May 15, 2020

“Just drink some ginger ale!”
“Sea bands will fix you right up!”
“Just keep some saltines by your bed.”

If you have hyperemesis, you probably heard these so often it made you want to scream. While these remedies might work for your garden variety morning sickness, they are completely useless against the monster that is hyperemesis. Since today is Hyperemesis Gravidarium Awareness Day, I thought I would draw back the curtain a bit on what life is like when you have it. Because I’ve not experienced it myself, I’ll be sharing the thoughts and experiences of those who have been there.

Definition

Strictly speaking, the term Hyperemesis Gravidarium is excessive (hyper-) vomiting (-emesis) in pregnancy (gravidarium), but the medial condition with that name is more broad than that. Any nausea, with or without vomiting, that is severe enough to impact a person’s ability to get enough calories to sustain life is considered HG.

If someone around you is struggling to get enough calories, that’s “bad enough” for you to take it seriously. All the women I talked to about HG talked about how hard it was when people didn’t take it seriously or acted as though they were being overdramatic.

How people might be affected

Hyperemesis Gravidarium (HG) can look like a lot of different things. Brooke, a mom of four from Minnesota, described her HG as “Sometimes you get a milder case where it just looks like a complete inability to eat at all due to the extreme nausea and food aversions. It took me losing about 9% of my body weight and being totally unable to function in daily life for one of my friends who had had HG to suggest that maybe I had it. I had no idea. “

Sometimes it is just unmistakable. Lexia describes her hyperemesis from her three pregnancies as “Until 24 weeks I was bed-bound, peeing and puking into a bucket because I couldn’t stand up to get to the bathroom.” Needing IVs, home health care, and serious medications for nausea is common.

Laura, a mom of two from Southern California, also had ptyalism, which is excessive salivation. “It was SO embarrassing. I had to spit all the time, or it would make me throw up. I had that until about a month after birth.”

Tips for getting calories

Jennifer from Louisiana summed it up well ” Eat WHATEVER WHENEVER because you have no idea if it’ll sound good again.”

Brooke managed by “coming up with one food I could picture actually eating and then basically slowly eating one bowl of food throughout the entire day. Then I started adding more high calorie things that I could picture actually consuming. Ice cream helped a lot for me because for whatever reason the coldness and texture didn’t repulse me. And it was highly caloric.”

Lexia suggests finding anything at all that is a safe food, even if only temporary. “You get a free pass to ANYTHING you can keep down. Literally, anything. One week a ‘safe’ food might be oranges, the next week you may not be able to stomach even looking at one. One pregnancy, for a few weeks, my safe food was Arby’s roast beef sandwich and a Dr Pepper. no lie. I have NO IDEA why I could sometimes sort of eat that. Since it was my third pregnancy and I’d already done this before knowing babies come out fine whether you eat all organic non GMO food or freaking Arbys, I felt ZERO guilt. As a matter of fact, I felt SO MUCH PRIDE that I had found a high calorie ‘safe’ food that I could consume. You don’t get a choice in what your safe food is for that period of time. You just eat it (if you can).”

Tips for the logistics of life

Jennifer suggests that you “Accept all help. Seal off a room to sounds and smells. My room was a sanctuary and where I spent most of my time.” She also spent a lot of time in her car with the air conditioner going when she couldn’t stand the smell of her house any more. Buying emesis bags in bulk was another of her practical tips.

For Lexia “Podcasts were a good coping mechanism for me to pass the time. Watching a screen made me sick, so I just listened to podcasts and audio books, closed my eyes and rocked back and forth on a couch. For weeks on end.”

Brooke’s mindset was “Change all your expectations. Literally expect nothing from yourself but trying to meet your goals for health. Mine was a minimum amount of calories. Your older kids can self manage a lot more than you expect. If you can, get help. I did a lot of just laying on the couch watching TV. Also try not to do too many things that expend more calories because they will just be more eating you have to do.”

Showering was a common challenge, and for many people, a day when they showered was no good for anything else because of the excessive energy it took to shower, even sitting down.

Since medication, small amounts of food and difficulty staying hydrated contributed to constipation for most of the people I talked to, most recommended magnesium absorbed through the skin, from creams, sprays or epsom salt baths if they could manage it.

Multiple women mentioned that they would sit on the toilet and puke into a bucket, or sit on towels on the floor, or wear adult diapers to deal with involuntarily peeing or pooping from the force of the vomiting. Over time, from repeated episodes and malnourishment from the disease, pelvic floor weakness is very common but rarely discussed.

