Patients with long COVID feel ignored. Here’s how to help them

By Kristen Fuller, MD | Fact-checked by Barbara Bekiesz
Published November 1, 2022

Key Takeaways

  • The causes of long COVID (a term referring to ongoing COVID-19 symptoms) remain a mystery.

  • Patients with long COVID who feel clinicians are not taking their symptoms seriously are venting their frustration online with accusations of medical gaslighting.

  • To help address such feelings, physicians should focus on showing empathy and paying close attention to what their patients with long COVID are trying to tell them, while addressing the symptoms with the appropriate treatments.

Long COVID is stumping physicians.

The terms long COVID, post-COVID condition, or COVID long hauler refer to COVID-19 symptoms that are new, returning, or ongoing at least 4 weeks after the initial onset of COVID-19, according to the CDC.[]

How can clinicians best address the needs—and reduce the frustration—of patients with long COVID?

Mysteries of long COVID

Physicians are unsure why some healthy (and frequently young) adults are suffering from lingering COVID-19 symptoms, according to research published in JAMA.[]

“What’s unusual about the long haulers is that many initially had mild to moderate symptoms that didn’t require lengthy hospitalization—if any—let alone intensive care,” the author of the JAMA article wrote.

Jessica Dine, MD, a pulmonary specialist at the University of Pennsylvania Perelman School of Medicine, confirmed this observation in an interview for the JAMA article.

"Most of the patients that I see who are suffering from [post–COVID-19] syndrome were not hospitalized. They were pretty sick but still at home."

Jessica Dine, MD, in JAMA

Symptoms of long COVID

Long COVID symptoms can confuse patients and physicians alike, as many are nonspecific and can be linked to many different medical disorders including autoimmune diseases and chronic fatigue syndrome, thus complicating the differential diagnosis.

According to the CDC, common symptoms of long COVID include the following:

  • Fatigue

  • Respiratory problems: difficulty breathing, shortness of breath

  • Cough

  • Heart palpitations

  • Problems with memory and concentration (often referred to as “brain fog”)

  • Muscle or joint pain

  • Headache or dizziness

  • Feelings of pins and needles

  • Anxiety and depression

Medical gaslighting and long COVID

Many COVID long haulers feel their HCPs are dismissing them and not taking their symptoms seriously, as reported in an article published by SSM - Qualitative Research in Health.[] This experience is in common with that in other forms of contested illness.

As a result, patients are often leaving their doctor’s office without any form of resolution, in addition to feeling unheard and having been judged as unreliable in reporting their own symptoms.

Many of these patients then go to social media to vent their frustration.

They often use the term “medical gaslighting” to describe this phenomenon of doctors dismissing long-haul COVID patients, as the article in SSM explained.

Strengthen the therapeutic alliance

To help offset this frustration, a Medscape commentary suggested that physicians should make a deliberate effort to communicate new findings and developments gleaned from long COVID–related research to their patients.[]

Doctors can treat long-COVID symptoms even when the diagnosis is undefined. For example, numbness and tingling can be treated with specific medications, and cognitive difficulties may be treated with cognitive behavioral therapy, according to Medscape. Depressive symptoms can be treated with antidepressants.

To help rebuild the physician-patient relationship, doctors can practice empathy and listening skills, as recommended by the author of a story published in Stat.[]

"Many [patients] have found that even if they’re able to see a doctor, it can be difficult to be heard, and the best treatments remain unclear."

Alison Bond, Stat

Even when the diagnosis is unknown, physicians can still acknowledge the reality of the patient's symptoms, as well as the pain and suffering caused by them. This empathetic approach may provide some therapeutic relief as patients feel heard, understood, and validated.

Forming this therapeutic alliance can also help reassure patients that HCPs are not enemies but patient advocates who are here to help.

"Having a chronic illness is frustrating. Patients suffering with long COVID are right to feel impatient with what is, in many ways, a broken medical system."

Jack Gorman, David Scales, Medscape

What this means for you

Long COVID can be an especially frustrating experience for patients, as not all HCPs may understand how to help them. Feeling dismissed, long COVID patients often discuss their difficulties on social media and accuse HCPs of gaslighting. Show empathy and patience in working with such patients to validate their suffering and foster a collaborative relationship. Listen to them. Try to address their symptoms with appropriate therapies and keep them apprised of findings from emerging research.

Read Next: Is blood washing an effective treatment for long COVID?

Caring During COVID speaks directly to clinicians who are still facing the realities of the pandemic. Each week we feature perspectives, lessons, research, guidance, and more. Submit any question or topic you'd like to see covered, and let us know if you’d like to be a guest author.

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