Last spring, as I sat in the waiting room at a medical facility before meeting with a new family doctor, I anxiously turned to Facebook to try to calm my rising nerves. I’m no stranger to electrifying panic moments before meeting a new doctor. But it never gets easier.
For 13 years, starting at the age of 21, I bounced from doctor to doctor – from internists to specialists to diagnostic centers and back again – looking for a diagnosis. When I stood, my legs became weak, and when I walked, I lost strength. Muscles twitched under my skin and the pain radiated down my legs like an electric current. The physical fatigue that shattered my health was as real as the tuning fork doctors used during neurological examinations. But he was invisible, so my words were my only hope.
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According to The New York Times, “Studies have shown that compared to men, women face longer waits to be diagnosed with cancer and heart disease, are treated less aggressively for traumatic brain injury, and are less likely to be offered pain medications.” The author noted that women’s misdiagnoses often come from scientists who know much 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 lack of self-care, and that’s exactly what happened to me.
“Go home and have a martini,” the first doctor advised me in 2005. I had just revealed how walking became a burden and how the fear of what was happening inside me was as heavy as the symptoms themselves. I was waiting to be heard, validated and understood. Instead, I was told those six ridiculous words. But beyond some basic lab work, it offered nothing. No further testing. No medication. No referrals; simply hypothetical writing for a cosmopolitan.
The next doctor insisted that a chest exam was needed after I described the weakness that turned my legs into Jell-O. Desperate for help, I was vulnerable and at the will of the doctor. I stood there frozen as he touched my breast with his barbaric hands. The moment still comes back to me twenty years later, and I’m not sure I can ever erase it.
When I drove 1,100 miles to a world-renowned diagnostic facility, they repeated the lab work I already had, told me I had non-inflammatory musculoskeletal pain and recommended an exercise and behavior modification program to mentally change the way I react to my symptoms. I felt like a failure when biofeedback couldn’t calm the mounting inflammation in my nervous system. Years later, I read, “depressive-like symptoms,” listed as a diagnosis from that visit and I began to understand that they saw the fear and worry resulting from the unknown of this disease as the disease itself.
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“Why can’t you show me?” another doctor asked from the muscle twitches that flicker throughout my body sporadically. He wanted me to prove my words through the demonstration. But these involuntary fasciculations come out of their own accord and stop with the movement of that muscle. Triggering them is not an option.
Early in my search, I confided in an infectious disease doctor hoping to be met with empathy and concern. Instead, she asked, “Get out of here and stop the doctors,” as if I am leaving the medical system with my desire to live. Later, one of the many neurologists I saw insisted, “You should stop looking,” as if I were less deserving of a diagnosis than the patient before me. He said, “Not everyone gets a diagnosis,” but those words suggested that I should look past this disease that is happening inside of me and continue to live without knowing what it is or dealing with it, as if I can.
Thankfully, I didn’t hear it.
The author and her husband in 2025. Courtesy of Lindsay Karp
Often, these doctors recommend exercise. “Physical therapy can help,” they suggest. “You are deconditioned,” they would declare. But I went to bed one night during the summer of 2005 with a fully functioning body and woke up the next morning with strange symptoms. Deconditioning evolves over time and not overnight.
So, I pushed forward from day to day — year to year — earning a graduate degree, getting married, and having children through it all. By 2016, I was so weak that I was climbing stairs from a sitting position, struggling to hold the car pedal, and unable to be the mother my children deserve. I needed a diagnosis above all else, and in 2017, I finally received it.
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A lumbar puncture gave me the answer. In 2005, my brain MRI showed areas of demyelination consistent with multiple sclerosis, but a lumbar puncture – which is used to confirm suspected cases of MS – was not ordered until 2017.
“They are not specific,” I was told about these dark areas on my MRI. “Probably from a migraine,” they claimed. As a migraineur, I trusted them.
Those two letters — MS — were discouraging, but the relief lifted layers of suffering like a morning mist. I started treatment, and my search was done. I thought I could put everything behind me – and most of it is – but the trauma of being fired repeatedly follows me, a strong reminder of how I was doubted, questioned and ignored for more than ten years.
