You could cope with being made to feel crazy. As a woman, you were born and bred and raised to get your feelings hurt. If that were all you needed to be defended from, you could turn up any power anthem, shake it off, move on. But that’s not all of what’s happening here. It’s just the tip of the iceberg.
Having your understanding of your body questioned or invalidated can make your confidence waver over time. You once felt sure that the discomfort you were feeling was more than just discomfort; it was pain. Now you ask: Am I overreacting?
You once had no second thoughts about making a doctor’s appointment for a stubborn infection. Now you ask: Should I really waste their time on this?
You once argued without hesitation over what felt like a wrong diagnosis. You’ve fought this battle so many times now that you ask: Am I just being prideful?
You wonder: Is my body truly worth defending at the cost of my emotional well-being?
Except the consequences of not recognizing, fighting, and working to systemically alter the practice of medical gaslighting are ones that could cost you far more than your mental health.
We’ve mentioned shame as both a tool of medical gaslighting, one that manipulates patients into accepting dangerously substandard care, and a consequence. But the impact of medical gaslighting is not just personal. It’s also systemic. When women’s health concerns are silenced in one room, it echoes worldwide.
There are five categories of consequences to medical gaslighting:
•Shame. Medical gaslighting leaves patients harboring poor self-esteem from the perception that they should be better able to cope with stress, disease symptoms, treatment side effects, and life in general.
•Deblayed diagnosis and disease progression. When a patient is gaslit, they often delay or refuse entirely to seek care from another provider. This can result in a condition worsening, as an infection or cancer can spread dangerously in the time it takes for a patient to finally agree to—or perhaps even be forced to—seek care.
•Generational misunderstanding of disease. When a patient is told their disease symptoms are part of the normal course of health (like growing pains that are actually a rheumatic disease, or body aches that are actually sickle cell complications), that dismissal of pain or symptoms is then often repeated by the patient to their children, resulting in generational misunderstanding of inherited disease.
•Diagnosis of exclusion and data pool pollution. When healthcare providers fail to provide patients with a thorough diagnostic evaluation, and instead compromise with a diagnosis of exclusion (a diagnosis arrived at by process of elimination, often with a broad and general definition that offers no treatment recourse), patients suffer from a lack of effective treatment and pollute that disease’s data pool with potentially inaccurate insights.
•Irreversible bodily harm and death. By means of delayed care, inaccurate diagnosis, failure to bridge trust with the medical system, or misunderstanding of a medical emergency based on false information given to them about their condition, patients can suffer irreversible bodily harm or death.
It’s easy for some people to trivialize medical gaslighting. But it’s consequences like these that show just how serious it is.
Of all the weapons one can wield in a war against women, shame is the sharpest. We all want to belong, to feel connected to each other, to feel “normal.” We are taught about how our bodies are supposed to work—what foods we’re supposed to be able to eat and what kind of exercises we’re supposed to be able to do. We’re taught that we, as people, are good or bad based on our ability to function the way other people do. And when we fail? When we can’t do the same things as those around us? When we develop diseases that are too complex for others to understand? We feel shame.
Shame pours over you, a film that you can’t peel off. It makes you want to hide in a corner, climb under the covers, apologize for existing. You’d do anything to avoid it.
Which makes it the perfect, easy solution to shut you down and get you out of the way.
Shame has been used for centuries as a response to the great mystery that is the female body and as a way to halt our curiosity to understand it. Shaming women about what their bodies look like, how they’ve fed and groomed them, and who they allow inside them are how we control women who might otherwise have the audacity to advocate for themselves.
Your weight, your hygiene, your sexual history, your response to pain—all are just stones used to sink you into the water and out of sight.
While you learned shame, others were learning the power of manipulation. They learned that for you to be manipulated, you had to be vulnerable. A power imbalance had to exist. You had to be desperate for aid.
If you understood how and why your body worked the way it did, if you had community to validate this understanding—you were less susceptible to influence and the subsequent shame. But what if you were a woman who was expected to have children (but could not get pregnant), or whose body was used for the pleasure of her partner (but suffered pelvic pain), or who had chores and responsibilities (which were dependent upon physical abilities you lacked)? You were a perfect target.
Most of those who exercised the power of manipulation probably weren’t fully aware what it was they were doing. They simply saw the benefits of doing it. Shame deterred. Shame silenced.
Can you think of a system that really needs to stem the flow of people walking through its doors? A system that is overburdened, understaffed, lacking the resources needed to respond to demand?
You were perfectly made to absorb shame and leave your doctor’s office humiliated, untreated, and—most importantly—hesitant to return or to seek care elsewhere.
On behalf of the overburdened American healthcare system, thank you for your shame.
I’ve tried many ways of shaking off the shame after a humiliating doctor’s appointment: Stress-eating. Running through the details of the appointment in my head. Isolating, in an effort to avoid acknowledging the unreliable version of me that exists in that doctor’s mind.
It can be so exhausting to be perceived. Some of the worst encounters I’ve had medically haven’t been physically damaging. They’ve been blithe comments and faulty observations that have forced me to see myself through the misguided eyes of others whose opinion directs the course of my care.
