Last spring, as I sat in the waiting room of a medical facility, before meeting a new family doctor, I anxiously scrolled through Facebook, trying to calm my raging nerves. I’m no stranger to the moments of panic before meeting a new doctor. But it never gets easier.
Starting at age 21, I spent 13 years bouncing from doctor to doctor—from internist to specialist to diagnostic center and back again—in search of a diagnosis. My legs feel weak when I stand, and I have no strength when I walk. The muscles under my skin twitched and pain shot up my legs like electricity. The physical fatigue that destroyed my strength was as real as the tuning fork the doctor used during a neurological exam. But it is invisible, so my words are my only hope.
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According to the New York Times, “Studies show that compared with men, women take longer to be diagnosed with cancer and heart disease, are treated less aggressively for traumatic brain injuries, and are less likely to get pain medication.” The authors note that misdiagnoses in women often stem from scientists knowing far less about women’s bodies than men’s, but doctors are also more likely to blame women’s health problems on mental health, weight, or a lack of self-care, which is exactly what happened to me.
“Go home and have a martini,” my first doctor advised me in 2005. I just revealed how walking can become onerous and that the fear of what is going on inside can be as bad as the symptoms themselves. I look forward to being heard, recognized and understood. Instead, I was told those six ridiculous words. But apart from some basic lab work, he offered nothing. No further testing. No medicine. No recommendations; this is just a cosmopolitan hypothetical script.
After I described the weakness that caused my legs to turn to jelly, the next doctor insisted a breast exam was necessary. I desperately needed help, but I was fragile and had no choice but to follow the doctor’s wishes. I lay there frozen as he ran his savage hands over my chest. Twenty years later, that moment still replays in my mind and I’m not sure I can ever erase it.
When I flew 1,100 miles to a world-renowned diagnostic facility, they repeated the lab work I had already done, told me I had non-inflammatory musculoskeletal pain, and recommended an exercise and behavior modification program to mentally change the way I responded to my symptoms. When biofeedback failed to calm the raging inflammation in my nervous system, I felt like a failure. Years later, I read that “depression-like symptoms” was listed as a diagnosis from that visit, and I began to understand that they were treating the fear and worry about the unknowns of the disease as the disease itself.
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“Why can’t you show me?” Another doctor asked me to twitch all the muscles in my body from time to time. He asked me to prove my words by demonstration. But these involuntary muscle tremors will break out on their own and stop as the muscles move. Seducing them was not an option.
Early in my search, I poured my heart out to an infectious disease doctor, hoping for sympathy and concern. Instead, she demanded to “get out of here and stop seeing the doctor,” as if I was clogging up the medical system with my desire to live. Later, one of the many neurologists I saw insisted, “You need to stop searching,” as if I was less worthy of a diagnosis than the patient in front of me. He said, “Not everyone gets a diagnosis,” but those words suggested that I should move beyond this disease raging inside me and continue living without knowing what it was or treating it, as if I Can.
Luckily I didn’t listen.
2025, the author and her husband. Contributed by Lindsay Karp
Often, these doctors will recommend exercise. “Physical therapy may be helpful,” they suggest. “You are not in good health,” they would declare. But one night in the summer of 2005, I went to bed functioning normally and woke up the next morning with foreign body symptoms. Dysregulation occurs over time, not in one night of darkness.
So I moved forward day after day—year after year—getting a graduate degree, getting married, having kids, and experiencing it all. By 2016, I was so weak that I could only sit and climb stairs, try to hold on to the car pedals, and was unable to be the mother I should be to my children. What I needed most was a diagnosis, and in 2017, I finally got one.
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A lumbar puncture gave me the answer. In 2005, my brain MRI showed areas of demyelination consistent with MS, but a lumbar puncture (used to confirm suspected MS cases) was not performed until 2017.
“They’re nonspecific,” I was told about these dark areas on the MRI. “Probably a migraine,” they claimed. As a migraine sufferer, I trust them.
The two letters—MS—were daunting, but the relief lifted away the layers of pain like morning mist. I started therapy and my search was complete. I thought I could put it all behind me—and mostly I did—but the trauma of being fired stayed with me over and over again, a stark reminder of how I had been doubted, questioned, and ignored for more than a decade.
