Despite My Determination To Hold Onto My Dignity, I Cried
"The Invisible Kingdom" calls attention to the medical gaslighting of chronic pain patients
I tightened my fingers around the clipboard, blinking as the letters and numbers on the page moved further away. I had never believed stories of tunnel vision, but fuzzy shadows invaded my peripheral vision. As my shoulders curved inward—my natural reaction when spasms wracked my abdomen—the volume in the room spiked.
“Andria!” My assistant grabbed my arm, pulling me upright, and I blinked, confused. “Are you okay?”
I winced as my intestinal organs spasmed.
She frowned. “I’m calling your mom, and you’re going to the ER.” She guided me to a chair, pulling the clipboard from my hands.
“No,” I said. “They won’t help. It’ll be a repeat of last time.”
“You almost passed out. You’re going to the hospital.”
My coworkers didn’t know I’d already endured a similar experience—minus the loss of consciousness. They only saw what was happening at the moment. I couldn’t explain that after the urgency of a triage nurse escorting me to a bed, hooking me to an ECG for monitoring, and placing an IVC, I would meet a doctor. And then I’d hear those dreaded words spoken in a reassuring tone, “We’ll figure out what’s wrong.”
A false promise of hope.
I’d already braved the ER for the indescribable pain shredding my internal organs four weeks prior, curled on a hospital bed, my arms cupped protectively around my abdomen. I hadn’t passed out, but I couldn’t find a comfortable position to sit or stand and lost sleep tossing and turning. I stared in disbelief at the cheerful ER doctor. He wore a bright smile as he declared a diagnosis of “bloating” and “nothing much to worry about.” The words did nothing to ease what felt like iron claws tearing through my intestines. He squeezed my shoulder, his gaze optimistic. “Schedule a recheck with your gastroenterologist and chat about changing your diet.”
I wanted to protest, my insistence built upon years of intimate knowledge of my body and its pain signals. But I swallowed my words and thanked him, hobbling out of the ER. After battling migraines, fibromyalgia, IBS, and a host of reproductive organ problems, I understood the routine.
The medical community refuses to understand what they can’t see. Pain—invisible, insidious, and intractable—leaves no traces. It doesn’t surface on lab results. And when medicine fails to produce a test or yield a convenient, potentially misleading answer, doctors shrug their shoulders. With backlogs of patients waiting for attention, confusing cases get passed to someone else—assuming they aren’t dismissed outright.
Listening to this list of anticipated tests, I balanced between hope and despair.
When I saw the cover of Meghan O’Rourke’s The Invisible Kingdom: Reimagining Chronic Illness four years later, I sought the promise of a different world. The title alone implied understanding, suggesting hope for a new future. Was there a possibility outside of the misunderstanding, misdiagnosis, and misery my malfunctioning body had taught me to expect?
O’Rourke’s words in the introduction dangled a carrot of optimism I’d believed impossible. “…above all, I wanted recognition of the reality of my experience, a sense that others saw it, not least because human ingenuity might then be applied to the disease that had undone me, so that others might in the future suffer less than I did.”
Throughout the book, O’Rourke documents the years—years!—she spent searching for answers to nebulous and incredibly familiar symptoms: fatigue, brain fog, and electric pulses of pain throughout her body that arrived and departed without warning. Her narrative resembles that of countless chronic illness patients. She brings to light the “often marginalized, contested, or even unrecognized” within the population: people struggling with autoimmune diseases, centralized pain disorders, chronic fatigue syndromes, and long COVID—the newest arrival to the group. Often lost in the compartmentalized boxes of modern medicine, The Invisible Kingdom offers a window into chronic illness and illuminates the reality of medical gaslighting.
“Medical gaslighting” arose as a term from the 1938 play Gaslight by Patrick Hamilton. In the production, an abusive husband attempts to send his wife over the edge by making false accusations, denying previous remarks in their conversations, and manipulating the gaslights in the house. Doctors don’t participate in such underhanded machinations, but their habits of dismissing unspecific symptoms or assigning inappropriate diagnoses often drive patients mad—however unintentional their tendencies. Doctors diagnose as many as 1 in 7 patients incorrectly, and women and people of color make up the majority of the victims.
