People with long-term COVID continue to undergo medical gaslighting more than 3 years into the pandemic

It is increasingly clear that the The SARS-CoV-2 virus is not going away Soon. And for some patients, their symptoms haven’t gone away either.

In January 2023, our team of researchers from Pacific Institute on Pathogens, Pandemics and Society published a research paper on how people search for information about the long COVID. The brief was based on a scoping review, a type of study that assesses and summarizes available research. Our interdisciplinary team aims to understand the experiences of people with long-term COVID in order to identify opportunities to support health care and access to information.

COVID persisting for a long time

Long COVID (also called Post-COVID-19 Status) is a disease that occurs after infection with COVID-19, which lasts for weeks, months, or even years. First invented by a patient on Twitterthe term also represents a collective movement of people experiencing the long-term effects of COVID-19 and advocating for care. About 15 percent of adults who have had COVID still have symptoms after three months or more.

The long COVID affects systems through the body. However, fluctuations in symptoms and limited diagnostic tools make diagnosis difficult for healthcare providers, especially with more than 200 symptoms that may occur in patients. Perhaps because the long COVID presents itself in different ways, the disease has been challenged through the medical field.

To identify opportunities to reduce barriers to COVID long-term care, our team explored how patients and their caregivers access long COVID information. We have found that one of the biggest barriers patients face is medical gas lighting by the people they turned to for help.

Lack of validation leads to stigma

Medical gas lighting occurs when healthcare professionals falsely dismiss or blame patients for their symptoms. As new information about the long COVID has become more readily available, some patients continue to face gaslighting and feel their symptoms are treated less seriously by some health professionals.

This dismissal may erode trust in the health care system and can also lead to stigma and shame.

Preliminary results from our ongoing study of long-term COVID patients indicate that when physicians fail to validate a patient’s condition, it extends to community networks of family and friends who may also be unaware their symptoms, contributing to further stigma at home.

Medical gaslighting can present additional barriers to treatment, such as not being referred to specialists or lengthy COVID clinics. This, in turn, can aggravate other symptoms such as fatigue and exacerbate the psychological symptoms of long COVIDlike depression and anxiety.

Medical gas lighting is not new. It has been documented by patients with other chronic diseases, such as myalgic encephalomyelitis or chronic fatigue syndrome. And although it is common in patients with diseases not visiblemedical gas lighting is more commonly experienced by women and racialized people.

Long-term COVID patients also note gender bias, as women with prolonged symptoms feel like they are not believed. This is particularly concerning, as studies have shown that women are disproportionately more likely to experience a long period of COVID.

Learn more:
Why is no one talking about *who* has the long COVID? – Podcast

Where do we go from here?

As the long stories about COVID constantly change, it’s clear that patients face many obstacles, the first of which is having their illness minimized or ignored by others. To ensure patients have access to compassionate care, we suggest:

1. Educate physicians on long COVID

Since definitions of long COVID and its presentation vary widely, primary care physicians need support in recognizing and recognizing the condition. General practitioners (GPs) should also provide patients with information to help them manage their symptoms. This requires active listening to patients, documentation of symptoms and pay close attention to symptoms that require special attention.

Educating physicians about the full spectrum of symptoms and directing patients to available supports would reduce stigma and help physicians by reducing their need to gather information themselves.

2. Raise awareness of long COVID

To increase awareness of long COVID and reduce stigma, public health and community organizations need to work collaboratively. This may include raising awareness and informing the public about the long symptoms of COVID and providing support. This has the potential to foster community support for patients and improve the mental health of patients and their caregivers.

3. Make sure the information is accessible

In many health systems, general practitioners are guards to specialists and are considered reliable sources of information. However, without established diagnostic guidelines, patients must self-advocate and prove that their condition exists.

Due to negative encounters with healthcare professionals, patients are turning to social media platforms, including long COVID online communities on Facebook. While these platforms allow patients to validate their experiences and discuss management strategies, patients should not rely solely on social media given the misinformation potential. Therefore, it is crucial to ensure that information about the long COVID is multilingual and available in a wide range of formats such as videos, online media and physical prints.

THE recent recommendations from Canada’s Chief Science Advisor Establishing diagnostic criteria, care pathways and a research framework for long COVID is a positive development, but we know patients need support now. Improving long-COVID education and awareness will not solve all patient issues, but they are fundamental to compassionate, evidence-based care.