And I know I am not alone in these moments of medical gaslighting or in my fear of having them repeated.
A forty-year-old woman living with obesity walks into the orthopedics office with a broken elbow. As the nurse scurries to grab the supplies needed for the cast, she mutters out loud: “I hope we have enough plaster for the size of your arm. You need to start taking better care of yourself; it doesn’t look like you’re taking this seriously.”
A twenty-five-year-old woman on anti-anxiety medication talks to her cardiologist about the state of her congenital heart defect and asks whether he can run some tests to assure her that she still doesn’t need intervention, since the last time she was evaluated was five years prior. The doctor tells her, “Have you spoken with your psychiatrist about this? That should have been who you went to see first. We have a lot of patients waiting for scans who are much sicker than you look.”
A thirty-two-year-old woman asks her gynecologist about long-term birth control. The doctor asks about when she’s planning on having children. She informs him that she has no plans to have children. He asks her how many sexual partners she’s currently juggling and she tells him she’s in a monogamous relationship. He says, “You’re still young enough to have a family. Did you just make this decision on your own? Is this what your partner wants? You need to think about both your futures.”
A woman in her seventh month of pregnancy finally visits an ER after her gynecologist has assured her that her swollen hands and feet are normal. In her gut, she still feels something is wrong. She demands a workup for preeclampsia, but the ER doctor says, “I don’t believe your gynecologist wouldn’t listen to you if she felt you were at risk for preeclampsia. I’m sure she must have run tests; you probably just didn’t understand what she was explaining to you.”
Would you continue to seek care, if you were these women?
Making you feel ashamed or crazy isn’t the goal of medical gaslighting. Your feelings in the moment provide very little satisfaction to the person gaslighting you. It’s how this shame motivates your actions that makes medical gaslighting the perfect tool for an overburdened healthcare system. Being shamed for coming to the doctor deters women from returning—not just to the doctor who gaslit them, but to any doctor. It creates a feeling of distrust and hopelessness—not just in the doctor, but in the practice of medicine and in the patient’s understanding of their own body.
It sows doubt about how much you, the patient, know yourself. What feels undeniable in the moment you experience it is suddenly reassessed. Maybe the pain wasn’t that bad. Maybe you overreacted. Maybe that is a normal amount of pain to live with. Maybe you’re just not a strong person. Maybe you’re just whiny. And pathetic. The nurse certainly gave you a look like you were wasting her time. And now you’re sitting in the bay of an ER room, getting the Tegaderm ripped off your arm as they discharge you with an ambiguous diagnosis and an even more ambiguous set of instructions to follow before seeing your PCP, when he has an opening, in a month. Maybe you shouldn’t even follow up. Maybe you’re better off taking care of it yourself—with whatever you have on hand. Even if it’s what you were already doing before you finally got up the courage to seek help in the first place.
But turning away from care doesn’t fix healthcare. And it definitely doesn’t fix you.
Studies have shown that men are 75 percent more likely than their female counterparts to be treated with powerful opioids when presenting to the ER with acute abdominal pain.3 They also showed that women, on average, are diagnosed with cancer 2.5 years later than men.4
Many women can’t afford to lose such precious time. Take the story of Brenda Barham, who, at forty-eight years old, left her father’s funeral with a tickle in her throat. She was grieving, not just her father, but her sister, who had also passed recently—both of lung cancer. Brenda had been coughing a lot and didn’t feel well. But she chalked it up to grief and the stress of raising two children on her own. Brenda was an ex-smoker of five years. And she had been recently arguing with her general care provider, one provided to her by state healthcare, about her thyroid. Even though she was a runner who ran at least ten miles three times a week, she had been gaining weight. Her PCP was hesitant to bother running tests, but at Brenda’s insistence, she finally did. The result came back abnormal.
Brenda did have a thyroid issue, but her doctor refused to prescribe treatment and told her to try losing weight before resorting to medication. Brenda tried, but no matter how much she exercised, the weight piled on. And amid this, the tickle in her throat became a cough. The cough began to feel like she was choking. Unsettled by the experience she’d just had with her PCP, she didn’t want to go back to get it checked out. So, she waited.
Until one day, while taking care of her kids at home, Brenda suddenly felt like she couldn’t breathe. She went back and forth between taking an ambulance and driving to the emergency room—but eventually decided that an ambulance would be safer. Her mother-in-law came to watch the kids as she went by herself to a local hospital with the paramedics. At the hospital she was given a chest X-ray. It came back negative for anything concerning.
“It’s probably just bronchitis,” the doctor told her. She was relieved to see that her lungs were clear, and though she was still struggling with the thorny feeling in her throat, she went home and waited for things to get better. They didn’t. A week later, it happened again—the choking, a coughing fit that left her struggling, and, again, the cringing as she called for what would surely be another expensive ambulance ride.
The paramedics took her to a different local hospital this time. And when the new doctors told her that it was still probably just bronchitis, or even pneumonia, she questioned them.