“You can come back now,” the nurse said, her voice interrupting the toxic memories that flooded my mind. When I got to the exam room, I was pale and weak; my MS symptoms get worse under stress. But this was more than mere appointment anxiety. This was more than a decade of trauma built for unbreakable measures. These were 13 years of carelessness that came back to haunt me. It was every time I cried alone on the bathroom floor — my means of escape — after being interrogated, rejected, and ignored, and I came back inside.
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The empty feeling of hopelessness returns in an instant.
I live with many chronic health conditions, so ongoing medical support is inevitable. My trust in health care providers is flawed from years of believing my best interest was paramount when it wasn’t. And when I meet a new doctor, I’m prepared to meet resistance — often, I still am. I review the questions beforehand to make sure I am polite and credible. I suppress my emotions as best I can so doctors don’t assume the symptoms stem from a mental health struggle. I strip down my presentation to a watered-down version of myself because I’ve learned that’s what’s more accepted — and then I pray that they’ll listen and find enough compassion to respond with empathy and concern.
Every time I walk into the doctor’s office, I come back to the scared young woman struggling to walk, begging for help, but still disappearing into the depths of the health care system without being heard.
The cycle never ends because the damage — and my journey itself — is etched into my body permanently, but also because our health care system has not changed how it sees women. Our words continue to be met with doubt.
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The neurologist who diagnosed me brought me back to life. When he announced his retirement, I felt the ground crumble beneath me. “I have to start all over again,” I cried to my husband that evening. “No one else believed me,” he sobbed tearfully.
By that point, the infusion I had been receiving for a few years had improved my health and allowed me to return to many activities. I was able to visit my children’s classrooms for holiday parties, go to museums with my family, and even take short hikes in the mountains. Cycling was back in my life and walking through the sand at the beach was possible once again.
I was afraid that I would lose everything that took me so long to achieve.
I thought of the frail young mother who was once crawling up the stairs with no energy. I am worried that those darkest days of my life will return.
When I visited the new neurologist’s office, the resident — who I saw first — started asking me the moment he entered the room.
“Can you explain your symptoms a little more?” he asked, his face lowering into my long grin. At first, I did as I was told. The inferior and helpless patient inside me resurfaced.
But questions from long ago were being thrown at me like bullets, and I couldn’t hold back the tears anymore. “It took me 13 years to get this diagnosis. The medication is helping me. Why are you making me start all over again?”
“We want to make sure you have the right diagnosis,” he replied as if my personal account had no value. And with those words, he definitely confirmed my fear: I was starting from ground zero. I was a female patient. I should not have been trusted.
“I told my story until the doctor came in.”
I was broken by the trauma, but I had also acquired a voice. That day, I met a neurologist who was as understanding, intelligent and open-minded as the one who diagnosed me. But I did not reach it without resistance.
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Even now, eight years after my diagnosis — and 21 years after my initial symptoms — I continue to be haunted by the trauma many women face in the health care setting. Doctors often still consider my words an exaggeration of the truth despite the credibility I had to gain with my diagnosis. That’s why I kept seeing a less-than-ideal family doctor for years instead of making the leap to find a new one like I did last spring. This trauma is the reason anxiety paralyzes me when I sit on the exam table waiting to see.
I apologize to the doctors if I reach the patient portal. During appointments, I only ask the most painful questions and if I feel that I have used my allotted time, the rest falls on the back burner. I learned to anticipate doctors’ reactions.
In the moments before I meet a new doctor, scenes from previous appointments replay in my mind, evoking the same emotional response they did in the beginning. And when a new symptom arises, I wait — because mentioning a disease that can disappear in days or weeks reduces my credibility in the future.
I’m always walking on eggshells.
Somewhere between 24 million and 50 million Americans have an autoimmune diseases — as many as 4 out of 5 of them are women. Autoimmune diseases tend to present non-specific, overlapping symptoms making them more difficult to diagnose. Not only are women more likely to be affected by one of these disabling diseases, but we are living through a medical gas lighting emergency which is making an already challenging diagnosis much more out of reach.
As women, we deserve to be trusted leaders of our medical care. Once we find ourselves buried under the rubble of neglect, it can take a lifetime to climb out. Slowly, I am starting to see the light again.
Lindsay Karp is a freelance writer and essayist with publications in The Washington Post, Time, The Cut, Oprah Daily, Good Housekeeping and other outlets. She is working on a memoir of her diagnostic journey. You can follow her on X @KarpLindsay.
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