by Chelsea Devona
As a disabled person, I knew I’d be guaranteed a tough pregnancy. My most prominent disability, celiac disease, means that even in just my regular life I experience malnutrition and poor nutrient absorption, weakened immune system, GI distress and pain, chronic muscle and joint pain, frequent painful skin rashes, and anemia–which also makes me constantly wildly tired. My celiac disease has caused or exacerbated other health issues such as chronically dislocating ribs, asthma, insomnia, an anxiety disorder, and rheumatoid arthritis.
I knew in a pregnancy I’d most likely have lots of nausea and some vomiting for the first trimester, feel even more tired than usual, need to take iron supplements to stave off pregnancy-induced anemia, and my muscle aches and pains would worsen. Okay, I was prepped for that.
But I had no idea how much more awful it would be.
When I did start throwing up almost as soon as I discovered I was pregnant, I was actually relieved at first. Nausea and vomiting can be a sign of a healthy pregnancy, and because of my celiac’s I was eternally worried of miscarriage: “glutened” (accidentally ingesting gluten) doubles or triples the miscarriage risk in people with celiac. So I viewed nausea and the occasional puking episode in the bathroom as an indication that I shouldn’t worry about my baby: they were doing well so far.
But rather than the “small handful of vomiting” episodes that my pregnancy books promised me, I became debilitated by them. This was my first indicator that something was really, really wrong: after all, I have celiac. GI pain that would be debilitating for someone else is just a day in the life for me: I’ve learned to work with it because I must. My OB-GYN just thought I had bad morning sickness, but this was beyond any morning sickness I’d heard of.
It wasn’t just the vomiting: my nausea was so bad that less than five weeks pregnant, I was living on crackers and fruit popsicles and would vomit at the smell of anything cooking. I was barely sleeping, wildly exhausted, and fighting off headaches; I missed several days of work because I couldn’t stop vomiting and was so malnourished that I became increasingly confused, dizzy, and weak. In order to make it through even a limited work day, I had to be on bedrest the entire time I was at home.
Ironically, I was constantly starving. If I got too hungry, I’d throw up; but if I ate the wrong thing, I’d also throw up; but if I ate too much of the right thing—but if I ate too little—or if I ate too slow or too fast—or—or—or—
You get the idea: everything, even the smell of non-food items like soap, could provoke vomiting. And my OB-GYN still thought this wasn’t concerning. Naively, I second-guessed myself and thought maybe I was just being weak, that this was normal.
When my wife and I found out I was carrying twins, we thought perhaps that was the reason I was feeling so sick (women with multiples are often sicker than women with singletons), but my symptoms continued worsening.
On Christmas Day, when I started throwing up, I couldn’t stop. By this point, I’d lost over 7% of my pre-pregnancy weight but couldn’t keep down even water or ice chips, much less food. During the night I began vomiting up blood.
At the ER the next day, I stared at the diagnosis on my discharge papers: hyperemesis gravidarum.
Hyperemesis is a disability I’d read about in my pregnancy books, with vague descriptions like “the morning sickness from hell” and “if you think you have this, get thee to a doctor ASAP.” But my life—already affected by pregnancy—was completely upended by this disability, which affects approximately 0.3-2% of pregnancies.
To call hyperemesis “the morning sickness from hell” is like calling a tsunami a rainstorm. Fortunately, treatments such as IVs and prescription-strength anti-nausea meds helped significantly. Unfortunately, these treatments caused their own problems too.
Hyperemesis is actually a disability thought to have led to Charlotte Brontë’s death, as she was afflicted with serious vomiting and nausea. Scholar Hannah Copley notes that Charlotte Brontë was afflicted by “perpetual nausea and ever recurring faintness,” so sick that even seeing food would cause nausea. Brontë’s maid is purported to have said, “a wren would have starved on what she ate during those last sick weeks.” Without IVs, anti-nausea drugs, and other medical interventions, HG was likely a contributing or main factor to Charlotte Brontë’s death.
I can absolutely believe that if I had contracted HG without modern medicine, it would have led to severe complications for me as well, and possibly the death of my babies. After recovering in the hospital and returning home, the medications allowed me to keep down enough water and food to avoid hospitalization; but it by no means could make me well. Don’t get me wrong, it was night-and-day different: medication allowed me to rehydrate and to eat some things. But medication could only do so much.
How was my disabled pregnancy with hyperemesis different from a healthy person’s pregnancy?
In a healthy pregnancy, up to 20% of women don’t experience any nausea, and over 50% of women don’t vomit once. The average pregnant woman experiences some nausea between weeks 6–14 and, if she vomits, will only do so for approximately 6 days.
In a healthy pregnancy, a woman can eventually make herself food, and healthy nutrition is stressed emphatically, the implication being that if you don’t eat right and take your vitamins, your baby will suffer or have birth defects.
In a healthy pregnancy, a woman doesn’t need to be hospitalized.
Now, gazing into the eyes of my twin boys, I have absolutely no regrets over conceiving them. But hyperemesis gravidarum is wildly awful, even when treated—and it’s life-threatening if not.
Chelsea would like you to know:
If you or a friend you know thinks their morning sickness is worse than normal, you don’t have to suffer alone. Check out the Hyperemesis Gravidarum Foundation’s criteria for HG, and advocate for yourself at your doctor’s before it worsens.