You’ve researched and planned. You know every detail about your medical history and you’re ready to fight for the care you deserve. You walk into that exam room as prepared as you can possibly be—and you still find yourself flinching when the gaslighting begins. Your confident demeanor starts to falter. Are those tears forming at the corners of your eyes? Did your voice just crack? Your plan—and with it, all your hopes for relief—seem to crumble.
You knew the gaslighting was coming—but that doesn’t change the fact that when you find yourself facing it, you may not know how to respond, or how to recover if you initially (and understandably) respond poorly.
If you’re a chronically ill patient, medical gaslighting is not a situation that’s going to happen only once. Unfortunately, it’s a situation you’re likely to run into pretty frequently. And the first time it happens, your reaction will probably be an organic one. You might feel frustrated, overwhelmed, angry, or hurt. You might cry, snap at the doctor, overzealously explain your situation, or slam the door on your way out.
But the next time it happens, you’ll know that whatever emotion you exhibited last time didn’t help. So, what will help?
There are multiple potential strategies for responding to medical gaslighting, but each of them boils down to the choice you have to make on what you’ll do next.
Will you fight for your situation to be understood with this doctor?
Will you leave and try to find a different doctor who won’t gaslight you?
Or will you just try to get through the rest of the appointment without calling out this doctor’s behavior or how you feel about it?
There are many ways a woman might respond to the shock of being medically gaslit in the moment that it happens—with disbelief, with anger, with tears. But while we may not be able to control our knee-jerk emotional reaction to gaslighting in those first few seconds, we can make choices about how we show, conceal, or utilize that reaction. Because after the moment of whiplash is an opportunity to make a choice about how to move forward.
You may have heard of the three basic threat responses coined by American psychologist Walter Cannon: fight, flight, or freeze. These acute stress responses are biological—they happen naturally, without us thinking about or planning them. They’re our body’s way of protecting us from harm. We prepare ourselves physiologically to either fight the monster or flee from it, or else we freeze, disassociating from the monster in order to protect our mind from the trauma. When you face medical gaslighting, you react to that threat the same way you would to a 400-pound fire-breathing monster charging toward you. Your outward response just looks a little different.
You might freeze, and submit, by agreeing to a diagnosis or treatment plan (or lack of either) that you don’t think is valid under the circumstances—and then either following the proposed plan or not. This is the path that most women are forced to take, not because they’re not strong or capable, but due to fear, a lack of resources, or simply not knowing that there are ways to engage in a discourse that can produce a different outcome.
You can take flight, by leaving and trying to find another provider who will treat you with more respect. But only if you’re privileged enough to have that choice. Many don’t, particularly if they’re low-income, living in a rural area, in a crisis, or dealing with a small insurance network.
And then you have the third possible response: fight. But fighting can be tricky. Fight well and you’re an advocate, a collaborator in your care that holds your doctors accountable for their work. Fight “wrong” and you’re aggressive, noncompliant, a little girl having a tantrum.
In truth, any of these approaches can be productive or unproductive, depending on how you use them. Unproductive freezing, taking flight, and fighting are things we have probably all been guilty of at some point in our medical journeys. Don’t lament the days before you had the information you have now. You lived . . . and then you learned to do better.
I am going to present to you a scene that may feel familiar, along with examples of each of these potential responses. If you find that you’ve been a character in this play and did not know your lines—that’s OK. Perhaps they were not given to you, or perhaps they were given with instructions that urged you to think them but not verbalize them audibly. Perhaps you were too scared to deliver them. If you are reading them now, trying to build up the nerve to speak, I hope they give you the confidence to face whatever is on the other side of the curtain.
You are here again in that exam room and so is he. Before this appointment you saw the test results come through on your online portal. Your phone pinged; you looked through those familiar lines. To your frustration, they were all in range.
“This is a good thing,” your doctor assures you. “All of your tests are normal, which is great.”
It is not great. It is miserable. It is another dark hallway behind a door you fought long and hard to unlock. You put your phone face down on the desk between you and wait for the inevitable brush-off.
“Maybe it was just stress,” your doctor says, and he means this to be reassuring. “You mentioned work has been busy these last few months.”
