One of the consequences of living with an illness that isn’t yet fully understood is the tendency for healthcare providers to minimize or outright dismiss an unusual set of symptoms. Over the course of the COVID-19 pandemic, patients still living with long-term disease effects have found themselves not being taken seriously and feeling belittled by a medical system inadequately trained to address their needs. But what happens when healthcare professionals themselves are COVID long-haulers?

Shocking Discovery

Doctors, nurses, and other healthcare professionals worldwide have had a rude awakening when it comes to their own patient experience with long COVID.

When Karen Scott, a Black ob-gyn, visited an emergency room with chest pain and a rapid heart rate, she quickly found out that her physician status didn’t hold much sway. She was tested for drug use and pregnancy, and then it was suggested that her symptoms were psychosomatic. They thought she was lying when she told them she was a doctor.

In the U.K., occupational physician Clare Rayner says she’s had an “absolutely shattering” experience at the hands of her colleagues as a COVID long-hauler, despite today’s broader acceptance of the illness. Belonging to a Facebook group of roughly 1,400 other U.K.-based healthcare workers diagnosed with long COVID, she says that this kind of patient treatment by fellow medical professionals has caused a “massive breakdown in trust.”

Nurse Annette Gillaspie has had a more encouraging experience, but only because she knew that her outward symptoms (cough and rapid heart rate) would have more credibility in her doctor’s eyes. Only after she felt a measure of trust did she relate all of her invisible, less believable symptoms.

Finding Out about Post-Exertional Malaise

Physical therapists know that exercise often has a positive impact on disease. Long-haulers Daria Oller and Darren Brown followed their own advice and began exercising soon after becoming sick. Little did they realize that a simple walk and gentle bike ride would exacerbate their symptoms and leave them incapacitated for weeks.

From discussion with other physical therapists, Oller and Brown finally realized what their doctors didn’t—they were experiencing post-exertional malaise, common in people with chronic fatigue syndrome. Their experience forced them to re-examine much of what they were taught and to form the group Long COVID Physio with other long-hauler therapists to discuss their findings.

What most frustrates these therapists is that, while doctors advise against exercise for conditions in which research shows it is safe and effective, they will readily prescribe exercise for long COVID when there is evidence of the possibility for real harm.

A Different Perspective

Their long-COVID experiences have allowed these healthcare workers to witness the medical establishment’s power from a patient perspective and reflect on their own treatment of patients in need. Many of them, like Clare Rayner, realize that they may have also acted similarly in the past. 

The clinicians explain that it’s easy to dismiss patient concerns when confronted by an unfamiliar illness with no clear answers and without a lot of time to pursue a unique set of symptoms. It’s very hard for them to admit to patients and themselves that they don’t have the answers, especially when they’re trained to portray confidence at all times.

Furthermore, today’s specialization in single organ systems has left clinicians unprepared for an illness that affects the entire body.

Personal Toll

While some have adapted, scores of other healthcare professionals have left their careers. Rayner left her work as an ob-gyn because “ethically, I couldn’t do it anymore.” Alexis Misko, a physician assistant, felt it would be “traitorous” to return to medicine if she could, as she’s been housebound with long COVID since December 2020.

It’s feared that long-COVID patients will continue to be ignored with the growing frustration of overburdened healthcare workers and their lack of awareness regarding the illness.

Changing Attitudes

On the bright side, many long-haulers still in healthcare have been transformed by their experience and now understand the desperation in chronic disease patients looking for answers. These clinicians now listen and relate better, dive deeper, and are more apt to admit when they don’t know something. They’ve also been able to successfully educate some of their colleagues on long COVID.

Because of this, some contend that a major shift in medical education could be on the horizon. This depends on an adequate number of trained long-haulers who can work and fit into the system and continued openness to their expertise as both patients and clinicians.

*Yong, E. (2021, November 24). Even Health-Care Workers with Long COVID Are Being Dismissed. The Atlantic. https://www.theatlantic.com/health/archive/2021/11/health-care-workers-long-covid-are-being-dismissed/620801

Much about the novel coronavirus, i.e., COVID-19, is still not fully understood. As research progresses and our knowledge of the virus increases, information can change rapidly. We strive to update all of our articles as quickly as possible, but there may occasionally be some lag between scientific developments and our revisions.