some ways, I was relieved when we discovered my cervix was yielding at 23 weeks because it wasn’t negotiable — no amount of strength or willpower could fix my cervical funneling, and the doctor ordered me to stay on modified bed rest. The more time spent in prone position, the better.
I’d be lying if I said the doubt doesn’t still creep in sometimes. I tell people regularly how I weighed less at delivery than before pregnancy so they appreciate the abnormality of my experience, but also to justify it to myself.
Postpartum recovery has been long and hard.
You’re decidedly not supposed to be the thinnest you’ve ever been in your life less than a week postpartum — something I regularly have to explain to well-meaning strangers commenting on my postpartum body. This has been compounded by the expectations that this all was supposed to be over and I’d be normal again as soon as I gave birth. My own expectations especially.
Of course that isn’t what happened.
I had spent my bed rest days dreaming of all the things I’d eat on my postpartum recovery tour (my rumspringa, as I called it). In the hospital after delivery, I only ate blueberry muffins.
My OB’s response? I wasn’t supposed to be sick anymore and should be able to eat normally.
She wasn’t alone in that thinking. After hearing about the baby, everyone in our lives wanted to hear that I was back to being the eater I always was. I felt like I was disappointing people when I couldn’t give them that resolution. That people wouldn’t know how to proceed when my answer was more tentative and complicated.
It took about a week postpartum until I finally felt hungry, and a couple more weeks to get to where I was mostly eating like a real person again. I have some lingering aversions but less than I expected all things considered.
Physically though, I was just spent.
I got light headed every time I stood up for weeks after delivery. I wasn’t able to do any baby care while we were in the hospital. Lightheadedness isn’t a great side effect when you’re spending your days picking up a fresh, fragile newborn.
Months of physical therapy and low-impact exercise have helped me gain back some strength, but I’m still working on building back up my body’s reserves again.
It took months after delivery before I started recognizing the emotional toll the whole experience took on me.
There was no discussion of how to recover from hyperemesis at my six-week postpartum appointment with the high-risk practice, aside from everyone being glad to hear that I could eat again. On the whole though, I thought I was doing a really good job working through the hard pregnancy.
My baby blues focused heavily on sadness around my pregnancy experience. Even though I hated being pregnant, I was weirdly nostalgic for pregnancy, especially the pregnancy experience I missed out on.
Grocery shopping was an emotional minefield for awhile. Every time I managed not to cry as I was flooded with reminders of my safe foods and imaging of my partner wandering aisles trying to divine me something to eat was a victory.
Going to the store was also a reminder of all the little, normal things I couldn’t do for so long. For someone who always loved a grocery store, each trip to Aldi was an exercise in finding myself again.
My identity had been ‘a sick person’ for so long. But with time and work, it got easier to grocery shop without crying. It felt like it was getting easier to be me again, and that I was doing well recovering.
Then I tried to go back to work at three months postpartum. I completely fell apart.
I was unable to cope with leaving my baby and couldn’t get through the day without crying.
It felt so wrong, like in-the-core-of-my-being-wrong, to leave this baby that I had starved for and worked so hard to keep alive.
No one told me I had to go back to work when I did. I made the choice, but it was driven by my guilt over my long medical leave and internalized American postpartum expectations.
By U.S. standards, I was so lucky to have a supportive job and I put a lot of pressure on myself to pay back all the kindnesses I was shown as soon as possible.
I wanted to be a stellar employee but instead I spent my days crying alone in the bathroom or in traffic trying to get home to my baby.
Assuming I had postpartum depression, I called my regular gynecologist right away.
In some ways, it felt almost poetic to be once again, almost exactly a year later, waiting desperately for my doctor’s appointment and struggling to manage work.
My Current Recovery Stage
I saw the same doctor who diagnosed me with HG, and she was once again wonderful.
She told me that I wasn’t recovered from the hyperemesis gravidarum and cervical incompetence bed rest. Even the best of pregnancies aren’t recovered at three months, so to think I would be recovered from my highly complicated pregnancy and starvation was pretty preposterous.
She referenced wartime research on prolonged starvation and its lasting cognitive effects. She said you need to take in way more calories than normal to cue your body that you are no longer starving.
Until this point, no one had ever said the word ‘starvation’ to me.
I had to increase my calories as much as possible, work on my sleep, and follow up with extensive lab work and a nutritionist. On one hand, everything she said made complete sense and was a relief. On the other, I was angry that no one had mentioned the prolonged recovery or re-feeding considerations during my obstetrics visits.
And I was so sad that there wasn’t an easy fix.
The next day, I saw a psychologist and she echoed the doctor’s sentiment. My pregnancy was not normal. I am not recovered and am depleted. I did not have the reserves to cope with leaving my infant, working and recovering simultaneously. At our very first appointment, she floated the idea of me going back out of work.
It took almost two months of appointments to be able to accept that decision and restart maternity leave; to work through my feelings of failure and worries about my identity, relationships and professional future.
Again, I find myself struggling with self-doubt. Doubting whether I’m really not recovered enough to justify being on work leave, wondering if I’m weak. I recite the psychologist’s words to myself often to quiet the doubt.
I’m honestly not through this season of hyperemesis yet, and I imagine I’ll get more insights as time passes. This still feels fresh, raw, hard to write.
But I feel like this latest leg of the hyperemesis journey is perhaps the most important to share because I don’t think I am alone here and don’t want others to be caught unprepared.
Because I’m sure there are other HG women like me:
- walking out of their six-week appointment without a discussion on hyperemesis gravidarum recovery,
- dealing with the emotional ramifications of being depleted,
- struggling at their desk to keep it all together,
- or feeling themselves falling apart, seemingly without reason, after only a few errands in the day.
I don’t blame my high-risk ob for overlooking this part of hyperemesis. Pretty much anyone who has ever given birth knows that the American standard of only one postpartum appointment is insufficient and ridiculous.
Until there is meaningful change to postpartum care, we have to fill in the gaps for ourselves by swapping our stories from the trenches.
So that’s my hyperemesis gravidarum story. Longer and more ongoing than I hoped it would be.
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