Work has been busy. But it has been busy before. And unlike the last time it was busy, this time you fainted in line at the grocery store on a Saturday morning. You find yourself taking unexpected naps in the middle of the day. Your heart sometimes skips beats, leaving you coughing as it tries to regain a normal rhythm. It is not just stress.
“Why don’t you take some vacation days and relax? Or try a new way of relaxing after work? We offer a free virtual meditation class through our website,” the doctor says.
Even as you sit here now, you feel dizzy. You’re also frustrated, and you don’t want to suggest a connection between the two. You were dizzy before the results came online and you’re dizzy still.
You would like to tell the doctor all of these things. To reiterate how unwell you feel, to point out how you have managed stressful situations all your life, and though you have had emotional reactions that gave way to physical ones—like when you found out your pet died and developed a migraine from hours of crying—you know in your gut that this is not normal for you.
And that right there is the answer the two of you disagree on: What is normal for you?
This doctor doesn’t know you well enough to determine this. All he can see is the test results, which are, exactly as he says, normal.
You have already spoken to your doctor about your symptoms not being your normal. And he has brushed that off as something that, against his test results, no longer holds weight as a valid reason to keep pursuing a diagnosis.
But you’re not planning on walking out of this room without help. You know in your gut that something isn’t right. Maybe your doctors just haven’t keyed in on exactly what that thing is yet. The first step is to get a clear understanding of what’s already been ruled out. Then you can talk about what hasn’t been. Here’s what you might say at this point in the visit:
“Can you walk me through what it was you were testing for with the bloodwork we’ve done so far?” Meaning: either that I am normal or that I am what exactly?
“Happy to,” the doctor says. “You mentioned fatigue, so we did some testing on your thyroid levels.”
Thyroid tests. One measly marker to go by, despite all the symptoms you had mentioned in your previous appointment: fatigue, which can be a thyroid issue, but also vertigo, nausea, and fainting. Your body is a universe of data to be explored and you’ve had one panel run on you before having your concerns reduced to stress.
“If it isn’t my thyroid,” you say, calmly but firmly and with an air of curiosity, “and if my stress is the same level it normally is, what else might be the problem here? Remember we talked about vertigo and the fainting too. I’m sure the thyroid isn’t the only cause of symptoms like that. What else do you think could cause this?”
Now you’ve left a door open for a conversation to happen. And at this point, your doctor has to make a choice. Either he’s going to choose to collaborate, or he’s going find a new and creative way to shut you down; you’ll be able to make a choice at that point between freezing or fleeing—or continuing to fight.
“What else do you think could cause this?”
Your doctor puts your file down on the desk between you and sighs. He looks at the clock. He looks at the ceiling. But does he not look at you.
“Fainting once is not that big of a red flag,” he says. “We’ve all fainted at least once in our lives. It happens. The important thing is that your tests indicate it’s not a larger problem. If your thyroid levels had been abnormal, I would have referred you out to a specialist, but for now, I think you should just wait and see. If your symptoms get worse or it happens again, we can have a conversation about it. I think this is mostly just a stress response. I can give you a prescription for anxiety medication.”
This doesn’t sit well with you. You have already waited. You have already seen. What exactly are you waiting for now? Do people at the grocery store need a second viewing of you knocking over the Thanksgiving display as you hit the ground? You weren’t panicky before you fainted, so what help would anxiety medicine provide? Does knowing it is not your thyroid but not knowing what the problem is supposed to be a relief? You do not feel relieved.
You struggle to figure out what to do next. You find yourself crying; you turn your face away. The doctor offers you a tissue and you shake your head. He puts it back down and scoots closer. He tells you that there is nothing to worry about, that you just need your husband to take you on a nice date night. You just need to take your PTO, and sit down with a glass of wine and watch some mindless reality TV.
He doesn’t understand, but he has been kind and it feels rude and impertinent to argue now. In your head you think: I’ll book an appointment with another doctor. But do you really want to have this conversation again? What was the point of coming here at all?
