I don’t think doctors wake up in the morning, stir sugar into their coffee, and think, Today is a good day to make a patient feel powerless.
I’m often asked by fellow patients: Why do doctors gaslight us? You might expect me to say that doctors are just innately bad people. That I think they took their oaths with their fingers crossed behind their back. That they huddle together under the full moon coming up with new and nefarious methods of victimizing their patients. It’s easy to lay the blame for medical gaslighting entirely on a doctor’s bad attitude and intentions. But the reasons why it happens are varied and nuanced, and more often than not lack the maliciousness you might expect.
In the quest for compassion, care, an accurate diagnosis, and timely treatment, doctors have to fight a variety of factors that lead them to consciously and unconsciously gaslight their patients—and particularly their female patients. These include historical misinformation, the gender knowledge gap, the current limits on our understanding of the human body, an overburdened medical system that encourages the bare minimum, implicit bias, and the power imbalance.
Misinterpretations of women’s health go way back. Like, way, way back. In fact, for centuries, we’ve been trying to work our way out from under the rubble of rumors and best guesses from everyone from great philosophers to religious zealots to politicians with big agendas.
It started with the Greek physician Hippocrates. You know him—he’s the “do no harm” dude. He invented the theory of the wandering womb. As in, everything that has ever ailed a woman could be tracked back to her reproductive organs. Not only that, but he preached that a woman’s womb was like a listless ghost and a rabid animal mashed together: It was constantly in hunt of a child, and without one, it might literally migrate with rage and strangle her into convulsions. (Today that is known as a seizure—but thanks for the input, Hippocrates.)
While some of us might very much like a womb that’s able to migrate—ideally outside the body, so that one could, perhaps, use it to strangle others—any woman can tell you that it is, regretfully, not quite so powerful. Can it bring us to our knees with cramps? Absolutely. Can it generously Airbnb a human being for nine months? It sure can. But the idea that it could be a weapon—one that turns on us, as Hippocrates states, or can be turned on others, as religious leaders would later state—is simply a bizarre theory that just doesn’t hold up to modern science.
The theories that have shaped what we understand today about women’s health have really been a lot of just that: theories. Unproven, under-researched, and based on centuries of best guesses that inform the way we’re judged when we dare to be anything less than perfectly well and physically content.
History has told us again and again that something had to be at fault for women being, as was widely believed, the weaker sex. Women bleed. They suffer during childbirth. It must be something foul. A demonic entity. A godly punishment. A symptom of impurity. A result of promiscuity, curiosity, or ambition.
If we could not blame women’s wombs, we blamed their sins. And if we could not blame their sins, we blamed their wayward aspirations, and as women succeeded in showing their strength and science replaced myth and lore, there was only one card left to pull from the deck: women’s overactive brains. And explaining away their symptoms not as a punishment of God, but as the consequence of their own biology? It was the perfect segue into a new era of medicine.
I think the women of the past must have known something was wrong with the explanations they were given for their pain and suffering—just as we do today. And I bet they were just as furious as we are. Why didn’t we know more? Why weren’t we asking more questions? Why weren’t we investing more effort into women’s health instead of looking away in ambivalence or disgust?
What I have to assume they didn’t know was just how long the gaslighting would last. They couldn’t have known that it would trickle down from their broken bodies being blamed on Eve’s apple or Pandora’s box to being blamed on the natural fragility of women’s thoughts, their moods, and their need for attention.
I wonder, if they’d known, how hard would they have punched Hippocrates in his face—if not for themselves, then for the sake of their great granddaughters?
Are you a twenty-five- to thirty-year-old white man who is five feet six and weighs in at 154 pounds? If so, the medical world was built with you in mind. If not, you’re just too complicated, too expensive, and too time-consuming to be included in research. At least, that’s what the medical field has concluded over the last several decades. The human described above is also known as “The Reference Man”1 and he came into being in 1975, when he was introduced by the International Commission on Radiological Protection to determine safe dosages of radiation. And this man? He had legs. Because he managed to make it into textbooks and lab rooms, conferences, and boardrooms—and of course, medical schools.
This perfectly average, “ideal” human has since shaped the standard for the studies that were given the stamp of approval for use on all humans: male, female, intersex, able-bodied, disabled, underweight, overweight, and of various ethnicities and ages. As you might guess, this radical lack of inclusion in medical research brought with it a fair amount of disaster.
Have you ever heard of thalidomide? It was marketed as a perfectly safe drug for both men and women in the 1950s and ’60s but was never tested on pregnant women, resulting in the deaths of 2,000 children and birth defects in 10,000 more. It was a harsh wakeup call for the public about just how much variety among test subjects there really wasn’t.
