As a person with chronic illnesses and several disabilities, I am accustomed to doctors dismissing or downplaying my symptoms on a regular basis. Sexism and discrimination against women in the medical industry is an anecdotally well documented experience; personally, it took me eight years of suffering and dismissal by doctors to receive my autoimmune diagnosis.
But when I developed a high-risk pregnancy disability, hyperemesis gravidarum (HG) in my pregnancy, I was convinced this time it would be different and that since there was a baby involved, medical professionals would at last take my concerns seriously. I thought they would care about keeping the baby healthy, even if they didn’t care as much about just me before.
I was wrong.
In week 4 of my pregnancy I developed HG, a pregnancy disability thought to affect 0.5-3% of pregnant women.
Thanks to Kate Middleton’s high profile pregnancies, HG has risen higher in social awareness, which is extremely fortunate because it is estimated that thousands of women in the United States (up to 15% of HG pregnancies) terminate their pregnancy every year because of insufficient diagnoses and treatments.
HG is morning sickness on steroids.
I experienced nausea and vomiting so bad that there were days I couldn’t keep down anything except fruit popsicles. I was wildly fatigued, where just going to the kitchen could make me out of breath. Any smell of food in the house would cause a vomiting episode. I lost 7% of my pre-pregnancy weight, could barely keep down vitamins and was constantly fretting about the babies. When you get pregnant, everyone emphasizes the importance of a healthy balanced diet. How would my unborn child fare on the BRAT diet alone?
By the time my wife and I found out I was pregnant with twins — a risk factor for HG — my symptoms were steadily worsening, despite over-the-counter medications for nausea and every tip and trick we could find.
Over Christmas I was vomiting so much I couldn’t even keep down ice chips or water, and we spent the day after Christmas in the ER.
I had been doing a lot of research into normal morning sickness, knew I was far past the normal range and had done research into hyperemesis gravidarum — a pregnancy disability that seemed to meet my symptoms. I asked for both urine and blood panels to be run so they could check for the signs of hyperemesis — electrolyte imbalance and proteins in my urine being one of the markers. I was stunned when the doctor attending me came in and breezily announced, “Your labs all came back looking great, so all we have to do is get you feeling better!”
Oh, I thought, well that means it’s not HG then. I guess all my electrolytes are looking good (she said “great”), so it’s just that I got dehydrated on the last day…?
The doctor’s plan was to do IV fluids with Zofran and Benadryl for nausea and send me on my way. But now that I was here, I wanted to make sure the babies were okay, via a test or ultrasound.
I requested to get a vitamin panel run to check on my vitamin levels, and told the doctor that with celiac disease, I’m high risk for poor absorption levels even normally, and I haven’t been eating well or much at all for a month–and appropriate nutrition is never more important than the first trimester.
When the doctor denied my request, I asked for it to be noted in my chart that I had requested a full vitamin panel and been denied (“I want it noted in my chart” is a recommended tactic to encourage accountability in medical professionals), and she assured me she had noted it.
When I asked for an ultrasound to check on the babies — until this point I hadn’t had a medical ultrasound, just one at a boutique run by a non-medical professional which is where I found out I was having twins — the doctor informed me that there was no point in doing the ultrasound because I wouldn’t “even be able to see anything” as the baby was far too small to see.
This is when I realized that the doctor was deliberately withholding information from me at best, or flat-out lying to me at worst.
There might be many reasons why the ER would choose to not do an ultrasound, but “you can’t see anything at 8 weeks” isn’t one of them: you can see, clearly, that there’s a baby at eight weeks — I had just seen two of them last week. When I asked again, advocating that I had an ultrasound last week by a non-medical professional and we had seen twins, the doctor said condescendingly, “I’m sure you thought you saw something,” and just left the room.
When the tech came in to discharge me, she gave me discharge paperwork that had the term, “About hyperemesis gravidarum,” written across the top.
“What is this?” I asked, pointing.
“That’s your diagnosis,” said the tech.