You hold back your tears until you get to the car. The doctor sends the prescription electronically to the pharmacy, but you won’t pick it up. Back in the waiting room as you exited, you stopped at the front desk and let them know you didn’t need a follow-up. You will find another doctor, or you will come back with a stronger argument that you’ll send through the patient portal. You’re not going to waste another afternoon trying to figure out if this doctor has enough interest to help you. But you’re not going to quit either.
“What else do you think could cause this?”
Your doctor meets your eyes. He might even place a steadying hand on your shoulder.
“You should be happy your tests are all normal,” he says. “I have a patient in the other room who just got diagnosed for the second time with lung cancer. That is a test result you don’t want to hear! You’re young and healthy enough, but you need to start taking better care of yourself. Eat a healthy diet. Get plenty of exercise. And start managing your stress in ways that feel helpful for you. I do need to get to my next patient, unless you have any more questions for me.”
Your anger and frustration are visible. You tell the doctor that you are not happy your tests are all normal. You tell him he did a lousy job, and you have no idea what you’re supposed to do next. You still need—you still want—you still . . .
At this point you allow your frustration to overwhelm you. You think if you just express how important this is, he’ll do something. You stare at him with pleading eyes, as if he will come up with a genius solution. He doesn’t.
Finally, you grab your coat, give him a scathing look, and leave.
You know everything you need to know about what’s available in this room. You don’t have any questions for this doctor, except for one: “I understand this issue feels like it’s out of your scope of expertise. Is there another specialist you’d recommend I see?” The doctor might feel offended and he may reiterate his dismissal, but he may also give you a recommendation. Either way, you thank the doctor for his time and leave. You’ve wasted no more energy or words on someone who is just going to steal more of your peace. You’re barely out of the building before you’re back on the phone, making an appointment with someone else.
“What else do you think could cause this?”
Your doctor shrugs, then sits back in his chair and thinks for a moment. He reiterates that he ran the blood panel for your thyroid, and that the rest of your symptoms aren’t terribly concerning. You can tell where this is headed—so you intercede before he can say that he doesn’t know what else to do.
“I don’t think you’ve done enough,” you start out, and your tone is not disappointed, but outraged. “You just tested my thyroid and then you give up? You need to do better than that. I can’t go home feeling this bad and not having an answer.”
The doctor nods, but instead of agreeing, he says, “You sound upset. I understand how frustrating it can be to not feel like you know the answer.”
“It is!” you agree.
Neither of you speak for a moment, and then he asks, “If any other symptoms come up, feel free to make an appointment. In the meantime, would you like me to recommend a therapist to help with your stress?”
You tell the doctor that you appreciate him checking your thyroid and tell him you agree that it was a reasonable place to start, but now that you’ve ruled that out, you’re ready to proceed with more testing. You agree that for some patients it might be normal to faint in a grocery store, but it was quite unusual for you, considering you’ve never fainted before in public or at home. You throw the ball back in his court for a moment—besides stress or a bum thyroid, what else could cause someone to faint and feel these other symptoms?
“A lot of things can cause these symptoms,” he says. “The most likely one is stress. I see this all of the time. But if you’re still concerned and it would help to put your mind at ease, we can run an EKG. And if that’s abnormal I can refer you out to cardiology to see if it’s an issue with your heart. Your most recent CBC doesn’t indicate anything else in that area, but they would be the experts. We could also have you track your blood sugar for a week and see if we notice any dips that could be causing you to feel faint. Maybe you’re not getting enough from your diet. We could refer you out to an endocrinologist or nutritionist if we see anything alarming while tracking your blood sugar.”
It’s an ambivalent response to a situation that is causing you a lot of distress, but it gets the job done. More testing means more data. It means you’ll be closer to figuring out the problem—even if this doctor doesn’t “feel” like it’s a problem, or their problem.
“I think that sounds like a great idea,” you say. “Let’s start there.”
You already feel threatened by the illness itself. You’re in a vulnerable state. So, it’s not a surprise that when the first blow hits, you find yourself losing control. That before you can come up with a logical response, you’re overcome by the hopelessness of the situation. You’ve made the effort; you’ve come to ask for help. And you’ve been rejected. The humiliation rises inside you and begins to leak out—in tears, in shaking hands, or in a tone you know can be heard on the other side of that wall.