“How can it be either of those if my lungs are clear?” she asked, and then she asked them whether the feeling could be coming not from her chest, but from her throat.
“If you’re talking, you’re breathing,” they told her. “If there was something wrong with your throat, you wouldn’t be able to do either.”
They gave her antibiotics and sent her home again. She immediately made an appointment with her primary care doctor. At that appointment, the doctor reviewed the chest X-rays and agreed: Nothing was wrong.
“You’re going through something,” the doctor said gently. “You just lost your father; you’ve lost your sister. You’re depressed—and maybe you’re under the weather. It’s a cold.”
She suggested Brenda keep taking the antibiotics and, when Brenda pressed her about the feeling in her throat, prescribed steroids to reduce inflammation as well. Brenda left the office with a heavy sense of unease. Something still wasn’t right. But she took the pills. She attended to her kids and her work. Nebulizers and inhalers were called in for her. Still, she coughed and choked. And the more she analyzed the pain and discomfort, the more confidant she felt that it wasn’t coming from her chest. It was coming from her throat.
One evening, she lay down on her sofa and found that when she lifted her head to sit back up, she could no longer breathe. Whatever was happening in her throat was getting worse. She had her daughter call 911. Her mother-in-law came to the house with a friend who would watch the kids. This time, Brenda wasn’t going to the ER alone. Her mother-in-law also advocated for her to be taken to a larger hospital a little farther away. The paramedics agreed. Her oxygen saturation was dropping.
When they arrived at the hospital, Brenda and her mother-in-law agreed: They weren’t leaving until someone did more than a chest X-ray and did something to check her throat. When the emergency room doctor came to evaluate her—while Brenda was lying half upside-down on the gurney, since it was the only way she could catch a deep breath—she and her mother-in-law immediately were on him with questions: What can we do to see what’s happening in her throat? Can we do a scan? Can you do some kind of exam? Why won’t anyone investigate this? What else could be causing this outside of bronchitis? What is your plan? This time, no one put up a fight or fobbed off their concerns. The doctor took one look at her bizarre posture and ordered the scan.
A half hour later he told Brenda the news: The issue was her throat. The CAT scan had revealed a single paratracheal tumor (one that, in the coming days, they would biopsy and reveal to be non-small-cell carcinoma) that was collapsing her airway, pressing against the walls of her throat, like a straw pinching shut. He admitted her to the ICU, where they informed her that she would have to wait for a bed to open at another hospital, one with a more specialized surgical team who would be able to treat her. While Brenda had been bouncing from local ER to her PCP and back again, her cancer had been growing. While she had begged for imaging of her throat and been told it was just bronchitis, her condition became surgically complex.
The idea of waiting for a bed to open in another hospital was terrifying. What if her tumor took that time to grow even larger? As it was, Brenda could hardly breathe. Each day she begged her nurses to do something. Anything.
“You have to help me,” she whispered to her nurse one morning. “I can’t wait anymore.”
The nurse took her vitals and ran from the room. Moments later, as Brenda faded out of consciousness, they rushed her into the operating room. They placed a stent in her throat, which allowed her to breathe as it crushed the tumor back against her tracheal wall, but it was painful, and made it nearly impossible to get any food down her throat.
The tumor grew and grew. By the time Brenda was life-flighted to a larger teaching hospital, it was too late and too dangerous to operate. She had to go through months of intensive chemotherapy and immunotherapy before the tumor shrank enough for her to be able to breathe and eat on her own.
Had they found the tumor sooner, a simple operation would have been an option.
“Had they just listened to me and believed me,” Brenda told me, “I wouldn’t have lost a year of my life. I wouldn’t feel terrified every time I have to see a doctor again.”
Brenda isn’t alone in her experience. A delay of just four weeks in some cancer treatments can increase mortality rate. One study indicated that an eight-week delay in breast cancer surgery increased the risk of death by 17 percent, and that a surgical delay of twelve weeks for all patients with breast cancer for a year (e.g., during the Covid lockdown and recovery) would lead to 6,100 excess deaths in the United States, 1,400 in the United Kingdom, 700 in Canada, and 500 in Australia.5
Brenda managed to escape death, but her experiences made her second-guess whether she knew her body’s signals and, ultimately, gaslighting from her physicians made the difference between being easily treated and her care being a painful, extended nightmare.
Disease progression and death from delayed diagnosis may be the most obvious consequences of the roads down which shaming, ignoring, and turning women away from diagnostic care can lead. For others, having experiences in which their pain or symptoms are dismissed can cause an entirely different set of dominos to topple.
I’m one of those rare few who takes the phrase “You’re just like your mother” as a compliment. I inherited her smile, her confidence, her laugh, and her sense of humor. When we meet up, we marvel at how we’ve somehow managed to pick nearly identical outfits. We share the same fondness for salmon sashimi and the same distaste for early morning meetings, and know it’s always safe to text sometime around 3 AM—when we both get up in the middle of the night to pee.
