"The Tests Were Normal" — Medical Gaslighting and What It Does to a Mind

Dr. Carmela Maxell: This one is personal, but I think many of you will find this relatable because I've had so many conversations with so many people recently about this topic, and it's time to talk about it. I want to start today with a sentence a doctor said to me. I was sitting on an exam table, paper crinkling under me the way it does, and I was describing my pain. And I had gotten good at describing it. The way you get good at anything you have to do over and over for years. And the doctor looked at my chart and looked at me and said You may want to have more children later. I think we should wait. Now you might be waiting for the rest of that sentence. Some engagement with what I just described. There wasn't a rest of that sentence. That was the clinical reasoning. Not my pain, not my life. A hypothetical future baby, one I had not asked for, outvoted the actual woman on the actual table. You see, I had asked for a hysterectomy for eight years. Eight years. And for eight years I was told in a dozen polite variations to wait. Meanwhile the test kept coming back normal. Mind you, I am absolutely blessed to have my daughter, whom I would not had if I had the surgery all those years ago. But the point was that my pain and process seemed to fall on deaf ears. Blood work, normal. Imaging, unremarkable. And I want you to understand what it does to a person to hear the word normal applied over and over to a body that is screaming. Because at some point, I was walking with a stick. I could barely function. I was raising my kids and holding down my job. And I've talked about this before on the show about surviving abuse. I was doing all of it inside a relationship that was hurting me too. So I was being told at home that my perceptions couldn't be trusted. And then I would go to a medical office to be told, with lab results as evidence, that my perceptions couldn't be trusted there either. The tests were normal. I wasn't. And it took nearly a decade for medicine to be curious about that gap. I suffered every single night crying, pleading to invisible doctors, trying to keep it together, researching the best heating pads, taking stock and Tylenol. I just wanted to know what was wrong with me. When someone finally listened, when I finally got the hysterectomy, I got a diagnosis to go with it. Adenomyosis. A condition I then had to educate myself about after the fact, learning how much damage it had been quietly doing all along. Here's the bitter joke of it. Adenomiosis often can't be definitively confirmed until a pathologist examines the uterus after it's removed. The proof I'd needed for eight years was only available on the other side of the surgery they weren't gonna give me. Today's episode is about medical gaslighting, what it is, why it happens, and most of all, what it does to a person's mind. Because this show is about mental health, wellness, and healing. And I'm here to tell you: being medically dismissed is not just a healthcare problem. It's a psychological injury. It changed how I trusted my own body, my own memory, my own sanity. And I know from your messages that many of you are living some version of this right now. So today, I'm not just your host. I'm testimony. And I'm also standing up for all of those who share their pains with me in desperation, as cries for help, and for those just needing a listening ear and a little support. You're listening to Rooted in Rising. I'm Dr. Carmella Maxwell. Let's get into it. Act one, what medical gaslighting is and isn't. Let's define what this is carefully, because this term has gone viral in the last few years, and when terms go viral, they get blurry. Medical gaslighting is what happens when a patient's symptoms, pain, or knowledge of their own body is dismissed, minimized, or reattributed, usually to psychology, stress, weight, hormones, or anxiety. In a way that leads the patient to doubt their own perception of their own body. Notice what the definition does not require. It doesn't require a villain. This is important because most of the clinicians who dismissed me were not cruel people. Some were kind. Gaslighting at scale doesn't need malice, it needs a system that has decided in advance. Whose reports are reliable and whose are suspect. A single doctor deciding your pain is anxiety is an error. A number of scheduled and unscheduled appointments across eight years converging on the same dismissal, with your chart carrying the story forward so each new clinician inherits the last one's skepticism, that's not an error anymore. That's an apparatus. And it doesn't fall on everyone equally. The research here is genuinely damning, and I'd be remiss if I didn't talk about children. We often assume children exaggerate, misunderstand, or simply don't have the words to explain what's happening inside their bodies. So they're told that they're being dramatic, that they'll grow out of it, that it's anxiety, that they're seeking attention. Many parents know exactly what I'm talking about. Walking into appointment after appointment, trying to convince someone that their child isn't just fine. Children are often the least powerful voice in the room, and when the adults responsible for protecting them aren't heard either, the lesson gets passed down early. Don't trust what your body is telling you if someone with more authority disagrees. Studies going back decades. There's a famous paper called The Girl Who Cried Pain by Diane Hoffman and Anita Tarzian that documents the women's pain is systematically taken less seriously than men's. Longer waits for pain relief, more referrals to psychology, more sedatives where men get analgesics. Black women face this compounded. Pain discounted further. Symptoms attributed elsewhere, and maternal outcomes that tell the story in mortality statistics. Conditions that live where this bias concentrates endometriosis, adenomyosis, autoimmune disease, chronic pain, long COVID, myalgic encephalomyelitis, chronic fatigue syndrome. Carry diagnostic delays