In many other situations, letting yourself lose control and speak your piece can be fruitful—or at least emotionally grounding. But when the person in front of you has a stethoscope, you need to do more than speak your piece. You need to protect your reputation, your access to care, and your ability to be trusted.
It’s nauseating and I know it. I’ve clenched my jaw so hard I’ve chipped teeth in an effort to keep quiet after a doctor told me I wasn’t feeling what I was feeling.
The most important thing to know about fighting medical gaslighting is that if you lose your temper in that room, you lose. Period.
If they’re yelling, you should speak at a lower volume. If they’re flustered, you should be calm. If they’re insulting you, you should be blank-faced. Your goal isn’t to match their energy, or to get recognition or even respect. Your goal is to stay alive. The hills you die on are ones you may actually die on. So, choose carefully. Some conversations have to be had, but others do not. Your reaction to medical gaslighting has consequences that follow you outside this room.
Don’t think your reaction holds that much power? Think again. Here’s what can happen if you lose your cool in the wrong room with the wrong physician:
•You can be fired from their practice.
•You can be banned from that emergency room.
•A psych consult can be requested to evaluate you, delaying care.
•You can be questioned about your drug or alcohol use, delaying care.
Here’s what can happen if you begin to cry as a response to medical gaslighting:
•Your tears will be interpreted as evidence that anxiety, depression, or stress is the cause of your illness.
•You’ll be comforted and given mental health resources, but the door will be shut to further diagnostics or treatment options for the illness you came in for.
•You can be charged a fee for a behavioral or emotional assessment.
•Your reaction can be noted in your medical records and passed on to the next doctor who sees you.
When facing medical gaslighting head on, you should always aim to be cool, calm, and collected. That’s no easy feat when you realize you may have to leave one emergency room for another, because the doctor doesn’t believe you, or risk waiting another five weeks to get in with an alternative specialist. But expressing your rage will backfire.
Admittedly, I’m quick to lose my temper. Quicker still when I’m in the kind of outrageous pain or acute illness that sends me to the ER. I have to constantly and wholeheartedly remind myself that no amount of yelling or threatening can force a doctor into submission if he is committed to misunderstanding me, and that letting my disappointment shine through with tears will pull me further away from the solutions I need.
It’s a terrible thing to be gaslit. It’s somehow worse to not be able to react to it when it’s happening.
But your doctor doesn’t know you or the pain you’re capable of masking. They may not have evaluated you and so may not know how bad it all is just yet. So, if you cry, their initial evaluation might be that you’re emotionally fragile and more in need of help for your mental health than your physical ailments.
The first appointment with a new doctor is kind of like a first date—you don’t want to talk too much about your exes (ex-doctors, that is). Let them get to know your case—and let yourself judge their empathy first. Then, if things are feeling particularly bleak at the follow-up and you feel safe in expressing your grief, go for it.
Still, there is a clear line between firm advocacy and allowing your vulnerability to show, and being the bully or difficult patient they all sigh about after you finally leave.
So, if you can’t cry, and you can’t scream, and you can’t call the doctor an ignorant fuck—what can you possibly say to salvage the situation before you call it quits?
Bring evidence. We’ve discussed this in previous chapters, but it bears repeating here. If you want to set yourself up for success, burden them with proof. If your doctor isn’t on the same page with the severity, frequency, or reduction in quality of life your symptoms are causing, then you need to show up to the next appointment with evidence. Bring symptom journals. Take photos. Build a timeline. Bring in scans, test results, or appointment notes from previous doctors who haven’t done the workup you’re asking for to illustrate that this is still a problem that needs investigating.
Provide a witness. It’s hard to gaslight a woman in the presence of someone else. Having a secondary advocate in the room can be the difference between a brush-off and a workup. Bring your spouse, your parent, your friend, or your adult child to bear witness, back up your story, ask questions, and force your provider to take you, your concerns, and the concerns of your loved ones seriously.