As O’Rourke details, Western medicine acknowledges three categories of illness: those with a single identifying cause, diagnoses accepted as genuine but exacerbated by stress (chronic illnesses), and those residing “in your head.” Only the first category has definitive testing, easy to assess and document. The other two leave physicians scrambling, usually at the expense of the patient. Vague symptoms and ambiguous test results make doctors sweat. And in the medical profession, a diagnosis of uncertainty is unacceptable—something O’Rourke is fair enough to discuss. Unfortunately, the need to fill in a blank on a record leads to the mistakes and dismissals that plague so many chronic pain patients.
The definition of gaslighting didn’t exist when the first ER doctor sent me away with my diagnosis of bloating. I never called my gastroenterologist—who had already decided my pain symptoms resulted from a lack of sleep—nor did I attempt to adjust the foods I ate. Like O’Rourke, I spent endless hours on online support groups, searching for recommendations and support. My free time devolved into staring at helpful posts on supplements (turmeric, calcium, fish oils) and anti-inflammatory recipes while I pressed my fist tighter and tighter into my abdomen to attempt to relieve the pain. Resigned to a diet of saltine crackers, baby carrots, and water, my calorie count dropped into the negligible range. The twisting and knotting dance inside my body never abated, interfering with my ability to focus, work, and even walk.
Staring into the familiar cartoon faces on the CT machine, I reviewed the list of every failed “remedy” as the rush of contrast spread heat through my veins. Closing my eyes, I silently willed the blue dye to collect somewhere, to cluster onto something in my abdomen.
“You’re a pro at this,” the imaging technician told me, helping me slide over to the gurney. “What’s this—your fourth scan this year?”
“I’ve lost track,” I mumbled.
“I need a disease detective,” O’Rourke writes. “I want a chip implanted in my wrist that could give a readout of the problems in my body.” Struggling after an initial diagnosis of autoimmune thyroiditis, the adjustment of her medications offered no end to her symptoms—a common issue for chronic pain patients. So she moved from traditional Western medicine to alternative practitioners. And then onto integrative medicine and even experimental therapy. I winced through her description of the impossibly high stacks of lab results, endless rounds of imaging, and rows upon rows of supplements and prescription bottles. Her frustration with coordinating care between countless specialists rings true for every chronic illness patient, desperately running from office to office. Every word echoed my desperate fight for diagnoses as doctors sent me chasing impossibilities, mystified by lab results a fraction above or below normal values.
Unfortunately, O’Rourke also touches on the distinct reality of medical gaslighting in women patients. The common assumption is that when there is nothing physically wrong with the female sex, the problem lies with her brain. Anxiety and depression appear as diagnoses, despite symptoms consistent with heart disease, autoimmune disease, and even cancer. Meanwhile, these patients receive recommendations to lose weight, improve self-care, or seek professional counseling, delaying appropriate medical treatment.
It’s a theme continued in Haider Warraich’s The Song of Our Scars: The Untold Story of Pain. He presents the case of Lara Birk, a teenager who collapsed while playing soccer. Despite horrific pain, physicians recommended her parents refer her to a psychiatrist. It took days for someone to recognize the truth: a rare case of compartment syndrome. Delaying her diagnosis could have meant the loss of her leg. Young, female, and experiencing pain beyond limits anyone expected, she was initially labeled hysterical. Their constant denial preyed upon her emotions, leading her to doubt the agony, questioning if she might have conjured the insufferable pain. It’s an emotional and psychological dance many chronic illness patients engage in when doctors fail to find the source of their pain.
When the second ER doctor stepped into my room to report my test results, I recognized his expression. The friendly aura of optimistic hope was gone, replaced with stern authority. Towering over me, he crossed his arms. “Everything looks fine. I think this is nothing more than an anxiety attack.” He leaned closer, bending to meet my gaze where I lay doubled over on the bed, sweat beading on my forehead. “This is your second visit to the ER in a month. I want you to schedule an appointment with a psychiatrist and start counseling.”
I cried. Despite my determination to hold onto my dignity, I cried. And the messy sobs only reinforced the diagnosis in the doctor’s eyes.