measured not in months but in years. For endometriosis, studies routinely find average delays of seven to ten years. My eight years were not an outlier. My eight years were the average experience of a woman with a uterine condition asking medicine to believe her. Now let me tell you how it actually works in the room, because it's rarely dramatic. Nobody says, I don't believe you. It sounds like your labs look great. That's good news. And it is delivered as good news, which is the diabolical part. Because now your distress at the result reads as irrationality. Have you been under stress lately? Which It is a reasonable clinical question that becomes a trapdoor because I was under stress. I was parenting, working, and surviving abuse. Stress was real. But stress became the explanation that ended the investigation instead of a factor within it. Here's a sentence I want every clinician and every patient to hear. The presence of a psychological explanation is not evidence of the absence of a physical one. Anxious people get adenomyosis too. Traumatized people have tumors. The most stressed woman you know can still be bleeding for a reason. And then there are recommendations that, on their own, are often good medicine. Let's work on your sleep. Try losing some weight. Exercise more. Let's start therapy. Let's try this medication. And if that doesn't work, we'll try another one. None of those things are inherently wrong. In fact, better sleep, movement, nutrition, therapy, and the right medications can be life changing. I've recommended many of those things to my own clients. Many excellent physicians recommend them because they genuinely help. too people. The problem isn't that these interventions exist. The problem is when they become the entire conversation. When every appointment becomes another experiment, while the underlying question why is this happening slowly fades into the background. After a while you begin to feel less like a patient being understood and more like a protocol being tested. One medication after another, another diet, another supplement, another lifestyle adjustment, another few months to see what happens. You start wondering whether you're healing or simply participating in a series of educated guesses. And I want to be very careful here, because I don't want this episode to become an indictment of medicine or ph physicians. It isn't. Some of the most compassionate, curious people I have ever met wear white coats. There are doctors who listen deeply, who admit uncertainty, who partner with their patients, and who keep searching when the answer doesn't fit. Those clinicians save lives. Not just because of what they know, but because they stay curious. This episode is about what happens when curiosity disappears. When let's try this quietly replaces let's find out why. Let's give it a few more months. The deferral that has no memory. Every appointment, a fresh few months. Nobody adding them up. I was adding them up. And mine, the one I opened with. You may want more children later. I want to sit with this one, because it's its own category. That sentence wasn't disbelief of my symptoms exactly. It was something arguably stranger. My symptoms were weighed against a hypothetical person's hypothetical existence. And the hypothetical person won. My uterus was being managed as a public resource with a waiting list. And underneath it is an assumption so old it doesn't know it's an assumption. That a woman cannot be the final authority on whether she is done. That certainty itself in a woman is a symptom to be waited out. Eight years of wait. Let me tell you what was happening while we waited. When we come back, the part of this story that belongs on a mental health podcast, what dismissal does to a mind. Act two What it does to a mind? Here's the thing nobody charts. While medicine was waiting, I was being rewired. First injury The war between your body and your record. Every human being runs on a basic assumption. So basic you never think about it. That your perceptions are data. I hurt, therefore something hurts. Medical gaslighting attacks that assumption at the root. When the authority with the lab coat and the letterhead keeps telling you the machine says you're fine, you have two options. Medicine is wrong. Or you are. And we are trained, all of us, but women especially, and clinicians like me most of all, because I speak this systems language, to bet against ourselves. So you start doing the thing. You know the thing, if you've lived this, before every appointment, rehearsing your symptoms like a witness prepping for cross-examination. Keeping a pain journal, not for insight, but for evidence. Understating on purpose, because if you cry, they'll write anxious. And if you're articulate, they'll write well appearing. Editing your own suffering for credibility. And then leaving the appointment, having been managed anyway, sitting in the car, asking yourself the question that is the signature wound of the whole experience. Am I crazy? Or am I just making this up? Listen to me. A person who is making it up does not ask that question. That question is the symptom of gaslighting, not of madness. It means the dismissal got inside. The second injury for me it was stereo. I have to talk about this part carefully. And I share it because I know I'm not the only one. During those years I was in an abusive relationship. And what I understand now, what I could not fully see then, is that I was being gaslit in two rooms. At home, your feelings are too much. Your memory of what happened is wrong. You're the problem. At the clinic, your pain doesn't match the tests. Have you considered stress? Let's wait. Different buildings, same lesson. And the lesson, drummed in from both sides, was you are not a reliable witness to your own life. They compounded each other. The relationship made me easier to dismiss medically. I arrived already apologizing, already doubting, already fluent in minimizing my own experience, because minimizing was how I survived at home. And the medical dismissal fed the relationship