Ask for clarity. Sometimes our healthcare providers are acting on unconscious bias or feeling overwhelmed by complex cases, or simply didn’t listen. If you feel they’re not hearing you, keep talking—and make your goals and expectations for the appointment clear. Repeat what concerns brought you in, and what diagnoses have previously been ruled out. Provide them with options for moving forward that don’t involve letting you go home with no plan of action. You might say, “In this appointment I’ve mentioned that I have painful periods, difficulty with weight loss, hair loss, and mood swings. I’ve told you that thyroid issues and polycystic ovary syndrome run in my family—but you say you don’t feel any hormone testing should be done at this time. Can you explain to me a little bit more about why you wouldn’t want to run some tests to rule this out?”
State what might happen. You know the reality of what might happen if your medical needs go unmet and your systems go unexamined—we discussed them in chapter 2. Perhaps those things are already happening. You might say, “I understand you don’t think there’s a need to do a colonoscopy right now, but I have been in this exact scenario before where I was unable to digest anything without pain and had significant weight loss and fatigue. Last time, we also waited to run tests and because of that, part of my intestine had to be removed. I don’t want to lose more of my intestine because we waited. I’m sure you don’t want to have to operate on me as an emergency a few weeks from now because of something we could have prevented.”
To reach out, to seek help, and to be turned away or dismissed can be absolutely crushing. And if you find yourself unable to control your expression of that emotion, you are the furthest thing from alone, the furthest thing from weak, and also the furthest thing from completely screwed. You can recover from this (unlike the chronic illness you might have come to see this doctor for).
Follow these steps to get back on track:
Recenter: Stop talking. Take a deep breath. Close your eyes for a second and ground yourself. Don’t apologize and don’t panic.
Refocus on Facts: “I am frustrated by this situation,” you can say. That much is obvious, so it’s worth acknowledging. “I’d like to review what has been done so far and what I’d like us to figure out moving forward.” Speak slowly and calmly. Don’t qualify any test or treatment with superlatives (“That was the worst test!” “That medication made me feel like death.” “That surgery was my biggest nightmare.”). You’re not expressing your feelings right now. Just facts.
Propose a Plan: What is your goal with this conversation? Come back to it now: “Do you think it would make sense for us to . . . ?” What is the problem? What can be done to troubleshoot the problem in your eyes? Explain how it is a logical conclusion to go from “I have these symptoms” (which are related to problem A) to “I would like to be treated for/tested for problem A.”
If the doctor tries to comfort you, you can say, “I appreciate the compassion, but I think what would help me most right now is to have a plan to solve this problem.”
If the doctor mocks you? Leave. There is no help here.
The definition of gaslighting is making someone question their own reality. It’s manipulation. But it’s rarely done in plain sight, in shrill tones, and with obvious threats. A doctor who lambasted every woman who asked for help wouldn’t survive in their field for long.
Some people think of medical gaslighting and combatting it as an unfeeling doctor screaming at you in a hospital bed and you screaming back. That’s rarely the case. Sometimes the gaslighting feels kind and genuine. It’s delivered with empathy. But no matter the tone, it still deprives you of what you most need: for your concerns about your body to be believed and attended to.
A doctor won’t say, “Don’t be so dramatic! You’ve had a sinus infection for a month. It’s not the plague. You’d be better by now if you actually followed my directions. You’re probably just another idiot who doesn’t know how to take antibiotics right and that’s why your infection isn’t any better.”
But they might say, “Be honest with me, have you taken all of the antibiotics, or did you skip a few? I know some patients think they don’t have to take all the pills, but they do. Otherwise, the infection will come back. Why don’t you go home, get some rest, take the rest of the pills, and then see if your condition improves?”
The first would easily get a rise out of you. It’s harsh, insults your intelligence outright, and blames you fully for a lack of improvement. The second is more insidious. The tone is almost friendly or conspiratorial. But it still assumes incompetence and dismisses you, rather than trying to understand what actually happened.
It can be hard to convince ourselves that we’re being manipulated. The doctor seems nice—and yes, you did take all your medication and you’re still not better, but maybe you somehow took it wrong? You must have done something wrong if you didn’t get better. But don’t be fooled by the tone your doctor takes during your visit. What matters is whether they put a diagnostic or treatment plan into action.
Medical gaslighting isn’t always about what is said. In some situations, it’s about what is not said—or rather, not answered. If your provider dismisses your questions, you can’t trust that you’ll be fully cared for. You also won’t feel empowered to continue learning about your care. This strain on the power balance can be disastrous, not just for the patient-doctor relationship, but for the patient’s health.