I also inherited a few other things from her, like all the unpredictable and miserable symptoms of my primary immune deficiency disease. Like many mothers and daughters, she was my first and main confidant when it came to my health issues. It was nice to have someone who “got it,” but it also meant that many of my symptoms—ones that I saw in her as well as myself—became normalized. There was a spoken and sometimes unspoken understanding that this was just how women are.
But we aren’t. At least, healthy women aren’t. And the way my mother and I managed our disease was passed down to us by the women before us, my grandmother and great-grandmother—who likely suffered from similar immune dysfunction. All of us were ignored, dismissed, and told that there was no real help for women of complexity who could not keep complaints of their health to themselves.
I managed to break the cycle with my diagnosis of primary immune deficiency. It wasn’t easy hunting down my diagnosis, and knowing the discrimination my mother had faced that had led her away from Western medicine made me mistrustful and doubtful that I would ever have a doctor take me seriously. But being diagnosed with a rare disease at last was vindication for me and my mother both, and it inspired her to go out and fight for her own diagnosis. Now, we both know better than to think that the way our bodies respond to illness is normal—and we don’t settle for living in the limbo that is an undiagnosed, untreated illness.
But our experience is not uncommon. What starts with one patient being medically gaslit can have a direct impact not just on that patient, but on that patient’s child. This phenomenon, which could best be described as generational misunderstanding of disease, can lead to the normalizing of abnormal symptoms in generation after generation of women.
Lilia Choi, thirty-nine, is a first-generation Mexican American who grew up the oldest of four daughters, and she credits her cultural and Catholic heritage as one of the reasons she and her mother had a difficult time talking frankly and directly about sex, their bodies, and especially their menstrual cycles. When she had her first period, Lilia was very much on her own. She complained to her mother about the horrendous pain but her mother assured her, “It’s normal. All normal.”
This was the “normal” their family had been forced to accept. Thanks to a lack of access to doctors, there had been no one to explore their pain. Thanks to tight finances, there had been no money to run extensive tests or have elective exploratory surgeries. Thanks to a language barrier, there had been few opportunities to verbalize the extent of their pain. Her mother, maternal grandmother, and many of her aunts on both sides had long suffered from painful periods, without intervention.
Lilia’s mother relied on her faith to guide her in coping with her discomfort, and that faith also led her to giving Lilia a pad when she first bled and telling her what she had been told: to never use a tampon because it would take her virginity.
None of this was surprising for Lilia. She unwillingly knew her mother’s views on the female body very deeply. From a young age, Lilia had served as her medical translator, tagging along to prenatal and postnatal appointments for her two youngest siblings. She would translate to her mother’s gynecologist about her mother’s painful periods in between pregnancies, and stood bedside for her mother’s traumatic birth of her youngest sibling.
At one point, her mother’s doctor had prescribed contraceptive pills to her mother. But her mother struggled with the medication and the way it messed with her hormones, and it didn’t take away the grinding pelvic pain she lived with or the recurring ovarian cysts. With medication being ineffective, her mother struggled with putting her faith in pharmaceuticals—but more importantly in the providers themselves. Mexican American women in general were still grappling with the egregious mistreatment of patients like them in Los Angeles in the 1970s—mistreatment brought to the fore by the landmark case Madrigal v. Quilligan,6 filed by ten Mexican American patients who had, as a result of a language barrier, been forced or coerced into consenting to sterilization during labor.
Lilia’s mother wanted to guard her children against the predatory nature of the US medical system. When Lilia suffered from anemia in early childhood, she was forced to eat liver and beets, rather than take traditional medication, in the hopes of elevating her iron levels and treating the disease more organically. Medications were not as trusted as Vicks VapoRub and hot tea, which were the cure-alls for everything. So, when it came time to discuss contraceptive pills as an option for Lilia’s suspected endometriosis, her mother strongly dissuaded her from using them, fearing that Lilia would deal with the same side effects she had and end up entangled in the treacherous and unending cycle of needing regular medical care through untrustworthy physicians.
When Lilia finally started college at age eighteen, one of her first stops was the student clinic, where she finally hoped to get some answers about her body. She explained her terrible periods. She asked for the birth control her mother had warned her against but that she had desperately wanted in high school. It was given to her, and for two years she went back and forth to the clinic, continuing to complain of terrible period pain and pain between periods. The clinic referred her to a gynecologist with a specialization in endometriosis. By age twenty, Lilia was undergoing laparoscopic exploratory surgery to make the diagnosis.
Lilia suffered with progressively worsening endometriosis for years after—but she didn’t do it silently. She pulled aside her sisters and her cousins, asking them about their periods and symptoms, encouraging them to speak up at their doctors’ appointments to request testing, and making sure they knew that this was not normal. Her mother eventually had a hysterectomy at age forty-four. Lilia would go on to have hers not long after, having her only child at age thirty-seven.
This kind of generational misunderstanding of disease is a reality not just for Lilia and her mother, but for many mothers and daughters who share a similar diagnosis. And the consequence is not just the loss of the years these women miss due to gaslighting, years that could have been spent understanding and treating that illness, but the years stolen from the women who come after them, women who will also be trained to be painfully resilient, when they could have had peace in their bodies.
