Anonymous

I’m writing this with one hand, in the body of an email on my iphone while I snuggle my newborn son to sleep. I have started and stopped more than a dozen times. I don’t feel ready to write about this, to bring clarity and tidiness to an experience that was so complex, confusing, and painful. Yet writing this feels urgent — to continue processing it; to capture it now, when it’s still fresh; to offer it up to others who might benefit from reading it, and in so doing, help me feel that there was some greater value in experiencing it.

I am on the other side of hyperemesis gravidarum (HG), the “Amy Schumer/Kate Middleton disease,” as I came to call it. An estimated one to three percent of pregnant women experience HG, which presents as severe nausea and vomiting. It can cause dehydration, malnutrition, and debilitation. Some women lose up to 5 percent of their pre-pregnancy weight; women who experience severe weight loss are particularly at risk for negative fetal and maternal outcomes, including premature delivery. For many years, it was overlooked by researchers and doctors, and today awareness about it — even among medical providers — and access to effective treatment vary widely.

In every respect, I am among the fortunate HG survivors. I received effective treatment and compassionate care, and I was blessed to have a mild case that lifted about halfway through my pregnancy. At no point was my son’s health in question. I carried him to 39 weeks and he is a healthy, thriving baby. And I’m well, too. At ten weeks postpartum, I feel better than I have since before I got pregnant. 

If only I could tell my pregnant self that this would be so — that this day would, in fact come, that the silver lining, the light at the end of the tunnel, that everyone told me to focus on, would exist for us. As I begin to make sense of my pregnancy and my experience with HG, I can now see so much that would have been helpful to know and understand then. In honor of HG Awareness Day — and in hopes of easing your journey if you or a loved one is experiencing HG — here’s my take.

This isn’t normal.

I waited too long to seek help from my doctor because I thought my nausea and vomiting were normal. I told myself: “Most pregnant women experience this, especially this early.” “It will get better.” “I just have to make it through — this is part of the deal.” Maybe. But maybe not. After several days of being unable to keep food down and feeling increasingly weak, things came to a head on a Sunday morning when I was 11 weeks pregnant. I threw up everything I put in my body, including water. Stomach acid came up, burning my throat. The pressure in my face was so intense I felt like my eyes would burst. I couldn’t fathom moving between my bed and the toilet. I surrendered. There was no question that something was off, that I needed help. 

Two days later, replenished with hydration and nutrients via IV and nasogastric tube, I had a diagnosis in hand. In retrospect, I wish I had set a lower threshold for what I was willing to endure before seeking help, before even asking someone, “Is it supposed to be this hard?” I later learned that this delay, this minimizing of symptoms, is quite common among women with their first pregnancy, especially if there is no known family history of HG. 

Help helps.

From then on, I was blessed to experience quality care. My doctor was well-informed about HG and how to treat its physical and emotional effects — never questioning the veracity of my pain, always open to trying new treatments to manage my evolving symptoms. (Many women aren’t so fortunate because HG is underdiagnosed; you may need to be prepared to advocate for yourself. If that’s the case for you, the HER Foundation has some great resources to help.) My hospital connected me with a local circle of HG survivors, women who comforted me in ways that people who haven’t experienced HG never could. And fellow members of the #hgsisterhood online showed me the way — and the light — by vulnerably sharing their stories and coping strategies. Friends near and far showed love and patience as I disappeared into a black hole for months. The ones who could showed up at our door, sat by my bed, and held my hand while making jokes about whether ginger ale might help. Our parents and my sister flew in to help and kept expectations for my engagement with them low, which was just what I needed.

I was lucky these supports were within reach, and I’m proud of myself for grasping them and seeking more. A younger version of myself wouldn’t have been able to do that, but this help made all the difference for my experience and recovery. If you aren’t in a place to accept or seek help, I encourage you to let this be the moment when you give  vulnerability a shot. As a dear friend texted me shortly after my diagnosis, “This is a crisis and you need to do whatever you can to get through this.”

Your person needs help, too.

It took me months to get well enough, to wake up to my life enough, to recognize that my husband was living through hell and needed help too. Watching your person experience what I described above (and worse) is terrifying. Wondering about how this will impact her and your baby is terrifying. Learning how to support her, physically and emotionally, is hard on the heart, head, and body. Doing all that while working and taking on all of the additional labor at home is exhausting. 

Our people showed up and it made all the difference for both of us. Every meal they brought, load of laundry they ran, and dish they cleaned took weight off his shoulders. When our loved ones took time to learn about HG and our reality — often by following instagram hashtags like #hgsisterhood — their emotional support for me took weight off his shoulders. The compassion, understanding, and reinforcing messages that my team at work sent daily to encourage me to prioritize my health took weight off his shoulders. My own increasing ability to take care of myself took weight off his shoulders. 

On the days when I wanted to reject help, remembering that he needed help too nudged me to accept it and we were better for it. In the moments when I resented him for exercising or playing video games with friends while I wallowed in bed, remembering that he needed a release too helped me slow my roll and we were better for it. 

The power of white lies and radical truth telling.

Quality medical care, therapy, support from loved ones, and a flexible job got me far, and a few coping strategies helped cover the rest of the distance. When people asked how I was, encouraged me to try ginger ale and crackers, commented on how fortunate I was to be so slim, wondered aloud why I hadn’t shared any “cute bump pics,” told me they were surprised I wasn’t an active preggo lady they way they imagined I would be, or speculated about whether I’d have a second child soon, I learned to respond in one of two ways depending on my energy level and mood. 

Either I’d grit my teeth, force a smile, and white lie my way through, or I’d share my truth (sometimes patiently,  other times sharply). How am I doing? “I’m ok, thanks, but gosh this pregnancy thing is tough.” Or, “Well, I just finished vomiting my guts out and need to be at the doctor in an hour for my next IV, so honestly, not great.” Am I going to have a second kid soon? “Oh boy, we’ll cross that bridge when we get to it.” Or, “This pregnancy has been so hard that there are days when I think I may actually die, so mostly I’m just hoping that this baby and I both make it. Thanks for your interest in our family planning.” 

Both approaches have their place, and having the power to choose how honestly to respond was a bright spot in an otherwise dark time when I felt like I didn’t have control over anything. (As an aside, WTF are people thinking when they say these things?)

Get inspired by the past, visualize the future.

To take my mind off the pain and fear of the present moment, I spent a lot of time looking back and looking ahead. Being so physically debilitated cracked me wide open and I found that my thoughts began to drift to some of my most challenging experiences, ones that, though I’ve made peace with, I usually keep tucked away. They resurfaced and reminded me that I am resilient, that I can persist, that I can heal from hardship. I’ve done that before and I can do it again. This gave me hope. So did imagining the future, dreaming of a day when my health would return, when I could shower or walk to the park independently without feeling terrified of collapsing, enjoy a meal, snuggle my son. Hope grew. 

Today, I can do those things, and perhaps because the experience of not being able to is still so fresh, each day sparkles with simple yet profound joys, even as we manage the new and very real challenges of parenting a newborn during a pandemic. I made it. We made it. And now I have another experience that will show future-me how much I can bear but also how much “help helps.” 

If you’re reading this in the bright light of morning, wondering if you will develop HG like your mama before you, or if you’re reading this in the foggy hours after dinner, praying that you keep those calories down and make it to bedtime when sleep will provide some sweet relief — know that it’s horrible until, one day, it isn’t, and that in the meantime, so many of us are here to share your burden, to take some weight off. And when it’s over, because it will be over,  I hope you’ll look back on this time and feel proud of what and how you endured. Welcome to a sisterhood I wish you didn’t have to be a part of, but is here for you nonetheless.