Article extracts
People with long COVID continue to experience medical gaslighting more than 3 years into the pandemic.
“Long COVID patients face many barriers, the first of which is having their illness minimized or disregarded by others” say experts from The Pacific Institute.”
It’s increasingly clear that the SARS-CoV-2 virus is not going away any time soon. And for some patients, their symptoms haven’t gone away either.
In January 2023, our team of researchers at the Pacific Institute on Pathogens, Pandemics and Society published a research brief about how people seek out information about 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 COVID in order to identify opportunities to support health care and access to information.
Lingering long COVID
Long COVID (also called Post COVID-19 condition) is an illness that occurs after infection with COVID-19, lasting weeks to months, and even years. First coined by a patient on Twitter, the term also represents a collective movement of people experiencing the long-term effects of COVID-19 and advocating for care. Around 15 per cent of adults who have had COVID still have symptoms after three months or more.
Long COVID affects systems throughout the body. However, symptom fluctuations and limited diagnostic tools make it challenging for health-care providers to diagnose, especially with over 200 symptoms that may present in patients. Perhaps because long COVID presents itself in many different ways, the illness has been contested across the medical field.
To identify opportunities to reduce barriers to long COVID care, our team has explored how patients and their caregivers access information about long COVID. We have found that one of the most significant barriers faced by patients is medical gaslighting by the people they have turned to for help.
Lack of validation leads to stigma
Medical gaslighting occurs when health-care practitioners dismiss or falsely blame patients for their symptoms. While new information about long COVID has become more readily available, some patients continue to face gaslighting and feel that their symptoms are treated less seriously by some health-care professionals.
This dismissal can erode trust in the health-care system and can also lead to stigma and shame.
Medical gaslighting can present additional barriers to treatment, such as not being referred to specialists or long COVID clinics. This can, in turn, compound other symptoms such as fatigue, and exacerbate the psychological symptoms of long COVID, such as depression and anxiety.
Medical gaslighting isn’t new. It has been documented by patients with other chronic conditions, such as myalgic encephalomyelitis or chronic fatigue syndrome. And while this is common for patients with non-visible illnesses, medical gaslighting is more commonly experienced by women and racialized people.
Where do we go from here?
While long COVID information is constantly shifting, it’s clear that patients face many barriers, the first of which is having their illness minimized or disregarded by others.