Though the journey was a long one, Lilia may be considered fortunate to have been diagnosed with endometriosis. For many, identifying an irrefutable cause for their symptoms is a mercy that never comes. Instead, they aregaslit into believing that their disease is a fault of their character or simply “just the way women are.” Many never get a true diagnostic process, and instead are shamed and sequestered to deal with their disease alone. This is thanks in large part to two things that often go hand in hand: the overuse of assigning diagnoses of exclusion and attributing disease symptoms to mental illness.
Prior to, well, science, most everything was a diagnosis of exclusion, and that diagnosis was female delirium. Is it the plague? Is it the pox? Is it a corpse? No? Must be a mad woman. However, we now recognize many conditions once thought to be symptoms of hysteria as diseases like lupus, irritable bowel disease, epilepsy, endometriosis, uterine fibroids, and meningitis. These conditions were verified by the scientific process. They were found in the blood, in scans, with the medical technology we have become so familiar with today. And giving them a name gave the scientific community the impetus to research them, crowdsource patients for data, and eventually create treatments for them.
When done correctly, this system—funnel similar patients into sects, then research to further separate them and reduce disease misunderstanding—can produce life-altering and life-prolonging research.
When done incorrectly, it can result in a vast number of women in pain with few to no treatments that work across most of the disease population.
Take, for instance, fibromyalgia. Fibromyalgia is a chronic nervous system condition that presents with abnormal pain perception processing. The cause has been identified as an imbalance in the brain chemicals serotonin and norepinephrine. However, your doctors can’t observe your brain chemicals, because they don’t have the testing or equipment to do so. Instead, they test you for things we know commonly look like fibromyalgia, and if you don’t meet the criteria for those other things, congratulations! You get diagnosed with fibromyalgia! Strap in for a lifetime of aches and pains, dubious stares from new physicians, and treatments that barely take the edge off the symptoms destroying your life.
So, what conditions cause pain and symptoms like fibromyalgia but can be tested for? A lot. Enough that you would need to be worked up by a rheumatologist, an immunologist, a hematologist, an endocrinologist, a gynecologist, a gastroenterologist, a dentist, a neurologist, and a urologist, for starters. However, it is a rare few patients with the fibromyalgia diagnosis who have had access to such thorough diagnostics. And even if you have that kind of access, there’s still a universe of genetic conditions we are aware of that could be the cause—and an unknown number of genetic conditions we don’t yet understand.
Fibromyalgia patients are not alone in this. Those suffering from the clusters of symptoms otherwise known as irritable bowel syndrome, long Covid, adult-onset Still disease, psychogenic nonepileptic seizures, and so many others are living with diseases that have been named but are not truly known.
The sad truth is that these conditions are very much real. But when doctors fail to thoroughly work patients up for an accurate diagnosis and instead push them into a diagnosis of exclusion or mental illness—the problem isn’t just that they aren’t able to access the treatment they desperately need to get better. They also pollute the data pool. Which means that patients who actually have these conditions won’t get new treatments or therapies that work for them—because they’re being tested on patients with a multitude of other (just as real, but undiagnosed) medical conditions.
For some patients, getting a diagnosis of exclusion can be a relief. They’ve waited so long to put a name to the experience that they don’t care what it is—or what stigma their medical records are now stained with. They may sacrifice the potential for a treatment that works in exchange for just having a community of similar patients in which they can feel supported.
They accept the bare minimum because it’s the only option they’ve been offered.
Although living with a diagnosis of exclusion may be unsettling, since there’s no genuine method of verifying it, at least you can say: I know something is wrong. I can even narrow it down to something. There are far more nefarious ways to be inaccurately diagnosed, like when a doctor says they believe you about your symptoms to your face while eviscerating your character in coded language.
Covering the Bases in a Diagnosis of Exclusion or Mental Illness
If you have one of the above-mentioned diagnoses in your medical records, you should ask yourself the following questions.
•Did I ever get a second opinion on this diagnosis?
•Did my doctor base this diagnosis on my age, gender, weight, and description alone—or did they do blood tests, X-rays, CAT scans, or MRIs?
•Did I see different doctors in different specialties?
•Do other patients with this diagnosis have most of the same symptoms as me?
•Did the prescribed treatments for this illness (if there were any) have any impact on my symptoms?
•If my diagnosis had to do with my mental health, did I seek out confirmation from a mental health professional?
When a doctor doesn’t know the answer but doesn’t deem the issue worthy of a diagnosis of the body, they reach for a diagnosis of the mind—or, more ambiguously, a neurological disorder, so as to avoid the certain pushback they’d get from telling a patient point-blank: “This is all in your head.”
Being diagnosed with hysteria probably didn’t evoke outrage or humiliation back when it was first used. It probably felt just as valid to people back then as newer terminologies do today to those who don’t quite understand their history. These days, the medical community has fun new ways of diagnosing women with hysteria. You’ve probably heard of Munchausen syndrome (now known by its politically correct name, factitious disorder), in which a patient pretends to be ill. Or somatoform disorder—also referred to as functional neurological disorder (FND) or conversion disorder—used when a patient is experiencing physical symptoms, but doctors don’t know what’s causing it. To be clear: The takeaway in all these cases is that your symptoms are no longer worthy of being investigated, because they’re all in your head.
