the consequences of invalidating patients’ concerns

Social media has really exposed the trauma caused by gaslighting, dismissal, and misogyny by medical professionals. Chronic illness groups are rife with posts recounting the poor treatment they suffered at the hands of doctors. Imagine presenting with extreme fatigue, intermittent balance problems, and tingling in your hands and, after a cursory exam, being told your symptoms are due to stress and to lose weight. Two years later, you are diagnosed with multiple sclerosis after multiple doctor visits. This is a scenario that frequently occurs across specialties.

After my second son was born, I experienced dry mouth and eyes, joint pain, and significant fatigue. It was interfering with my ability to swallow, work, care for my kids, and function. When I saw my PCP, he said I was suffering from postpartum bone hunger and that everyone in Colorado had a dry mouth and eyes. That encounter stung. I doubted the validity of my symptoms and thought that maybe it was postpartum depression.

I began losing weight rapidly due to increasing abdominal pain and fear of eating as food routinely got stuck in my esophagus. Along with joint pain in my hands, I started experiencing episodes of swelling and redness. I made a follow-up appointment, and my doctor agreed to order some lab tests. All my tests were normal except for a positive ANA with a titer of 1:40, which I was told was insignificant. I reminded him that I had an extensive family history of autoimmune diseases, which he again shrugged off.

My symptoms continued to worsen, so I had a colleague order an ANA panel which showed a positive SS-A. I saw a rheumatologist who said that a positive SS-A alone is not indicative of Sjogren’s. It took me two more years and multiple doctor visits and procedures before I was diagnosed with celiac sprue, rheumatoid arthritis, and Sjogren’s syndrome.

And two additional years to start to feel better. During all those years, I lost my job, my marriage began to unravel, and I suffered from depression and anxiety from the trauma I endured in the health care system.

My story is not an anomaly. Women’s symptoms are frequently attributed to mental illness, hypochondria, or female hysteria. I was not aware of how pervasive this problem was in medicine until I developed long COVID and had social media groups to turn to when doctors dismissed me.

After I had recovered from COVID, I thought I was experiencing unrelenting panic attacks. I had almost constant palpitations, chest tightness, lightheadedness, a feeling of buzzing in my body, and horrible fatigue. This went on for about a month when I experienced presyncope at work. My medical assistant took my vital signs, my heart rate was in the 40s, and my blood pressure was 80/40. I went to the ER and was asked what I was worried about. My blood pressure had come up to 100/70, but my heart rate was still in the 40s. I was told this was due to my Lisinopril, and I was discharged home with a referral to a cardiologist. I still felt extremely dizzy but felt too defeated to argue.

The cardiologist was kind and listened to me. I completed a 2-week heart monitor, which showed runs of ventricular tachycardia up to 240. The cardiologist called, reviewed my results, and put me on Metoprolol with no follow-up appointment.

Her note stated that my condition was likely due to stress as I had lost my mother a few months prior and had recently started a small business. I accepted this and sought therapy. As the weeks passed, my fatigue became overwhelming, like my body and brain were in quicksand. I could do very little before I had to lie down. Some mornings I was too dizzy to sit up and spent the day supine by necessity.

I began researching long COVID conditions and felt my symptoms were consistent with dysautonomia and myalgic encephalomyelitis/chronic fatigue syndrome. Small fiber neuropathy due to Sjogren’s can cause dysautonomia.

I devoured podcasts and poured over posts on long COVID, ME/CFS, and dysautonomia groups on social media. I armed myself with information and treatment options that could benefit these conditions. Again, doctor after doctor dismissed me. The majority were kind. They just gaslighted me by diminishing my concerns or questioning the validity of long COVID.

I did not have the bandwidth to continue my pursuit of care. I could no longer sit on an exam table waiting to have my condition invalidated. I looked for support and treatment recommendations in Facebook and Reddit groups. I found that many posters had the same experience as I did or worse in their interactions with medical professionals. Sentiments varied from rage to grief.

If you do not know the etiology of a patient’s symptoms, have enough humility to admit this, validate their concerns, and refer them to a physician who may be able to help. Medical narcissism is dangerous. This routine dismissal of patients’ concerns is driving them, in desperation, to seek care from predatory practitioners. Or, worse, delaying a diagnosis and causing irreparable harm. We must do better.

Lisa Baron is a family physician.


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