So why won’t doctors answer every question they’re asked? Not providing requested information is usually due to one of three things: a doctor not thinking through the patient’s needs, a doctor not having the information or ability to educate the patient, and a doctor not having the time to answer the patient’s questions.
Is a failure to fully counsel a patient always intentional? No. Some doctors are just busy, and forget that you don’t have a medical degree and so don’t know exactly what will or won’t happen, or that you haven’t had this problem before.
Rarely do doctors outright refuse to answer my questions (and you best believe I come prepared with a long list of them). But there is one specialty that can be more difficult than most to crack, when it comes to having an informational back-and-forth: surgeons. They spend the majority of their time with patients who are unconscious, focusing on the delicate work of slicing you open and stitching you back together. This more limited patient interaction can make them less adept at fielding your questions . . . and also less inclined to think they should have to. But like it or not, even they sometimes have to cope with the obnoxiously conscious patient who treats surgery like the serious, life-altering event it often is, and approaches the pre-surgical consult accordingly.
Still, the main barrier to making this a smooth conversation isn’t their attitude toward patient education. And you’ll realize what it is after about thirty minutes of waiting for your surgeon to actually enter the exam room after you’ve been brought back. Surgeons have hectic schedules and every minute counts. So, a good rule of thumb is to skip the small talk and get right to the questions that can only be answered by them. Insurance issues? Scheduling? Bring it to the office staff. The clock is ticking.
I usually start by acknowledging this out loud by saying, “I’m sure you have a busy day, so I’ll try to keep this brief.”
(One thing about me: I’m not going to keep it brief. You’re literally slicing my body open, and I’m going to make sure you’re competent enough to do that. I’m just not going to start off the conversation by saying that.)
After you establish the expectation that there are questions you want to ask, start asking. If the doctor begins to pack it up before you’ve finished your list, keep saying, “Sorry! I just have one more question!” until you don’t.
You may feel selfish, taking up your surgeon’s precious time with your questions about the technical qualities of the surgery, the expected recovery time, the kind of anesthetic that will be used, or the expectations you should have for the outcome.
I’ll give you a moment to get over that while you remember: Your life is worth it. It’s worth asking questions about, and it’s worth inconveniencing your surgeon for ten minutes to ensure you don’t spend ten years regretting a surgery you were unsure about having.
Feeling a little more confident? Good.
Your doctor should be able and willing to answer all your questions in full. If there’s an issue with other patients that means they need to leave the room, reschedule the consult or see if you can send your questions through the online portal. If you don’t get a second consult or written responses, consider what that means about their commitment to managing your case. Will this doctor have time for you if things go wrong, if they don’t even have time for you now?
Practice makes perfect, and with enough encounters under your belt, you’ll be a pro at exam room conversations and handling any medical gaslighting that comes your way. Until then, however, the following tips can help. Because combatting medical gaslighting isn’t about having the loudest voice or the biggest stick: It’s about having a plan and sticking to it.
Before you go into that room, remember to follow these guidelines:
•Claim and own your challenges. In a collaboration, showing that you can see their side of the argument can be a good place to start. You’re not oblivious to the issues they’ve pointed out; you just don’t think they’re the cause of the concern you came in for. Starting here can show you’re willing to see their point of view.
•Point out your evidence. Now it’s your turn to deliver undeniable facts. These can be in the form of symptom journals, previously run tests, medications that haven’t worked, or symptoms you’re experiencing that couldn’t be related to the solution they’re recommending.
•Be confident and firm about your experience. Don’t lose sight of why you sought help in the first place. The goal of gaslighting is to manipulate you into recanting your understanding of what’s happening to your body. You know something is wrong, so don’t be maneuvered into stating that the reason you sought help was silly.
•Don’t jump off a cliff. Remember, if you’re actively being gaslit, your ability to control your emotions is under fire. Strive to remain in control of your frustration in front of the healthcare provider and their staff. Screaming, crying, or getting visibly upset can have a negative effect on your ability to be believed.