“You can come back now,” the nurse said, her voice interrupting the toxic memories flowing through my mind. When I arrived at the exam room, I was nervous and weak; my MS symptoms worsened under the stress. But it’s more than simple appointment anxiety. This is the trauma of more than a decade of impenetrable measures. These 13 years of neglect replayed themselves in my mind. It echoes inside me again every time I cry alone on the bathroom floor—my escape—after being questioned, dismissed, and ignored.
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The feeling of emptiness and despair came back instantly.
I live with multiple chronic illnesses, so ongoing medical support is inevitable. My trust in health care providers is flawed because for years I believed my best interests were paramount, but that was not the case. I was prepared to encounter resistance when I met a new doctor—and I still often am. I review questions beforehand to make sure I sound educated and credible. I tried my best to suppress my emotions so doctors wouldn’t think the symptoms stemmed from a mental health issue. I reduce my speech to a numb version of myself because I know that’s what’s more widely accepted – and then I pray that they listen and find enough compassion to respond with empathy and concern.
Every time I walked into a doctor’s office, I was brought back to that scared young woman, struggling to walk, begging for help, only to disappear into the depths of the health care system, unheard.
This cycle will never end, because the damage—and my journey itself—is permanently etched on my body, but also because our health care system has not changed its view of women. Our words continue to be questioned.
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The neurologist who diagnosed me brought me back to life. When he announced his retirement, I felt the ground beneath me collapse. “I have to start over,” I cried to my husband that night. “No one believed me,” I sobbed through tears.
By then, the infusions I had received over several years had built up my strength, allowing me to resume many activities. I can go to my son’s classroom for a holiday party, walk through a museum with my family, or even take a short walk in the mountains. Cycling is back in my life and I can walk on the sand at the beach again.
I was worried that I would lose everything that it took me so long to gain.
I pictured the frail young mother I once was, climbing the stairs with no strength. I fear the darkest days of my life will resurface.
When I visited a new neurologist’s office, the first resident I saw started asking me questions as soon as he entered the room.
“Can you explain your symptoms further?” he asked, his face lowered to my long chart. At first, I did what I was told. The low self-esteem, helpless patient inside me resurfaced again.
But questions from long ago hit me like bullets and I could no longer hold back the tears. “It took me 13 years to get this diagnosis. Medications helped me. Why would you make me start from scratch?”
“We need to make sure you get the correct diagnosis,” he responded, as if my personal account had no value. His words clearly confirmed my fears: I was starting from scratch. I am a female patient. I’m not trustworthy.
“My story was finished before the doctor came in.”
I was broken by the trauma, but I was also given a voice. That day, I met a neurologist who was as understanding, smart, and open-minded as the man who diagnosed me. But I didn’t approach her without resistance.
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Even now, 8 years after my diagnosis and 21 years after my initial symptoms, I am still haunted by the trauma that many women face in healthcare settings. Even though my diagnosis was supposed to be credible, doctors still often thought I was exaggerating. That’s why I’ve been seeing a less-than-ideal family doctor for years instead of immediately looking for a new one like I did last spring. This trauma is why anxiety paralyzed me as I sat on the exam table waiting to be seen.
If I contact the patient portal I will apologize to the doctor. During an appointment, I only ask the toughest questions, and if I feel like I’ve used up the allotted time, the rest of the questions are pushed aside. I learned to predict the doctor’s reaction.
In the moments before meeting the new doctor, the scene from the previous appointment replayed in my mind, triggering the same emotional response as the original. I wait when new symptoms appear because mentioning a disease that may disappear within days or weeks diminishes my future credibility.
I’m always walking on eggshells.
Approximately 24 million to 50 million Americans have autoimmune disease -Four-fifths of them are women. Autoimmune diseases often manifest as nonspecific, overlapping symptom making diagnosis more difficult. Not only are women more likely to develop these disabling diseases, but we are experiencing a medical gaslight emergency This makes an already challenging diagnosis even more out of reach.
As women, we deserve to be trusted health care leaders. Once we find ourselves buried under the rubble of neglect, it can take a lifetime to crawl out. Slowly, I began to see the light again.
Lindsay Karp is a freelance writer and essayist who has appeared in The Washington Post, Time, The Cut, The Oprah Daily, Good Housekeeping, and other outlets. She is writing a memoir about her diagnostic journey. You can follow her on X @KarpLindsay.
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