But instead of insisting on trials for safety and efficacy in pregnant women, the opposite happened. In 1977, the FDA recommended against testing drugs on pregnant women during phase I or phase II trials, out of an abundance of caution and in the hopes of avoiding more tragic birth defects. They were so cautious, in fact, that they recommended excluding not only pregnant women, but women of any childbearing potential. Women were forced to sit by as medical research and new drugs (including those during the thick of the HIV/AIDS epidemic) were produced solely using data from boys and men.
We crept forward through the 1970s and ’80s, slowly doling out scraps of inclusion for women and minority groups in medical research—including a 1986 National Institutes of Health (NIH) policy that gently encouraged women to be considered in research. A memorandum published by the NIH in 1989 also requested that research solicitations include a rationale if women were not included in research.
Wow, thanks, guys. We’re humbled.
It wasn’t until the 1990s that women in STEM started to undo years of neglect from the medical research community. The NIH appointed Dr. Bernadine Healy as their first female director. She launched the Women’s Health Initiative, which, for fifteen years, led clinical trials to better understand the impacts of postmenopausal hormone therapies, diet, and supplements on bone fractures, heart health, and breast and colorectal cancers. The NIH’s suggestion to include women and minorities in medical research finally became more than just pointed encouragement and was written into actual law in the NIH Revitalization Act of 1993.2
Though the act was rightfully celebrated, it was clear that the damage had already been done.
The bottom line is that the lack of women included in medical research has resulted in our knowing less about female biology and less about how to diagnose, prevent, and treat diseases safely and effectively, according to Janine A. Clayton, MD, Associate Director for Research on Women’s Health at the NIH. “In order to have more women’s health research done,” she says, “you need more women’s health researchers.”
Clayton leads the Office of Research on Women’s Health (ORWH), which serves as the focal point for the NIH’s research on the health of women, working closely with all twenty-seven NIH institutes and centers to advance and expand women’s health research. The ORWH leads and supports a wide array of programs, activities, and policies designed to improve the health of women at all stages of life, as well as to support women in biomedical fields at all stages of their careers.
“Over the last thirteen years, we’ve created and supported and funded over seven hundred BIRCWH scholars across the country,” Clayton says. BIRCWH (pronounced “birch”) stands for Building Interdisciplinary Research Careers in Women’s Health and is a mentored career development program. “We also launched, in 2000, the Specialized Centers of Research Excellence (SCORE) on Sex Differences program.”
In 2017, the efforts of Clayton, the ORWH, and former NIH Director Dr. Francis Collins also helped establish the NIH Sex as a Biological Variable (SABV) policy, which states the expectation of NIH that sex as a biological variable will be factored into research designs, analyses, and reporting in NIH-supported vertebrate animal and human studies. This policy helps address gaps in research created by the historical reliance on exclusively male cell and animal models, and majority-male research populations.
While these are encouraging steps, Clayton says, “We know that the knowledge gap is going to take time to address. We have a knowledge deficit around women and their health because of this history. Forty years ago, there wasn’t the understanding that diseases show up differently in men and in women. It wasn’t known how important it is to test treatments in men and women and to look at the results separately.”
So, to recap: Up until 2017, those in possession of a womb (now or previously) have been critically excluded from the kind of research that might give care providers the backing to say, with any degree of accuracy, “Relax, it’s fine.”
While we wait for the world to catch up with the many extra years of understanding we have developed on men’s minds and bodies, it’s safe to say: Gaslighting women out of the concerns they have over their bodies? The medical profession doesn’t have a leg to stand on.
You can only work with what you’ve got. Personally, I don’t have a fully functioning immune system, and that wasn’t easy to figure out. So, for the first nineteen years of my life, I got gaslit, undermined, told I was faking illness for attention, told I was too thin, too fat, too lazy, too active, and frankly just too complicated to be diagnosed. The reality was that I had a rare disease that few pediatricians were trained to recognize, let alone treat.
In the early years of my career in advocacy, I worked for an organization called Global Genes, a rare and genetic disease nonprofit that sought to educate and empower patients and caregivers. This massive organization was on the forefront of rare and genetic disease understanding. They worked internationally to eliminate the challenges patients face when they receive a diagnosis that few have ever heard of and even fewer will ever see a treatment for. That first year of intaking patient stories rubbed my soul raw. It yanked me from any great distance I had ever felt between myself and unthinkable realities. It humanized the face of chronic illness and genetic variations that are so devastating to the healthy that they cannot contend with their very existence—let alone find themselves in long, relentlessly honest conversations about them.
