long covid sufferers are being invalidated and it is breeding patient mistrust; image of woman with headache laying on couchInvalidation of a patient’s experiences and symptoms is creating a dangerous mistrust that could have dire consequences, says Associate Professor Melissa D. Pinto, PhD, RN, FSAHM, FAAN.

While some patients were fortunate to see providers who listened and were curious about their experience with long-haul COVID, Pinto says, others report being disbelieved, dismissed and endured medical gaslighting by their providers. [Read ‘People are suffering and they are losing hope’]

The latter group has disengaged from care. “We often hear these patients say ‘I’m never going back. I’m done.’ “

She worries about those patients and whether they will seek care for serious problems later.

“What happens if they start to have chest pain? Will they not go to the hospital because they’re afraid they’ll be gaslighted or dismissed?”

Post-Acute SARS-CoV-2 Infection (PASC), she points out, is a new illness and there is much left to learn. To not listen is to close off a valuable resource.

“Where will we get our information?” Dr. Pinto asks. “From the patient. We have to validate their experience to maintain that trust.”

‘An urgent public health crisis’

Associate Professor Candace Burton, PhD, RN, ANF-BC, AGN-BC, FNAP notes that such invalidation is trauma on top of the trauma of the pandemic itself.

“The consequences of not listening to patients is an urgent public health crisis that will only cause more suffering if people aren’t heard, believed and alleviated,” she says, noting that people have killed themselves due to unbearable PASC symptoms for which they could not get treatment.

Most notably, Dawson’s Creek writer Heidi Ferrer and Texas Roadhouse CEO Kent Taylor died by suicide because of unrelenting PASC symptoms.

The majority of sufferers are also female, a population that has historically struggled to be believed when they report their experiences, Dr. Burton says.

“Women have told us symptoms like chest pain were quickly dismissed as anxiety,” she says. “Other problems, like fatigue and brain fog, were not given the appropriate workup.”

Contact Melissa Pinto or Candace Burton.

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