Tips for mental and emotional coping

The struggles of dealing with HG are epic. Lexia said “There is literally nothing you can do, which is part of the mentally difficult part of it. You just have ZERO control, and the more control you try to have, the worse its going to be for you.”

Laura commented “The most difficult part for me was just the utter lack of help or resources. When you’re in the middle of it, if even looking at the TV, computer or your phone makes you sick, you’re completely isolated. And if your doctor doesn’t check in with you often or give you resources, you’re SOL.”

Lexia talked about her mental and emotional experience in very stark terms:
“Just think about one minute to the next. Sometimes just thinking and dreaming about abortion and talking through it would help- it was helpful to know that it was there as an option even though I know I wouldn’t go through with it. Had it not been an option I would have considered suicide.”

Amber Mossman, a mom of two from Tuscon, had to make some hard calls during her pregnancy: “it was also helpful for me to temporarily cut out relationships that were not actually helpful. It was such a fragile time for me that I needed to take a break from people who hinted that I was being dramatic or lazy, or who were telling me to try ginger and I would feel better–I really didn’t have the capacity or energy to respond to well-meaning but thoughtless “help” like I could during normal life.”

It’s not just the pregnant person who struggles emotionally. Amber’s husband also felt the HG took a toll on him. He described feeling powerless to help, and the financial burdens that came from suddenly and unexpectedly being the sole provider at a time they had anticipated saving up. He recommends “Make sure you have someone to help you and your needs, too. If you have family near, eat with them and try to visit them so you can be more energized when you go back home to take care of her for so much time.”

Several people mentioned just taking it minute by minute, and that joining a support group was critical to their mental health. Most also mentioned letting go of any expectations or guilt in favor of simple survival. All mentioned accepting help and using medications.

Tips for partners, family and friends

Don’t wait to be asked. Step up and help. Jennifer shares how hard it was to feel alone and unhelped in her fourth pregnancy: “When I did (share my condition) with those who I thought were close and they weren’t there, it was hard… They saw the IV’s, the pump… they knew (her husband) worked out of town… still people didn’t offer to help or just come sit.”

Clint Mossman, who experienced HG with his wife Amber, recommends that you “Move the bed as close as you can to the bathroom. Be sure to help with her self-care, like taking showers, cleaning up, making food (if she eats), washing clothes, getting dressed, stuff like that.” He also recommends that you accept and go with changes to the whole family’s diet and invest in things that can help keep her busy and distracted during the worst times.

Another theme was that many of them did not talk about the depth of their struggles with others, and felt difficulty in asking for help. Brooke shared a story of a particularly difficult moment when she was alone caring for older kids and a noxious crisis happened. She was struggling to not throw up cleaning it up alone, and she says “In my right mind now I realize I should have just called a friend to help. But it just felt like something I couldn’t ask for help for.”

Tips for Recovery After Birth

Brooke advises “People with HG should expect to spend their first year post baby rebuilding their bodies. I was so exhausted for the first month because I just had no reserves to pull from in those early days of nursing and what not. It did not go away immediately for me after birth. It was at least 50% better right away. But it took about 3 months for it to leave to the point that I was not nauseous at some point most days of the week.”

It’s not uncommon for people who endure hyperemesis to have long lasting implications from it. Trauma, flashbacks and even PTSD are common, and even talking about their pregnancies was difficult for some of the women I interviewed. Dental problems from stomach acids hitting the teeth frequently can also happen, and was mentioned as a significant expense and stressor after the baby was born.

Many people who go through HG never want to have another baby again. Others take a while, and eventually get to a point where they are willing to go through it again for another child. Both are normal and totally okay.

In conclusion

Hyperemesis is so much worse than morning sickness. Lora, a midwife from the east coast who has experience helping women through it, described it as “So much depletion and trauma and fighting for survival at what’s supposed to be a joyous and seemingly lovely time for everyone else.” The massive divide between the idealization of pregnancy and the trauma of HG is heartbreaking. Please, if you or someone you know is experiencing HG, believe them. Be proactive to step up and help them. Choose to respond with compassion and caring instead of minimizing and dismissal. And know that it does not end when the baby is born.”

Resources

HelpHer – The Hyperemesis Education and Research Foundation has information for people going through it, their friends and family, and the public. Their Q&A forums can be good for connection, and they recently released an app.