because when medicine says nothing's wrong with you, the person who keeps telling you you're crazy gets a cosigner with a degree. There were years when the abuse and the illness were the two hands of one vice And every your tests are normal, turn the handle. And I kept it together. That's the part I need caregivers and the mothers and the eldest daughters listening to hear. I had children who needed me and a job that needed me, so I did what we do. I performed function walking stick in one hand, lunch boxes in the other. And here's the cruelest feedback loop in the whole story. My competence was used as evidence against my pain. She works. She parents. She presents well. How bad can it be? Nobody asked what the performance was costing. In fact, the better I coped, the less I was believed. The less I was believed, the more perfectly I had to cope. The third injury, what the mind does with all this clinically. Let me put my clinician hat on next to my patient hat, because this is where your stories and mind converge into a pattern with names. Medical trauma is real trauma. Repeated experiences of helplessness, threat, and betrayal in medical settings produce the same architecture we see in other trauma. Hypervigilance, scanning every clinician for the first flicker of dismissal, intrusion, replaying appointments for years, re arguing them in the shower, avoidance, and this is the dangerous one. The people who stop going entirely, who sit on new symptoms for months because the last decade taught them that seeking help is where the harm happens. Research on this population finds elevated anxiety, depression, and healthcare avoidance. People gaslit about one condition when they delay care for the next one. Dismissal doesn't just fail to treat the illness in front of it. It teaches you not to bring in the following illness. There's the identity piece. Chronic illness without diagnosis is grief without a death certificate. You're losing function, losing the life you planned, and you're not even allowed the sick role because officially nothing is wrong. People mourned around me for losses medicine said weren't happening. And there's a piece I'll name from our last episode about institutional betrayal. Medicine is an institution we're supposed to depend on. That's the deal. That's why we handed our bodies. Jennifer Freud's research shows that when a trusted institution fails or blames the people depending on it, the harm compounds beyond the original injury. That's why medical gaslighting hurts differently than a stranger's disbelief. You came to the healers. You did everything right. The betrayal is low bearing. And then the diagnosis, which deserves its own honesty. People imagine the diagnosis day as pure vindication. And there was vindication. Adenomyosis, a real condition. Tissue growing into the muscle wall of my uterus. A documented cause for everything. There was a relief so big I don't have adequate words. It had a name. I had never been crazy. But I want to tell the truth about the other feelings. Because someone listening is about to get their name day and nobody prepares you. There was rage. Because the answer had been sitting inside the whole time. And the definitive proof only became visible after the surgery I'd spent eight years being denied. There was grief for the woman who spent those years doubting herself. I think of her. Managing everything with a stick and a smile. And I want to go back and testify for her. And there was a strange loneliness because vindication came with no apology attached. No one from those eight years called. The system that says wait never circles back when the weight turns out to have been the harm. I had to become my own educator, reading the research, learning what adenomyosis had been doing to my body all along, and my own witness, and eventually my own apology. Medical gaslighting is a double theft. First it takes your health. And then it takes your certainty that you ever knew anything about your health at all. And healing means stealing the second thing back. Act three Stealing Your Certainty Back So what do we do? Those of us still in the eight years or newly out of them, or walking someone we love through them. three moves in the exam room, in your own head, and in your community. In the exam room, become a difficult historian, not a good patient. The system rewards compliant patients and responds to documented ones. So, bring a record, not a recollection. Dates, symptom frequency, functional impact. Not I'm in a lot of pain, but I missed eleven days of work this quarter. I use a walking stick on bad days. I flooded through protection at these intervals. Function is the language dismissal has the hardest time reattributing to anxiety. Pain can be argued with. A walking stick is data. Ask the question that creates accountability. When you're told it's stress or you're told to wait, ask calmly and in these words. I hear you. Can you document in my chart that I reported these symptoms and requested further investigation and note your clinical reasoning for declining? You're not being aggressive. You're asking the system to keep the same records about itself that it keeps about you. It's remarkable how often the plan changes when the reasoning has to be written down. Ask the differential question. What else could this be? And how would we rule it out? Because your tests are normal is not a diagnosis. It's the absence of one. And normal results on the tests that were run say nothing about the tests that weren't. And know your rights of exit. Second opinions, new providers, requesting your full records. Which you are entitled to. Leaving a dismissive provider is not rudeness. It's triage. One more, specifically for my listeners fighting the fight I fought. The you might want more children fight, you are allowed to say I am the only person qualified to answer that question, and I've answered it. You don't owe medicine a maybe. Your certainty is not a symptom. In your own head, repatriating your perception. The exam room tactics matter, but this is a mental health