The thing is, we are all capable of having mental illness. The field is wide and getting wider each day. We understand more now about trauma, abuse, brain chemistry, and mood disorders than ever before. We’ve also come to better understand the impact that our minds can have on our bodies. The validity of conditions like factitious disorder and FND aren’t in question. Their diagnosis in women who have been undertested and underevaluated, however, is, and labeling symptoms as the result of a somatoform disorder without the right testing and evaluation throws an entire segment of sick women under the bus.
As the Mayo Clinic defines it, FND “features nervous system (neurological) symptoms that can’t be explained by a neurological disease or other medical condition. However, the symptoms are real and cause significant distress or problems functioning.”7 The Cleveland Clinic describes it as “a condition where a mental health issue disrupts how your brain works. This causes real, physical symptoms that a person can’t control. Symptoms can include seizures, weakness or paralysis, or reduced input from one or more senses (sight, sound, etc.).”8
Though many neurologists constantly and firmly insist that functional neurological disorders/conversion disorders are not mental illnesses, when pressed about what might cause these conditions, the answers always lead back to stress or psychological trauma. FND is associated with having an anxiety disorder, dissociative disorder, and/or personality disorder. Risk factors also include physical or sexual abuse and childhood neglect.
The treatment? Psychotherapy.
The same treatment is prescribed for factitious disorder, in which patients deceive others by convincing themselves they are ill or purposefully making themselves ill by self-injury. The symptoms include being overly knowledgeable about their condition, having vague or inconsistent symptoms, having symptoms that do not respond to the standard of care, seeking treatment from multiple different doctors, and frequent hospitalization. You know, kind of like what you’d expect from any reasonable human if they had the will to live and found themselves experiencing devastating symptoms that impacted their lives.
Somatoform disorders and related mental illnesses are often overdiag-nosed, before patients have received a full and comprehensive workup for their complaints. What is even more confusing is that the doctors giving those diagnoses are usually not in the mental health profession at all.
“Any medical doctor that does not have specific training in mental health diagnosis should not be making a psychological diagnosis. Instead, if they suspect mental illness and are not trained to provide mental health, they should make a referral to a licensed mental health provider for a psychological evaluation,” says Michelle Massey, a licensed therapist who specializes in patients with chronic and crisis illnesses. “This can be a provider trained to diagnose a mental health condition that is licensed; a licensed independent clinical social worker; a master’s level clinician; or a PhD or PsyD. Often, primary care physicians are trained to diagnose depression and anxiety . . . but anything other than that should be referred out.”
Many patients will never hear themselves being diagnosed with somatoform disorders out loud. Instead, they will go online after an appointment and find these under the diagnoses list in their electronic medical records, a hastily scrawled judgment that throws up barriers to more educated guesses from new physicians and condemns them to a future filled with fighting against the tide of medical prejudice.
This failure to take the time that’s needed for proper diagnosis damns all patients. As we rush to label women as anxious, depressed, or dealing with a somatoform disorder, we muddy the waters of what we understand about all of it: physical illness, mental illness, and psychosomatic illness. We confuse statistics that could help us determine a patient’s future, and we doom women to never truly knowing themselves, their bodies, or their minds.
We leave ourselves with so many unanswered questions, but only one really matters to those who are fighting for their lives while clinging to their dignity: Just because a doctor doesn’t know what’s wrong with me or how to fix it, does that make me crazy? Or does that just make them lazy?
We trust our doctors to guide us through the worst moments in our lives. We follow their advice, expect that they’ve done their due diligence, and believe that they would do us no harm. We comfort ourselves with the idea that when we don’t know how to fix things, they will. At least, that’s how many women feel before their first experience with medical gaslighting. And it’s why some of us don’t ask questions until it’s too late. That false sense of security can be our downfall. Because when doctors appear understanding and compassionate, it can lure you into consenting to procedures that aren’t effective and have consequences far greater than the original illness or injury. They can lull you into a state where you don’t question the process or think you need to advocate.
We’ve talked about the tone of medical gaslighting not always being loud or insulting, but compassionate and kind. It can look like a doctor who is willing to prescribe anything, but who fails to do the necessary workup to make sure those treatments make sense for your illness. It can be a failure to educate and counsel you along the way, which you don’t even notice because your doctor’s kindness, compassion, or camaraderie convinces you they have your crisis under control. These interactions can have a domino effect, and the consequences can mean loss of life or limb.
For Meaghan Giovannetti, this was her experience.
When Meaghan was fifteen, her life revolved around her friends, her grades, and, most importantly, soccer. As a teenager in upstate New York, she spent her afternoons on the field and her weekends with her family. One of those family weekends in particular stands out in her memory—because it was the start of a series of medical events that would eventually lead to eight years of medical devastation.