“No, the doctor said that all my labs were ‘great’–and hyperemesis gravidarum means my electrolytes are not great and that there are proteins in my urine,” I said.
The tech, notably confused, said, “Well…I don’t know what the doctor said to you, but they did find proteins in your urine.”
At that point, realizing that even more information had been withheld from me, I said, “I would like a complete printout of all my lab results before I leave.”
When I got my lab results, they showed abnormally high protein levels in my urine: a sign my body had become so malnourished, it had entered ketosis in order to keep my babies alive — a clear symptom of HG.
Also, my electrolyte levels were not “fine”— everything they tested for was low or imbalanced, another clear marker of HG. And, the doctor had not noted in my chart that I had asked for a vitamin panel; there was no mention of my requests anywhere.
I was horrified at having been treated thus by the doctor. Had I walked out of there believing what she had told me, that everything was “great” and it was just a temporary dehydration of the last 24 hours, I would have undoubtedly ended up back in the ER within the week with how quickly my nausea and vomiting was worsening.
But because I demanded on getting my labs, I was able to share those with my OB-GYN, who promptly ordered me scripts to continue on Zofran (a nausea medication that substantially reduced my symptoms and enabled me to keep down food consistently for the first time in weeks) and get regular IV infusions at the hospital for over a month, which helped me recover enough to get back on my feet and manage at home.
It’s depressing and even devastating to think that medical professionals would withhold information from us or even lie to us in times when we are vulnerable, and who knows why the doctor did that? Perhaps it was a busy day and she just wanted to check us out and clear another bed in the ER; I definitely felt my intelligence was dismissed by her when she tried to convince me an 8-plus week ultrasound “wouldn’t show anything”.
I talked to M. (a local nurse who asked to be identified by her first initial for this article) about this ER experience and asked her what might have been the motivation behind a doctor withholding information or even lying about it.
M. is a local nurse who has a background in biochemistry and a master’s in stem cell biology and nursing.
M. said, “If I were to blindly guess what happened, I would guess the doctor was busy and didn’t even look at your labs. They were probably looking at fifty other people’s charts and didn’t want to admit that they hadn’t looked at yours. Our healthcare system is broken: emergency departments deal with everything, and ER doctors are not qualified to deal with everything.”
M. added, “They’re used to looking at people with nails punched through their hands. Maybe they weren’t lying to hide your labs; maybe they were withholding because they hadn’t even looked at them and were thinking, ‘We need this bed, and if I tell you there’s a problem, you’ll want to stay longer, and we need this bed.’ But even if they’re super rushed, if you need questions answered, it’s their job to answer them.”
Another local mom, Lisa, also experienced the frustration of not being adequately diagnosed during her pregnancy when she, too, contracted HG.
She ended up in the hospital multiple times with serious dehydration, malnutrition, and ultimately a kidney infection while pregnant before her OB-GYN would consider HG as a diagnosis; previously, her OB-GYN was just dismissing her symptoms as “morning sickness”.
“It took so many hospital visits for the exact same thing before my doctor would consider it to be something that I would qualify for as a diagnosis,” Lisa said.
“Going to doctors as a woman has been very underwhelming,” Lisa says. “I have often not gone to the doctor for things I should because I’m not treated like what I’m saying is true, or given respect.”
When Lisa became pregnant a second time, she went to her doctor immediately because the likelihood of HG recurrence is so high, and she got started on preventative medication.
It was so much easier the second time around, she said, but she was still vomiting every day for nine months.
“It was really frustrating because if my doctors had been willing to workshop my medication more, I could have been healthy enough to not be vomiting every day, but they weren’t willing to do that. And I went to several different places so it wouldn’t be just one person judging how serious or not my condition was, and they still weren’t willing to workshop it.
At eight months pregnant, my doctor said, ‘You’re still puking? I don’t understand why.’
I said, ‘What do you mean, you don’t understand why? I have HG. That’s what HG means! I am barely making it right now.’ But my doctor made me feel like she believed I was making my symptoms worse than they are, or even making them up.”