It also helped me recognize a pattern. Though these diseases had been defined, had supporting foundations, were written about in textbooks and discussed in journal articles, they were still mysterious and often so unusual that even when doctors did suspect them, they quickly quashed their own hypothesis. They’d never seen a case, so how could they appropriately diagnose it? Almost all of the thousands of patients I worked with had dealt with the same long road to a diagnosis: years of fruitless appointments, unexplained disease processes, and even involvement from child protective services, who suspected poor parenting.
Doctors had limited time and empty toolboxes. Instead of ordering genetic testing (many doctors had no idea where to send such a script) or sending patients to a specialist (who they had never had to consult with before, leaving them unsure how to proceed), they would send patients and their parents in circles, testing for the same generic childhood illnesses and refusing to dive deeper—because they didn’t know the way down or out.
With over 10,000 distinct types of rare and genetic diseases, and more being discovered every year, that’s a lot of doctors saying, Your test results are all normal. Because if they couldn’t find what was wrong, it must not exist. And if it didn’t exist, then those patients were imagining it, embellishing, overthinking. Behind every one of those now-named 10,000 diseases was a patient zero (and thousands more patients after them) whose doctors called them crazy.
At Global Genes, with the help of dozens of other similar organizations, we had found various conditions that were matched to a genetic cause and had grouped other syndromes into other disease pools. But there was still so much we didn’t know.
We have split apart the human body, we have explored the human genome, we’ve studied and tested and explored ourselves inside and out—but we don’t have all the answers. We only know what we know. Some doctors meet the unknown with enthusiasm. They want to test, to research, to capture history and fix the future. Others simply do not know what else to do with not knowing but to turn away, placing the blame on the patient who is still waiting to be seen and heard.
Even in a pre-Covid world, American doctors were struggling.
They struggled to maintain work-life balance through grueling years of medical school and residency. They were hazed and tried by their professors and asked to consume and memorize thousands of conditions and their warning signs. They were then chucked into hospitals and practices where they were expected to see dozens of patients who they would need to counsel, prescribe, and take copious notes and history on, while being expected to forever continue their education, continually be reading and learning.
I doubt any doctor in any hospital in the United States would say they have the luxury of time. I doubt any would say they’re overly satisfied with the amount of time they are allotted to spend with each patient. They would probably tell you that they spend more time than they have calling in replacements for medications insurance won’t cover. That their inboxes are overflowing with rejections for outpatient tests. That they cannot possibly handle everything they’re tasked with: detailed monitoring of the status of their patients in the hospital, extra research to manage conditions they haven’t previously seen in their practice, investigation of the latest medications, procedures, and diagnostics.
It’s easy to assume that doctors who are too busy to treat their patients with patience and compassion don’t care. But most of them do. The problem is, good intentions may not be enough to break through the barriers in their way. They may want to give your situation the attention it needs, but can’t. They may feel compassion for your suffering, but not have the ability to rush you through triage in an ER. They may be physically pulled out of the exam room to treat more clinically dire patients when you’re trying to explain your issues. Patients are sick and dying, and sometimes doctors can’t figure out what’s wrong or how to fix it. They are cogs in a larger system that is designed not to understand you or fix you, but to patch you up, spit you out, and make a profit.
Healthcare will always be messy. Insurance issues. No empty beds. Overscheduled appointments. Unavailable technology. A lack of necessary staff. Being a doctor is hard. It’s so hard; it’s the hardest. It’s almost as hard as walking through life with a fibroid so big and painful it looks like you’re eight months pregnant with agony. It’s almost as hard as trying to get through another day with no food in your stomach because your doctors keep ignoring your requests for a colonoscopy and all you can stomach is a saltine cracker. It’s almost as hard as being told you should have come in sooner, been smarter, or tried harder when you have focused your energy on nothing else for a disastrously long time.
Patients and doctors stand beside each other in the overburdened American healthcare system. We don’t get to choose the circumstances of that existence beside each other, but what we can choose is how we treat each other.
In this book I would never advise you to abuse a healthcare worker, to scream at them or belittle them. I don’t suggest that you fail to pay them for their time. No matter how hard the situation gets, no matter how overburdened the system gets, failing to treat others with respect and failing to do your part as a patient participating in your own care is unwise.
So how can we allow the doctors in an overburdened system to tell us our pain isn’t real, doesn’t matter, or does not warrant diagnostics or treatment when it impacts our lives so greatly? We can’t.
The reality remains: Doctors are burning out. Some of them don’t have anything left to give and so they do the only thing left: They take. They reinvent reality to fit their workload, to achieve what little they can in a short appointment. But if that means gaslighting women into feeling as though their pain and symptoms are frivolous or imagined, it helps no one.