Meaghan was climbing out of her grandmother’s above-ground pool after an afternoon swim when she accidentally swung her leg forward and smashed into the cement wall on the side of the pool’s railing. She knew instantly that something bad had happened. She felt a sharp pain and then a dull throbbing in her toe. She was still able to pull herself out of the pool and sat in the grass so she could assess the damage. Her foot quickly began to swell and turn black and blue. The doctor at the local emergency room tried to see if the foot was broken, but the swelling was so bad he couldn’t give a definitive answer just through his exam. He took an X-ray and saw that the bone in her toe had chipped.
“Will I still be able to play soccer?” Meaghan remembers asking. The doctor assured her she would be fine, but would need to follow up with an orthopedist and keep trying to walk on the foot. The pain and bruising didn’t improve. And by the time Meaghan saw the orthopedist a week later, her foot was purple, still swollen, and cold to the touch. It hurt to wear socks; it hurt to even have cold air touch her foot.
The orthopedist took another X-ray. He didn’t know why her foot wasn’t feeling better at this point. He pointed out that a broken toe shouldn’t cause temperature changes. He said the pain she was feeling was abnormal and he diagnosed her then and there with reflex sympathetic dystrophy (RSD), or what is now known as complex regional pain syndrome (CRPS), a condition that causes severe burning pain in the limbs, changes in skin temperature, and decreased ability to move the impacted body part.
He did no further imaging, no MRIs or CAT scans, despite CRPS being a diagnosis of exclusion, meaning all possible diagnostic tests should have been run to rule out nerve damage, tendon injury, and many other possible issues that cannot be seen with a simple X-ray. But fifteen-year-old Meaghan didn’t know to ask for any of this, and neither did her parents, who took the doctor’s word at face value. He quickly referred her to a physical therapist and a pain management doctor.
By the next week, Meaghan was in even more pain. It was all- encompassing. When she was introduced to her new pain management doctor, Meaghan liked her immediately. She was a kind woman who gently told Meaghan and her parents that she was there to help, and wrote her a prescription.
When they went to pick it up from the pharmacy, Meaghan opened the box of medication and stared. They were lollipops! Meaghan remembers staring down at the fentanyl-laced oral transmucosal lozenges on a stick, which she’d been told to suck on until her pain went away. She didn’t know how addictive they would be or what their side effects were. Neither did her parents.
This began the medication roller coaster. First came the lollipops, then the patches, then an enormous dosage of nerve-pain medication called gabapentin. After that came amitriptyline, nortriptyline, Cymbalta, Lyrica—her pain doctor kept prescribing and her pain kept getting worse. They stacked the medications but would sometimes add some in and pull others out of play as they tried to feel out what was organic pain from the injury and what was a side effect of other medications.
When nothing worked, Meaghan confided in her doctor about how hopeless she was feeling. That’s when she was told about a spinal cord stimulator—an implanted device that would send low levels of electricity directly into her spinal cord to relieve her pain. Meaghan and her mother felt hopeful about this—it would reduce the amount of medication she had to take. Just one surgery to put it in and it would start working.
Surely this was the answer she had been looking for. Not only would it let her stop taking so much medication, but her pain management doctor even hinted that she might be able to play soccer again. She was excited for the day of her surgery. Her pain doctor had warned her it would be a hard recovery, with three days spent in the hospital. But Meaghan still felt the trade-off made sense. One rough surgery and she’d be normal again.
It was not one rough surgery. Over the course of the next six years, surgeons would cut into her back over thirty times to adjust leads and try to get the device to work. From the moment she woke up in the hospital, Meaghan realized the device was not as simple as her doctor had suggested. It came with a clunky remote she always needed to have on her—one she definitely couldn’t play soccer with. She couldn’t even fit it in her uniform pocket.
When they turned on the device, it sent waves of electricity through her spine. On one setting the vibrations were too strong, but when she lowered the setting, they were too light to be effective. Her doctors wondered whether the device leads were in the right place and if they should adjust them. Every time they went in to surgically adjust the device, she’d have to lie flat for forty-eight hours to avoid a cerebral spinal fluid leak.
Within six months, she had to drop out of school. The pain was too much, the spinal cord stimulator caused its own new set of problems—and getting off her pain medications? That never happened. By her first year of college the pain had migrated. No longer was it just wrapping its way up her legs and lower back—it had now started reaching her other limbs. Specifically, her left hand.
One day, she noticed three of her fingers had started to curl in toward her palm, and no matter how hard she tried to straighten them out, she couldn’t. She immediately showed her physical therapist. He wasn’t sure what had set off the issue—whether it was a progression of the disease, a mishap resulting from the uncontrollable spinal cord stimulator, or something else. He advised her to wait it out and see if things improved. They didn’t. The nail of the pinky and index finger started to bite into her palm. Her ring finger dislocated completely. When she brought it up to her pain management doctor, the only doctor still treating her at this point, the doctor told her it was just part of her RSD/CRPS diagnosis—and that “these things happen.” She also belatedly made it clear to Meaghan that no more imaging could be done because with the spinal cord stimulator in place, Meaghan could no longer get an MRI to see what was happening in her hand.