•Recognize the signs of gaslighting early. If your healthcare provider tells you that they don’t feel your pain is real, says you don’t have the capability to accurately describe pain or symptoms, or tries to shush you in any way, be aware that they are unlikely to change their minds, regardless of your efforts.
•Be prepared and educated about any likely procedures. Learn what you can about possible future procedures or other treatments before you set a surgery date or sign any pre-op paperwork. It’s harder to get yourself out of harm’s way once you’ve signed away your consent; I learned this firsthand with my port removal.
Still feeling uneasy about finding the right words, despite having all your other preparation in place? Try scripting some clear responses that you can keep in your back pocket for future appointments.
Take a look at the following examples and see how you can tweak them for your own personal scenarios and common gaslighting experiences.
If They Say |
Then You Say |
|---|---|
“Losing weight will probably resolve this issue. Come back when your BMI is within range.” |
“I understand my weight is a problem and I’m working on it. I also understand there’s a variety of things that could cause the symptoms I’m having. What sort of diagnosis would you run if my BMI was in the normal range?” “It’s going to be a lot more effective for me to get my BMI under control if I’m not feeling so sick. Let’s run those tests now and not waste any time with me suffering when I could be feeling better.” |
“Have you tried meditating or other self-care techniques? These problems can be the result of stress.” |
“The main thing that’s causing me stress is not being able to resolve this issue I’m having. So, let’s try to get to the bottom of this. What else besides stress could cause these symptoms?” |
“Well, you failed the last few medications you’ve tried. Have you considered this may all just be in your head?” |
“It feels like maybe we’ve reached the extent of your expertise here, and you might not have the ability to help me with this issue. Can you refer me out to a specialist who can?” |
Having a script can help keep you calm, cool, and collected while you fight back. But hopefully you can avoid that fight entirely by knowing your opponent—and how best to communicate with them.
In the many interviews I did with physicians for this book, I asked them all: What’s the best way for a patient to communicate their problem to you?
The responses were all over the place. And that’s probably something I should have anticipated. There’s no one perfect way to ask for help, because every patient, and every doctor, is different. And as patients, we aren’t just asking for help; we are educating someone about our body. So, it’s important that we explain ourselves fully and in a way that makes sense to our audience.
Everyone has their own way they like to learn. Some doctors are visual learners—so lift your shirt and show them your scars. Some are auditory learners—so use your words to describe the pain. Some absorb their patients’ stories better through the written word—so let your (revised, amended—see chapter 10) electronic medical records bring them up to speed. Some are tactile learners—so knock ’em around a little to give them a taste of your experience. (I’m joking, don’t do that. Assaulting a healthcare worker is a crime. More specifically, it’s a class D felony and will not get you the answers you need.)
My point is, you do not know, when you walk into that room, how the doctor will ask for you to present your case. You need to be prepared for all possibilities. Including the one where the person in front of you has no desire to learn anything about you at all.
Let’s start with visual learners. Like many women, I fear one day my nudes will leak on the internet. Unlike many women, my nudes are not artfully posed photos taken at a flattering angle. They’re part of a private photo album taken of my weirdest symptoms at their most point-blank angles, which I can reference with my doctors to illustrate past surgical wounds or rashes. These can be helpful in illustrating symptoms that are hard to describe with just words. When a doctor says, “I doubt it was that bad,” you can pull out the picture you took of your wound that absolutely was that bad. Keep these photos well guarded and, if digital, password-protected.
You may also find doctors who want you not to tell a story, but to show a timeline. I’ve met a lot of these physicians. They like dates, lengths of time, and patterns. It’s easier for them to absorb years of chronic illness when it’s laid out by the numbers. Don’t be afraid to draw up a literal timeline with dates and what happened during each event. It can help complex cases feel less intimidating, and show the progressive development of symptoms over time, as often happens when the body begins to break and sets off a domino effect throughout multiple organ systems.
The needs of doctors who want to read or listen to your story are the most difficult to navigate. Because you don’t ever really know what they want from you. The whole story front to back? The pain and severity of the illness? The ways in which the symptoms have changed your daily life and habits? Or do they just want the facts—bare bones, no frills?
