Last spring, as I sat in the waiting room at a medical facility before meeting a new family doctor, I anxiously scrolled through Facebook trying to calm the nerves surging within me. I am no stranger to the panic that electrifies me moments before meeting a new doctor. But it never gets easier.
For 13 years, beginning at the age of 21, I bounced from doctor to doctor — from internists to specialists to diagnostic centers and back again — searching for a diagnosis. When I stood, my legs weakened, and when I walked, I ran out of strength. Muscles twitched beneath my skin and pain radiated down my legs like an electrical current. The physical fatigue that shattered my strength was as real as the tuning fork doctors used during neurological exams. But it was invisible, so my words were my only hope.
According to The New York Times, “Studies have shown that compared with 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 stem from scientists knowing far less about the female body as compared with the male body — 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’d just revealed how walking had become burdensome and how the fear of what was happening inside of me was equally as heavy as the symptoms themselves. I was expecting to be heard, validated and understood. Instead, I was told those six ludicrous words. But beyond some basic lab work, he offered nothing. No further testing. No medication. No referrals; simply a hypothetical script for a cosmopolitan.
The next doctor insisted a breast exam was necessary after I described the weakness that turned my legs into Jell-O. Desperate for help, I was vulnerable and at the will of the physician. I lay there frozen as he touched my chest with his barbaric hands. The moment still replays in my mind two decades later, and I’m not sure I can ever erase it.
When I flew 1,100 miles to a world-renowned diagnostic facility, they repeated lab work I’d 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 inflammation surging in my nervous system. Years later, I read, “depressive-like symptoms,” listed as a diagnosis from that visit and I started to understand that they saw the fear and worry resulting from the unknowns of this disease as the disease itself.
“Why can’t you show me?” another doctor demanded of the muscle twitches that flickered throughout my body sporadically. He wanted me to prove my words through demonstration. But these involuntary fasciculations erupt of their own volition and cease with movement of that muscle. Eliciting them isn’t an option.
Early in my search, I poured my heart out to an infectious disease physician hoping to be met with empathy and concern. Instead, she demanded, “Leave here and stop seeing doctors,” as if I were clogging 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 were less deserving of a diagnosis than the patient before me. He said, “Not everyone receives a diagnosis,” but those words suggested I should look beyond this disease raging inside of me and go on living without knowing what it is or treating it, as if I could.
Thankfully, I didn’t listen.
Often, these doctors recommend exercise. “Physical therapy might help,” they’d suggest. “You’re deconditioned,” they’d declare. But I’d gone to bed one evening during the summer of 2005 with a fully functioning body and awoken the next morning with foreign symptoms. Deconditioning evolves over time and not in the darkness of one night.
So, I pushed onward from one day to the next — one year to another — earning a graduate degree, getting married, and having children through it all. By 2016, I was so weak that I was climbing the stairs from a sitting position, struggling to hold down the car pedal, and unable to be the mother my children deserved. I needed a diagnosis above anything else, and in 2017, I finally received it.
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 — wasn’t ordered until 2017.
“They’re non-specific,” I was told of these darkened areas on my MRI. “Likely from migraines,” they claimed. As a migraine sufferer, I trusted them.
Those two letters — MS — were daunting, but relief lifted layers of suffering like a morning fog. I began treatment, and my search was done. I thought I could put all of it behind me — and much of it is — but the trauma from being dismissed repeatedly follows me, a stark reminder of how I was doubted, questioned and ignored for over a decade.
“You can come back now,” the nurse said, her voice interrupting the toxic memories streaming in my mind. When I reached the exam room, I was jittery and weak; my MS symptoms worsen under stress. But this was more than simple appointment anxiety. This was over a decade of trauma built up to unbreakable measures. This was 13 years of neglect replaying in my mind. It was every time I’d cried alone on the bathroom floor — my means of escape — after being questioned, dismissed, and ignored, echoing within me again.
The empty feeling of hopelessness returns in an instant.
I live with multiple 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 of utmost importance when it wasn’t. And when I meet a new doctor, I’m prepared to be met with resistance — often, I still am. I review questions beforehand to ensure I sound educated and believable. I stifle my emotions as best I can so that doctors don’t assume symptoms stem from mental health struggles. I strip my presentation down to a numbed version of myself because I’ve learned that’s what’s more widely accepted — and then I pray they listen and find enough compassion to respond with empathy and concern.
Every time I enter a doctor’s office, I revert to the scared young woman struggling to walk, begging for help, yet disappearing into the depths of the health care system without being heard.
The cycle never ends because the damage — and my journey itself — is carved into my being with permanence, but also because our health care system hasn’t changed how it views women. Our words continue to be met with doubt.
The neurologist that 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 that evening. “No one else believed me,” I sobbed through tears.
By that point, the infusion I’d been receiving for a few years had improved my strength and allowed me to return to many activities. I could visit my sons’ classrooms for holiday parties, meander through museums with my family, and even take short walks through the mountains. Biking had returned to my life and walking through the sand at the beach was possible once again.
I feared I’d lose everything that had taken me so long to achieve.
I envisioned the debilitated young mother I once was crawling up the stairs devoid of energy. I worried those darkest days of my life would return.
When I visited the new neurologist’s office, the resident — whom I saw first — 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. At first, I did as I was told. The inferior, helpless patient within me resurfaced.
But questions from long ago were being thrown at me like bullets, and I couldn’t stifle the tears any longer. “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. And 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’d been broken by the trauma, but I’d also gained a voice. That day, I met a neurologist as understanding, intelligent, and open-minded as the one who diagnosed me. But I didn’t reach her without resistance.
“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.”
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 should have earned with my diagnosis. It’s why I continued seeing a less-than-ideal family doctor for years instead of making the leap to find a new one as I did last spring. This trauma 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’ve used up my allotted time, the remainder fall to the back burner. I’ve 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. And when a new symptom arises, I wait — because mentioning an ailment that might disappear in days or weeks diminishes my future credibility.
I’m always walking on eggshells.
Somewhere between 24 million and 50 million Americans have an autoimmune disease — as many as 4 out of 5 of them are women. Autoimmune diseases tend to present with non-specific, overlapping symptoms making them more challenging to diagnose. Women are not only more likely to be struck with one of these disabling diseases, but we are living through a medical gaslighting emergency that is making an already challenging diagnosis that much further out of reach.
As women, we deserve to be trusted leaders of our medical care. Once we find ourselves buried beneath the rubble of neglect, it can take a lifetime to climb out. Slowly, I’m 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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