A 13-Year Diagnostic Odyssey: How Medical Gaslighting Fails Women with Chronic Illness
Last spring, as I waited nervously in a medical facility to meet a new family doctor, I found myself scrolling through Facebook in a futile attempt to calm the anxiety surging within me. I am intimately familiar with the panic that electrifies my body moments before encountering a new physician. Yet, no matter how many times I experience it, the dread never subsides.
The Invisible Symptoms and the Search for Validation
For thirteen long years, beginning when I was just twenty-one, I bounced from doctor to doctor—from internists to specialists to diagnostic centers and back again—in a desperate search for answers. My legs would weaken when I stood, and walking would drain my strength entirely. Muscles twitched unpredictably beneath my skin, while pain radiated down my legs with the intensity of an electrical current. The profound physical fatigue that shattered my vitality was as real as the tuning fork physicians used during neurological examinations. However, because my symptoms were invisible, my words became my only hope for validation.
According to The New York Times, research indicates that compared to men, women face significantly longer waits for diagnoses of conditions like cancer and heart disease. They receive less aggressive treatment for traumatic brain injuries and are less frequently offered pain medications. The publication notes that misdiagnoses in women often stem from a historical lack of scientific knowledge about the female body. Furthermore, doctors are more likely to attribute women's health issues to mental health concerns, weight, or perceived lack of self-care. This was precisely my experience.
Years of Dismissal and Trauma
"Go home and have a martini," was the absurd advice from my first doctor in 2005, after I described how walking had become a burden and my fear matched the weight of my symptoms. I had hoped for understanding, but instead received that ludicrous six-word prescription. Beyond some basic lab work, he offered no further testing, medication, or referrals—just a hypothetical script for a cocktail.
The next physician insisted on a breast exam after I explained the weakness that turned my legs to jelly. Desperate for help, I felt vulnerable and submitted to his will. I lay frozen as he touched my chest, a moment that still replays in my mind two decades later, an indelible mark of violation.
When I traveled 1,100 miles to a world-renowned diagnostic facility, they repeated lab tests I had already undergone. They diagnosed me with non-inflammatory musculoskeletal pain and recommended an exercise and behavior modification program to mentally alter my reaction to symptoms. I felt like a failure when biofeedback could not calm the inflammation surging in my nervous system. Years later, I discovered "depressive-like symptoms" listed as a diagnosis from that visit. I realized they had mistaken the fear and worry stemming from my unknown illness for the illness itself.
"Why can't you show me?" another doctor demanded of the muscle twitches that flickered sporadically throughout my body. He wanted a demonstration, but these involuntary fasciculations erupt and cease on their own volition; they cannot be summoned on command.
The Systemic Failure and a Glimmer of Hope
Early in my journey, an infectious disease physician told me to "Leave here and stop seeing doctors," as if my desire to live was clogging the medical system. Later, a neurologist insisted, "You need to stop searching," suggesting I was less deserving of a diagnosis than other patients. He stated, "Not everyone receives a diagnosis," implying I should simply live with the disease raging inside me, untreated and unexplained. Thankfully, I did not listen.
Doctors frequently recommended exercise, suggesting physical therapy or declaring I was "deconditioned." Yet, I had gone to bed one summer night in 2005 with a fully functional body and awakened the next morning with foreign, debilitating symptoms. Deconditioning develops over time, not in the darkness of a single night.
So, I pushed forward, year after year, earning a graduate degree, getting married, and having children. By 2016, my weakness was so severe I climbed stairs from a sitting position, struggled to press the car pedal, and felt unable to be the mother my children deserved. Above all else, I needed a diagnosis. In 2017, I finally received it.
The Diagnosis and Its Aftermath
A lumbar puncture provided the answer. My brain MRI from 2005 had shown areas of demyelination consistent with multiple sclerosis, but the confirming lumbar puncture was not ordered until twelve years later. Those darkened areas on my MRI were dismissed as "non-specific" and likely from migraines. As a migraine sufferer, I trusted that assessment.
Those two letters—MS—were daunting, yet relief lifted layers of suffering like a morning fog. I began treatment, and my search was over. I believed I could leave the past behind, and much of it is behind me. However, the trauma from being repeatedly dismissed follows me, a stark reminder of how I was doubted, questioned, and ignored for over a decade.