The following day, unable to stand or draw a proper breath, I called my OB/GYN. The call felt desperate and misplaced. My OB/GYN had removed my uterus and fallopian tubes not six months prior in a partial hysterectomy. I appreciated his frank discussions over my options for handling the adenomyosis, internal and external fibroid tumors, and endometriosis plaguing my body. But I still harbored resentment over the indignity of losing my reproductive capability at thirty-nine years old. Balancing my need to speak with a doctor who listened with lingering emotional grief left me conflicted—a common quandary faced by chronic pain patients. But the office scheduled an immediate appointment, alarmed at my description of the pain’s intensity.
“Why did you wait so long?” the receptionist asked me.
Warraich, a physician and chronic pain patient himself, makes a poetic distinction between acute and chronic pain. “When pain arrives and refuses to leave, suffering is as inevitable as death itself.” He documents the evolution of pain’s influence on medicine, acknowledging the chronic pain patient and granting them visibility. The lack of quantifiable symptoms allows these patients to slide through cracks, continuing to suffer. You feel his regret in the details of Anne Marie Gaudon, a woman with signs of a urinary tract infection, minus bacteria in her urine samples. Rather than offering treatment to relieve her discomfort, multiple doctors continue to hunt for an “official” diagnosis. Eventually, a physician discovers she suffers from interstitial cystitis and bladder pain syndrome—conditions defined by chronic pain. Clearly suffering, she had to wait for someone to take her symptoms seriously before receiving treatment.
When my OB/GYN informed me the emergency ultrasound showed nothing, I feared a repeat recommendation for counseling. Instead, he took a seat that brought his face level with mine and clasped his hands together. “Something’s wrong; I see that much on your face. Let’s get you on the books for exploratory surgery. I can’t promise I’ll find anything, but at least we can say we tried.”
O’Rourke documents fifteen years of symptoms, tests, and treatments before landing on diagnoses of chronic Lyme disease, autoimmune thyroiditis, postural orthostatic tachycardia syndrome (POTS), and hypermobile Ehlers-Danlos syndrome. Fifteen years of doctors noticing abnormalities and dismissing them as insufficiently abnormal. Fifteen years of physicians recommending therapies that resulted in worsening symptoms or improvements that lasted no longer than a few months. This cyclical pattern is typical of the chronic illness patient, their body moving at the whim of the season, changing weather systems, or position of the stars. Her journey parallels that of many with vague symptoms—especially pain.
I woke from anesthesia groggy, disoriented, and braced for the worst. It took me ten long minutes to recognize my abdomen’s lack of pain in the lingering haze. After three months of the shredding sensation a constant part of my life, the sudden absence stunned me.
“Endometriosis,” my doctor said. I looked up. He wore a sad smile as he took the seat beside my bed. “A nasty pocket wrapped around and behind your intestines.”
I frowned, attempting to gather sedation-scattered thoughts. “You removed my uterus, though.”
He nodded. “You can have endometriosis without a uterus. I missed this patch during your last surgery. It was so entrenched I needed to dig it out.” He reached out and placed a hand on my arm. “I’m not surprised you were in so much pain.”
Endometriosis doesn’t appear on CT scans. It’s rarely detected via ultrasound or even MRI. The most accurate detection method is laparoscopy—a surgical procedure doctors are reluctant to recommend. This leaves 2-10% of women with chronic, cyclic pain that evades detection by conventional methods.
But for anyone with a history of the condition? It should appear on a differential list.
Warraich defines chronic pain for anyone with an invisible illness. “…chronic pain is most often akin to an emotion we feel in a part of our body, an overlearned traumatic memory that keeps ricocheting around in our brains, often long after the injury it rehearses has fully healed.” I walked from the outpatient center, spine straight. Yet the sensation of an invisible enemy in my abdomen lingered. Did more endometriosis lie in wait, biding its time to announce a fresh torment? More importantly, would I need to face new battles down the road if the agony returned? My psychological fear of medical rejection and misunderstanding ran deep, scarring my brain alongside the nerve impulses orchestrating the pain signals throughout my body.
O’Rourke and Wairrach make impassioned pleas for better coordination between chronic illness patients and their physicians. I take hope in their reminders that there’s no better expert on the state of my body—and mind—than myself. And I hear the promise in O’Rourke’s words: “This is what it is like. Please listen, so that one day you might be able to help.“