When you verbalize your story, you also have to make choices about tone. Do you remain emotionless and pragmatic to avoid the risk of coming off as hysterical? Or will a lack of desperation in your voice cause them to think it’s not as bad as it is?
It’s enough to leave any patient tongue-tied from the fear of getting it wrong. It’s only your life on the line, after all.
So, before you go to your appointment, take some time to think about what it is you want to accomplish—and remember, be realistic. If you’re dealing with years of medical issues, you’re unlikely to get them all sorted out in this one appointment. Think of two or three realistic goals.
Let’s say you’re seeing a gynecologist for ongoing severe abdominal pain. Your goals might look something like this:
1.Set up an ultrasound or other diagnostic imaging to see if there’s a cyst or other issue causing your pain.
2.Receive new pain relief options since over-the-counter pain killers aren’t helping.
3.See if there’s another type of doctor you should be seeing for this problem, like an endocrinologist or a pain management doctor, and if so, get a referral.
To get your needs met in an appointment, you first have to demonstrate that a problem exists. Consider how you’re going to explain your problem. Even if this is something you have been experiencing for years, something that you’ve seen multiple specialists for, you’re better off with a brief summary. Too many times is the number of times I’ve been asked about my medical history and unloaded a flood of unmanageable information. No matter how complex your medical history is, try to summarize the bulk of it in less than a minute of explanation. Elaborate only when asked to clarify.
You’ll also want use before-and-after examples. It’s not enough to say, “This is not my normal. I’m so much worse than I was before.” You need to say, “Six months ago I was able to walk two blocks to the train station. Now I’m fatigued enough that I either have to take an Uber or cancel my plans” or “Before I started this treatment, my pain was severe enough that I needed to take pain killers every four hours. After the treatment, I’ve been able to get by with just one at night.” These comparisons can make all the difference when trying to communicate a change in your health.
There’s one last tool you’ll want to use when you come up against medical gaslighting in the exam room, and it’s recognizing and accepting when your efforts don’t matter. Have you ever tried to tell a story to someone engrossed in a particularly good book or on the final level of a video game? You could deliver the most passionate monologue imaginable, and they would still just sort of nod their head at you and offer a very noncommittal “uh-huh.”
If you come across a doctor who asks you what’s wrong but their eyes drift away as you start talking, or they stop you and say, “I’m not sure I’m the one who’d be able to help you with this,” pause and acknowledge that they may be right. This may be a room you’re going to walk out of without answers, without plans, and without care. It happens all the time. Even when you’ve waited six months for the appointment and carefully prepared for every scenario.
It’s important to put up a fight when the fight is worth having. It’s important to know how to communicate in a way that will win you arguments and help you find the relief you’re looking for. But it is equally important to know that when a door is slammed shut in your face, it may not be worth reopening. Unless the scenario is critical—you’re trying to achieve quality care in the only emergency room in the tri-county area, or this is the only specialist your insurance will let you see—then your best strategy may be to leave and find another door.
When you are not given the chance to speak, or your well-developed arguments are shut down—know that defeat is not having to leave a bad doctor. Defeat is choosing to not seek care elsewhere because of them.
The Do’s and Don’ts of Reacting to Medical Gaslighting
DO pause before you respond. Take a moment to remind yourself why you sought help and what your goal is for the encounter. Pausing can help you to ground yourself emotionally so you can say your piece with peace.
DO talk about the facts, not feelings, involved in your predicament. Talk about the impact on your quality of life to describe the severity of your symptoms.
DO remind yourself that no part of this is personal. This doctor doesn’t actually know you. Their lack of care is about them—their biases, their education, and their time—not about who you are as a person.
DON’T raise your voice, curse, or stoop to whatever level they sink down to in their efforts to gaslight you. NEVER harm, threaten, or physically intimidate a healthcare provider. This is not only illegal and reprehensible, but also gives them ammo for blaming your complaints on stress or emotional distress.
DON’T waste time arguing with a doctor after they’ve made it clear they won’t be taking your concerns seriously. If you’ve calmly and rationally expressed your concerns and still been shut down, it’s time to go.
DON’T gaslight yourself into thinking that just because one doctor gaslit you means the next doctor will, too. There are doctors who will care, who will listen, and who will walk this path with you the way you deserve.