Meaghan had started to lose faith in her pain doctor at this point, the promises she’d made about the spinal cord stimulator and eventually being able to play soccer again fresh in her mind. Her physical therapy appointments became a living hell, where multiple times a week, for forty-five minutes, someone would try to pry open her hand. The nails on her bent fingers had started growing into her palm, and with the position her fingers were in, she couldn’t cut them. They had Meaghan stick her hand in sensory bins of rice and corn kernels and warm beads, as they tried to reignite her nerves and muscles. This did nothing but allow small pieces to get caught up between her fingers and cause infections. She would cry the entire way through her sessions. It was exhausting.
A year passed like this. Finally, her pain management doctor confessed that the situation was simply out of her scope of expertise and told Meaghan it was time to see a hand surgeon—that someone would need to cut the tendons to allow her fingers to detach from her palm.
She saw ten different hand surgeons between Syracuse and Rochester. But not a single surgeon agreed to cut her tendons, even though, at this point, she was begging them to do it. If they couldn’t do an MRI, they didn’t know what the problem was. If they didn’t know the problem, how could they know whether this was the best course of treatment? They left her in limbo.
Finally, Meaghan approached the last surgeon on her list. They were empathetic and understanding, and commiserated with her on what she had been through. Then they gave her the bad news: They would have to amputate her fingers. At this point, she did not care. She did not care about her hand, her fingers, her future. She just wanted the pain to end. She wanted it all to be over.
Of course, she knew it wouldn’t be. Even removing her fingers wouldn’t get rid of the now-full-body pain associated with her condition, and she was likely to have phantom limb pain after the surgery. The surgeon told her they would do the procedure there in their office, with twilight sedation. They gave her a nerve block in her arm so she wouldn’t feel the bone saw. She never went to sleep. She heard the bone saw. She cried and begged them to put her fully to sleep. They ignored her.
After, nobody talked about physical therapy to help with her remaining pain issues, or to regain function of the remainder of her hand. They sent her home with ibuprofen.
The infections cleared up, but Meaghan was still in daily crippling pain. She tried to keep going on with her life. She moved to Albany and switched pain management doctors. The new one put her on the last few treatments she hadn’t tried, including a pain pump and ketamine pills. At some point, she was admitted to the hospital for a pain flare. There, she developed hospital-acquired sepsis and pneumonia. The hospitalists started tinkering with her pain meds. They went over the FDA-approved amount of pain medication, which caused an acute kidney injury. So they pulled her off all pain meds and started dialysis.
These were not medications that should be stopped outright. Withdrawal threw Meaghan into a full mental breakdown. She hallucinated. They wanted to have her committed. But her mother advocated for her and had a psychiatrist called in to show that her mental state was due to being pulled off the pain meds.
Her only saving grace was not having to go through the very painful physical symptoms of withdrawal since her blood was going through a dialysis machine. Eventually she was discharged from the hospital and into her mother’s care.
It was like being a newborn—like waking up from a long nightmare. She was twenty-three. Eight years of her life had been lost to a storm of medications, surgeries, and pain. She was coming back into her body again, and it took months of relearning how to deal with being so clear-minded, so unmuddied by medications and their side effects. She stopped going for pain management—not because she was out of pain, but because of the horror about how she was counseled and treated. She turned off her spinal cord stimulator and never used it again.
Now Meaghan is thirty years old. She looks back on this time in her life as she studies for her master’s degree in counseling with a mix of emotions: fury at her doctors for taking advantage of her, disbelief that she and her parents had so willingly believed and taken medical advice from physicians who had only ever run X-rays on her, grief for so many years lost to over-medication, and empathy for the fifteen-year-old version of herself who just wanted a normal life.
Because of those years spent struggling for adequate pain relief, Meaghan now questions everything her doctors tell her. She does endless amounts of research. She is in therapy to heal nearly a decade of torture and trauma. And she shares her story not just as a cautionary tale, but also as one she hopes will reduce shame—the very thing that stopped her from asking questions.
“I didn’t know then to ask for a second opinion, to take research into my own hands, and to ask questions,” she says. “Now I know to question everything. That’s all I wish I could tell a younger version of myself: Question everything.”
We are not as safe as we’d like to believe. When it comes to our medical care, we are not walking around a gated neighborhood in broad daylight, but rather down an unfamiliar alleyway in the dark. We need to know that the roads are not as evenly paved as we’ve been led to believe, and if we trip and fall it’s very possible that no one will come running. It’s up to us to be vigilant and awake.
The medical system is a series of dark alleys, and we need to prepare ourselves for what might come crawling out of the shadows. We must arm ourselves—with curiosity, with questions, and with the audacity to believe in how much we know about our own bodies. Because for women in the American healthcare system, the more trust you place in your providers, the less likely you are to do your own research, and to understand the consequences of major treatment choices.
The stakes are too high, the consequences too dire, not to be our own best advocate.
But before we dive into the techniques and tools you can use to advocate for yourself, we’re first going to take a moment to dig further into a concept we touched on a couple of chapters ago: medical bias, and how it can increase your chances of being medically gaslit.