Hearing Lisa’s story as well as having my own experience truly confirmed the importance of being able to advocate for myself to my doctors. If you also have experienced having your symptoms dismissed or downplayed, I definitely recommend these four things:
1.) Do your research. I had extensively researched likely causes of my illness and knew some of the labs the doctors should run, such as checking my electrolyte levels and looking for proteins in my urine. I had fortunately come across HG during my research as a likely diagnosis for my symptoms, but I’m the odd one out–many women still don’t know about HG. For example, Lisa did not know about HG before conceiving.
“With my first pregnancy, not knowing what HG was because many doctors don’t even know what it is, I didn’t have the strength or knowledge to tell them, ‘No. I’ve been in the hospital over and over for the same thing — you aren’t medicating me the right way and you aren’t taking me seriously,” Lisa said.
If Lisa had known about HG — through more societal awareness, medical awareness, or easier access to information about it — she would have been able to see if her symptoms lined up and advocated for herself with more knowledge rather than trusting her doctors as they just chalked it up to “horrible morning sickness.”
2.) Ask for your concerns or your dismissed requests to be noted in the charts, and then ask to see it.
This is the first time I’ve known a doctor to lie to me about having noted something in my charts, but it doesn’t mean it’s the first time it’s happened. Now I know that just asking for a notation isn’t enough; I need to see that it happened as well.
3.) Ask for your actual labs, not an interpretation of your labs. Yes, your doctor is far more medically educated than you, and in a perfect world, your doctor would be the one you can rely upon to interpret your labs accurately and compassionately.
But even in the best of times, your doctor doesn’t know your body and experiences like you do; and clearly, as in my situation, this information can be miscommunicated. Get your labs so you can do your own research and get a second opinion if necessary.
M. recommends, “Everyone needs to be their own mini physician. You really need to get your own data. So everyone can ask to print off their lab results before they leave, or ask to be shown that they’re in your medical chart. They may not be meaningful to a lot of people, but they can show you if something’s high or low, and how high or how low. If a range is 2-20 and you’re 21, that’s not a big deal; but if you’re at 80, you can say, ‘Hey that’s a pretty big number out of the range of normal.’ You might have to say to your doctor, ‘I really need this question answered, it’s important to me to understand what’s going on. Even if the answer is, ‘I don’t know,’ it’s important that I hear that answer.”’
4.) If standing up to doctors sounds difficult for you, practice beforehand — or bring an advocate with you!
Even as a medical practitioner herself, M. notes, “I’ve certainly asked my partner to come with me to appointments where I’ve needed support, to have another voice that wasn’t the patient’s voice.” She urges people to remember, “You’re the person that knows your body best, so don’t let anybody tell you otherwise. You’ve lived with your own body, and if you’ve paid attention to it, you can tell when things are hurting or wrong or different, and if you have a sense that something’s wrong and can describe it a little bit, that’s an important thing to bring into a conversation. There’s incredible value in that intuition that doesn’t have a lot of numbers associated with it but is really important to trust.”
Even if this can be hard because the doctor is far more educated medically, M. encourages, “They’re the expert in a certain way of understanding bodies, but you’re the expert in understanding your body. You’re not just going to someone with expertise, you’re also bringing expertise.”
Lisa wholeheartedly supports women practicing self-advocacy.
“I wish I’d known, before my diagnosis, that I could speak louder and prouder and advocate for myself more,” Lisa said.
It’s tragic that women experience their health issues being dismissed by medical professionals.
“HG is a woman’s pregnancy symptom,” Lisa said. “so it gets swept under the rug, and because women do get morning sickness doctors can just say ‘it’s extreme morning sickness’. But when women’s lives and the lives of their fetus are literally in danger and they’re not being taken seriously–the mistrust about doctors from women is just going to continue to grow.”
Although it’s wearying to constantly advocate for ourselves at doctor appointments, having clear and helpful guidelines that we bring with us to each doctor’s appointment can lift the burden somewhat and ensure that we (and our unborn babies) are receiving the care we need.