You would hope that in every life-or-death interaction you have as a patient, you’d have the tools you’d need to circumvent the death part. But there will be times when, even before your mouth opens, before your symptoms are reviewed, before the freezing-cold metal of a stethoscope ever meets your skin—you have already lost the battle. And that hinges on the quiet but always present concept of implicit bias.
Implicit bias occurs when a healthcare provider stereotypes patients, developing an opinion about a specific patient based on similar patients they’ve observed in their career, been instructed about in their training, or learned about from the media. These biases could be about a patient’s gender, ethnicity, age, weight, sexual activity, sexual orientation, mental health diagnoses, or other facets of their appearance. Even more disheartening is that implicit bias doesn’t stop with demographics. It can also come into play as you describe your pain and symptoms, if it happens to remind your doctor of patients they’ve seen before—the drug-seeking patient who also described their pain as relentless and intractable, the patient who didn’t want to work who also said they were injured by a fall down the stairs.
All of us use implicit bias in our lives. It’s what lets us make fast and (often) effective decisions, whether on dating sites or job interviews. But in medicine, it can leave patients dangerously typecast. It can mean a Black patient doesn’t get the epidural she needs in time, or a young woman isn’t given the mammogram she needs when she finds a lump in her breast, or a patient in a larger body isn’t offered the same diagnostics a thinner counterpart would.
Medical gaslighting has a symbiotic relationship with implicit bias. When doctors fail to see a patient as an individual, it’s easy to dismiss their complaints. They’re backed by the confidence that they know it all, because they’ve seen it all, and your test results, your self-reported pain, and your medical history are no different.
If you’ve ever had your legs spread open while a doctor pokes around your insides, it might have occurred to you that, as a patient, you can be a little vulnerable. Whenever we find ourselves unwell, we have to cede control of our bodies, surrendering to the idea that we don’t have the knowledge or the authority to fix the problem on our own. We have to put our lives up as an offering for the chance of expert care.
We have to wear paper gowns. We have to wait quietly in exam rooms for however long it takes to be seen. We have to defer to our physicians in exchange for treatment, comfort, and permission to be well.
The power imbalance between patient and healthcare provider is a significant one. You are asking for help, and in doing so, you must accept that this doctor is either going to do their best to help you, do the bare minimum, or maybe cause you more harm.
You’ve probably found that your doctors aren’t always receptive to your input. They may not share your concerns, recognize the severity of your pain, or consider your suggestions about treatment plans. As women, this type of brush-off is something we’re familiar with in lots of areas of life. We are in a constant scuffle with gender power dynamics that separate us from the ability to speak freely, argue confidently, and demand, not beg for or demurely suggest, the things we desperately need. And when the doctor is male and the patient is female, the power imbalance can be even more catastrophic.
But hey, you can always walk out and get a second opinion, right? Big sea. Lots of fish. Sure—unless your choice of physician is limited by having poor insurance coverage, living in a rural area, being limited to only a few specialists who treat your unique condition, or are experiencing an emergency. When that happens, you’re at the mercy of whoever walks through those exam room doors. And in cases like these, the power imbalance can prove life-threatening.
A doctor can send you out the door without a diagnosis or treatment. They can belittle your fears and overstep your comfort level. They can laugh at your trauma and decide on your behalf how to deal with your disease without your consent. They can ban you from emergency rooms, fire you from their practice, badmouth you in your medical records, and make your journey for care a longer and harder one than it already is.
This power imbalance is also why we can’t always react the way we want to in the face of medical gaslighting. We can’t always lash out. Anger makes us look less credible—and what good is rage with no strength behind it? We can’t always give in to our urge to cry or speak freely about our frustrations. Showing that kind of vulnerability encourages those with more power than us to take even more control of our decisions.
Recognizing this imbalance, and tired or afraid of the gaslighting that comes with their doctor being in charge and believing they know better than you, a lot of women turn instead to holistic health practices, mindfulness, and expensive and ineffective wellness products that promise a better experience—one where you, the patient, are finally in control! But wellness works well only for those who are already well. You are always one twisted ankle, one allergic reaction, or one annual screening away from needing traditional medical care—and finding yourself back at the mercy of the same system, and the same power dynamics, you were trying so hard to escape.
There are so many reasons doctors gaslight patients. It’s enough to make you want to run to the nearest health guru, guzzle celery juice, and try bedazzling your spleen. But you can’t run from your body, or the ways in which your courage will be tested when it comes to standing up for it. So, you need to be smart about how you combat medical gaslighting—and that starts with recognizing medical gaslighting as soon as it happens.