Facing the Challenge of Health Care as a Woman

Last spring, waiting nervously in a hospital’s waiting room for a first-time appointment with a new family doctor, I found myself scrolling through Facebook, hoping to soothe my anxious thoughts. Meeting a new doctor always sparks panic within me, a feeling that, despite the countless encounters over the years, never seems to fade.

For over thirteen years, starting at 21, I switched from one doctor to another—internists, specialists, diagnostic centers—hoping for answers. My legs felt weak when standing, and walking drained me of energy. Muscles twitched under my skin, accompanied by pain that felt electric. It was a real, physical exhaustion, evidenced by the tuning fork used during neurological assessments, yet, in many ways, invisible. My voice became my sole lifeline.

Research indicates—especially among women—longer wait times for cancer and heart disease diagnoses, less aggressive treatment for traumatic brain injuries, and diminished likelihood of pain medication offers. Often, these misdiagnoses occur because doctors understand much less about women’s health compared to men’s. Their tendency to attribute women’s symptoms to psychological factors, poor habits, or lack of self-care affected my own experience profoundly.

In 2005, after detailing my struggle with walking, the first doctor suggested, “Go home and have a martini.” I anticipated understanding and validation but received only this absurd response. He conducted minimal lab work and offered no medication, no referrals—just a cocktail party suggestion.

Another physician recommended a breast exam when I described my excessive leg weakness, leaving me vulnerable on the exam table. I remember that moment vividly even now, two decades later, and I doubt I’ll ever erase that memory.

Traveling 1,100 miles to a prestigious diagnostic center offered little relief. They repeated tests I’d already undergone, diagnosed me with non-inflammatory musculoskeletal pain, and suggested behavior modification strategies, as if changing my mental approach to my symptoms was the answer. It crumbled my confidence when methods like biofeedback didn’t alleviate the inflammation in my nervous system. Much later, I noticed “depressive-like symptoms” labeled on my diagnosis from that visit, realizing they perceived my worries about the unexplained distress as the condition itself.

One doctor even pressured me to demonstrate muscle twitches, believing tangible proof would validate my words. But those twitches come and go, each muscle’s involuntary movements impossible to summon on command.

In the early days of my journey, I confided in an infectious disease specialist, seeking empathy, yet she told me to “stop seeing doctors,” implying my desire for answers was a burden. Another neurologist insisted I should abandon my quest for a diagnosis as if I were undeserving of clarity compared to others. “Not everyone gets diagnosed,” he remarked, urging me to overlook the turmoil inside me, as if that were simple.

Thankfully, I ignored that advice.

Doctors frequently recommended physical activity and called me “deconditioned.” Yet, I remembered going to bed one night in 2005 feeling healthy, only to wake up the next morning with strange symptoms. Deconditioning isn’t something that occurs overnight; it builds gradually over time.

So, I pressed on—day by day, year by year—completing my graduate degree, marrying, and having children. By 2016, weakness consumed me; I had to crawl up the stairs and struggled to drive. I wanted a diagnosis above all else, and finally, in 2017, I got it.

A lumbar puncture confirmed what my brain MRI had hinted at in 2005: signs of multiple sclerosis. However, that critical lumbar puncture wasn’t ordered until 2017.

“They’re non-specific,” were the words I heard about the abnormal areas in my MRI, which the doctors suggested stemmed from migraines. Trusting their expertise, I accepted this view.

Though the diagnosis—MS—felt daunting, a wave of relief washed over me. I started treatment, believing my extensive search for answers was finally at an end. Much of it is behind me now, yet the trauma of being dismissed for so long lingers, a constant reminder of being doubted and ignored for over a decade.

“You can come back now,” said the nurse, jarring me from the toxic memories flooding my mind. Stepping into the exam room felt jittery; my MS symptoms often intensify under stress. But it was more than typical appointment anxiety. It was a decade’s worth of trauma manifesting as a wall of dread—every moment I cried alone, feeling invisible, replaying in my thoughts.

That overwhelming hopelessness rushed back with unsettling clarity.

Living with multiple chronic conditions requires some ongoing medical support, yet my trust in health care providers has been shaken from years of feeling my concerns were secondary. When I meet new doctors, I brace for potential rejection. I prepare questions carefully, determined to convey credibility. I suppress my emotions, fearing they might downplay my symptoms as mere mental health issues. I present a muted version of myself, hoping for understanding and empathy in return.

Each time I step into a doctor’s office, I revert to that terrified young woman, pleading for help while feeling unseen within the health care system.

This exhausting cycle seems endless, marking my journey with permanent scars, underscored by a healthcare system still failing to recognize women’s concerns. Our words often fall on skeptical ears.

When my diagnosing neurologist retired, I felt as if my world was crumbling. “I’ll have to start over again,” I told my husband, tears filling my eyes. “No one else believed me,” I sobbed.

Fortunately, by that time, the treatment I’d been receiving had fortified my strength and restored many activities to my life. I enjoyed participating in my sons’ school events, strolling through museums with my family, and even short walks in the mountains. I could bike again and felt capable of walking along the beach.

But the fear of losing everything I had gained weighed heavily on my mind.

The image of my past self—struggling, crawling up the stairs, utterly drained—haunted me. Would I once again face those dark days?

During my first visit to a new neurologist, the resident entered and immediately began questioning me about my symptoms.

“Could you explain your symptoms a little more?” His eyes fixed on my extensive chart. Initially, I obeyed. The old feelings of vulnerability crept back.

But as he fired questions at me, I felt tears spilling over. “It took me 13 years to get this diagnosis. The medication is working. Why do I have to start from scratch again?”

“We need to ensure your diagnosis is correct,” he replied, as if my experiences didn’t matter. In that moment, I felt my worst fears realized: I was back at square one. As a female patient, I was deemed less credible.

“I’m done sharing my story until the doctor arrives.”

While I had been overwhelmed by the trauma, I also discovered a voice. Eventually, I met a neurologist who was compassionate and perceptive, yet my journey to her was not without hurdles.

Years after my diagnosis and decades after my first symptoms, the trauma endured by many women remains fresh. Despite the credibility I should have gained through my diagnosis, doctors often still view my claims as exaggerations. This trauma made it difficult for me to leave a subpar family doctor until last spring. Anxiety grips me at every appointment as I sit on that exam table.

I hesitate, apologizing to doctors when I communicate through the patient portal. During visits, I limit my questions to the most urgent concerns, holding back others for fear of running out of time. I’ve learned to expect certain reactions from doctors.

As I anticipate meeting a new doctor, earlier experiences replay in my head, stirring the same emotions as before. I delay mentioning new symptoms, fearful that doing so might compromise my credibility.

I’m continuously walking on eggshells.

Somewhere between 24 million and 50 million Americans are afflicted by autoimmune diseases, with women making up a significant proportion. These diseases often present non-specific symptoms, complicating accurate diagnoses. Women face not only a higher probability of encountering these debilitating conditions but experience systemic neglect, exacerbating the challenges of obtaining a diagnosis.

As women, we deserve to lead our health care narratives. Yet, once we find ourselves buried in layers of neglect, it can take a lifetime to emerge. Bit by bit, I’m beginning to see a glimmer of hope once again.