The Cycle Continues: Trauma in the Exam Room
"You can come back now," the nurse said, interrupting the toxic memories streaming through my mind. In the exam room, I felt jittery and weak; my MS symptoms worsen under stress. This was more than simple appointment anxiety. It was over a decade of trauma built to unbreakable measures—thirteen years of neglect replaying in my mind. It was every time I had cried alone on the bathroom floor after being questioned, dismissed, and ignored, echoing within me once more. The empty feeling of hopelessness returns in an instant.
I live with multiple chronic health conditions, making ongoing medical support inevitable. My trust in healthcare providers is flawed from years of believing my best interest was paramount when it was not. When meeting a new doctor, I prepare for resistance—and often still encounter it. I review questions beforehand to sound educated and believable. I stifle my emotions so doctors do not assume my symptoms stem from mental health struggles. I present a numbed version of myself because I have learned that is more widely accepted. Then, I pray they listen and respond with empathy and concern.
Every time I enter a doctor's office, I revert to that scared young woman struggling to walk, begging for help, yet disappearing into the healthcare system without being heard. The cycle never ends because the damage—and my journey itself—is carved into my being with permanence. It also persists because our healthcare system has not changed how it views women. Our words continue to be met with doubt.
A New Beginning and Ongoing Struggles
The neurologist who diagnosed me brought me back to life. When he announced his retirement, it felt as though the ground crumbled beneath me. "I'll have to start all over again," I cried to my husband. "No one else believed me," I sobbed through tears.
By that point, the infusion treatment I had been receiving for years had improved my strength, allowing me to return to many activities. I could visit my sons' classrooms for holiday parties, meander through museums with my family, and take short walks in the mountains. Biking had returned to my life, and walking on the beach was possible once again.
I feared losing everything I had fought so hard to achieve. I envisioned the debilitated young mother I once was, crawling up the stairs devoid of energy. I worried those darkest days would return.
Confronting the System Again
When I visited the new neurologist's office, the resident began questioning me the moment he entered the room. "Could you explain your symptoms a little further?" he asked, his face lowered into my lengthy chart. Initially, I complied, the inferior, helpless patient within me resurfacing. But as questions from long ago were thrown at me like bullets, I could no longer stifle the tears. "It took me 13 years to get this diagnosis. The medication is helping me. Why are you making me start from the beginning again?"
"We need to make sure you have the right diagnosis," he responded, as if my personal account held no value. With those words, he confirmed my fear definitively: I was starting at ground zero. I was a female patient. I was not to be trusted. "I'm done telling my story until the doctor comes in," I declared.
I had been broken by the trauma, but I had also gained a voice. That day, I met a neurologist as understanding, intelligent, and open-minded as the one who diagnosed me. But I did not reach her without resistance.
The Lasting Impact and a Call for Change
Even now, eight years after my diagnosis—and twenty-one years after my initial symptoms—I continue to be haunted by the trauma many women face in healthcare settings. Doctors often still consider my words an exaggeration of the truth, despite the credibility I should have earned with my diagnosis. This trauma is why I stayed with a less-than-ideal family doctor for years instead of seeking a new one, as I did last spring. It is the reason anxiety paralyzes me when I sit on the exam table waiting to be seen.
I apologize to doctors if I reach out on the patient portal. During appointments, I ask only the most dire questions, and if I feel I have used my allotted time, remaining concerns are set aside. I have learned to anticipate doctors' reactions.
In the moments before meeting a new doctor, scenes from previous appointments replay in my mind, eliciting the same emotional response they did initially. When a new symptom arises, I wait—because mentioning an ailment that might disappear in days or weeks could diminish my future credibility. I am always walking on eggshells.
Somewhere between 24 million and 50 million Americans have an autoimmune disease, with as many as four out of five being women. Autoimmune diseases often present with non-specific, overlapping symptoms, making them particularly challenging to diagnose. Women are not only more likely to be struck by these disabling conditions, but we are living through a medical gaslighting emergency that makes an already difficult diagnosis even more elusive.
As women, we deserve to be trusted leaders of our own medical care. Once we find ourselves buried beneath the rubble of neglect, it can take a lifetime to climb out. Slowly, I am starting to see the light again.