show. So here's the deeper work. Undoing what the dismissal installed. Relearn interoception as a skill, not a threat. Years of being told your signals are wrong leaves you either ignoring your body entirely or monitoring it in terror, usually alternating. The repair is boring and gentle. Regular low stakes practice of noticing sensation without immediately prosecuting it. Somatic therapy helps here. So does trauma informed yoga. So does simply narrating sensation in a journal with no case attached. The goal is a body that's a home again, not a courtroom. Separate the two questions that gaslighting fused is something wrong with my body and am I a credible person were never supposed to be the same question. Dismissal welded them, so every normal test read as a character verdict. Part of healing is unwelding them. A normal result can be true and your suffering can be real. And you can be entirely sane all at once. Because the third possibility the system never offered was the tests we have aren't measuring the thing you have. Say that sentence to yourself as many times as you need. For eight years, that sentence was the truth about me. And grieve properly with witnesses. The undiagnosed years are a real loss. The energy, the opportunities, the version of you that didn't have to fight. If you used my Letters Never Sent app or a journal, there are two letters in this episode for you, and I'll give you one at the close. But the other one, write to yourself in the waiting room, however many years back, tell yourself what you know now, that you were right the whole time, that the vindication is coming and it will have a name on it. You held on without any evidence except your own testimony. You deserve to hear from someone who believes you. In community, because self advocacy shouldn't be a solo sport. Bring a witness to appointments. Dismissal behaves differently when observed. Find your condition's community. For me, patient communities knew things about adenomiosis that eight years of appointments never mentioned. And the research consistently finds that peer support cuts through the isolation of contested illness like nothing else. And if you're the support person, if you love someone in their eight years, your job is the one I described last episode. Be unstartled. Don't audit their symptoms. You are the one mirror the system doesn't own. Being believed by one person is Consistently is a clinical intervention. I mean that. And to the clinicians listening, I know you're there, and I know most of you went into this to heal people. One practice. When the tests are normal and the patient is still suffering, say this sentence out loud. The tests being normal doesn't mean nothing is wrong. It means we haven't found it yet. That sentence costs you nothing. It would have saved me years of my sanity. Normal is a description of the test. It is not a description of the patient. The second letter. I said there were two letters in this episode. Here's the second one. It's mine. A while after my surgery, after the pathology came back, after adenomyosis was finally written somewhere official, I found myself composing something in my head. Not to the doctors, to my walking stick. Because that stick knew. Before any chart did. It was the only piece of the medical world that responded to my actual body instead of my test results. It never asked if I considered stress. It just held the weight I couldn't. And I realized, writing it, that for eight years I'd had exactly two consistent witnesses, a metal stick and me. And I'd spent those years apologizing for both of us. I'm done apologizing. So here's what I want to leave you with. If you're in your eight years right now, if you're rehearsing symptoms in the car, if you're understanding on purpose, if you've asked the dashboard, am I crazy? on the drive home, I'm reaching through this microphone to tell you what no one told me. You are the primary source. Everything else, the labs, the imaging, the chart is secondary literature. Useful, imperfect, incomplete. But you are the text itself. And no normal result anywhere in the world outranks the text. Do me a favor, do this little exercise this week. Something validating and compelling to jumpstart this healing process that your body and mind are crying for. Write a letter to your body. The one you've been fighting with, doubting, prosecuting, apologizing for. Not a truce letter. You don't have to be ready for that. Just an acknowledgement. You were telling the truth. I'm sorry I was taught to doubt you. I'm learning to listen again. You will never send it. Your body doesn't have an address. But it's listening. It always was. It was the only one who never stopped testifying. If today's conversation resonated with you, I hope you'll help us keep it going. Follow Rooted in Rising wherever you listen to podcasts. Subscribe so you never miss a new episode every Tuesday. And if this episode meant something to you, please consider leaving a rating and review. It may seem like a small gesture, but it helps more people find these conversations when they need them the most. If someone came to mind while you were listening, Someone who's been told the tests were normal, someone who's been made to question their own reality, or someone who's simply waiting to be heard. Please share this episode with them. Sometimes believing someone is the first step towards healing. Resources for medical self advocacy and patient rights are in the show notes. If today's episode stirred up more than it settled, especially around the abuse I mentioned, please reach for support. Those resources are there too. You can also connect with me at http colon slash slash carmelaxell.com, where you'll find my podcast, my writing resources, and more information about my work. And if this episode spoke to you, I'd love to hear your story. You're not alone. And your voice matters here. I'm Dr. Carmela Maxwell. This has been Rooted in Rising, where your testimony outranks the chart. Remember to stay rooted in who you are. Keep rising into who you're becoming. Take care.