When doctors don’t listen, patients stop talking

When doctors don't listen, patients stop talking © Krakenimages.com - stock.adobe.com

A doctor shrugs off a patient’s concern. Test results come back normal, and the patient leaves with the assumption that it’s probably anxiety. The appointment ends, but the effects linger.

According to a new report from Rutgers Health, these encounters — when clinicians dismiss, downplay or outright ignore a patient’s symptoms — can result in long-term psychological and behavioral damage. The phenomenon is known in medical literature as “symptom invalidation,” but to many patients, it’s simply “medical gaslighting.”

Published in Psychological Bulletin, the review synthesized findings from 151 qualitative studies involving more than 11,000 patients. The individuals represented a wide range of contested or difficult-to-diagnose illnesses, including fibromyalgia, long COVID, endometriosis and lupus.

Across the board, the review found that invalidating medical encounters caused “a wide range of negative outcomes,” including shame, suicidality, anxiety and avoidance of future health care.

“We found that patients can question reality,” said Allyson Bontempo, a postdoctoral fellow at Rutgers Robert Wood Johnson Medical School and lead author of the review. “They ask, ‘Am I making this up? Is this all in my head?’ We also found symptom invalidation is associated with depression, suicidality and health care-related anxiety that actually can rise to the level of trauma responses.”

What happens after patients are dismissed

The review categorized the consequences of symptom invalidation into four broad areas:

1. Emotional harm: Self-doubt, shame, hopelessness.
2. Health care-related distress: Anxiety, trauma, loss of trust.
3. Behavioral changes: Avoiding doctors or downplaying symptoms.
4. Diagnostic delays: These can worsen disease progression and health outcomes.

“Patients reported downplaying their symptoms to doctors so they wouldn’t appear dramatic or like they’re exaggerating,” Bontempo said. Some patients went further, disengaging from the health system altogether.

“One patient had said that they refuse to go in even if it’s not related to endometriosis,” she said.

An epidemic fueled by uncertainty

The researchers noted that clinical encounters involving uncertainty — where there is no clear diagnosis — are now the fastest-growing type of medical visit. This shift is being driven in part by emerging and ambiguous syndromes like long COVID and postural orthostatic tachycardia syndrome (POTS), which don’t fit easily into standard diagnostic frameworks.

Members of the research team argue that symptom invalidation persists in part because “medical training hasn’t kept pace with increasing uncertainty.” As they write in the paper, algorithm-based workflows often “leave little room for listening to complex stories that don’t fit neatly into test panels or insurance codes.”

What clinicians can do

Bontempo emphasized that validating a patient’s experience does not require a definitive diagnosis.

“I don't recommend reassurance about it ‘probably being nothing serious’ to patients who have a lot of distress about their symptoms,” Bontempo said. “Patients appreciate clinicians communicating their uncertainty and admitting they don’t know something.”

The researchers developed a conceptual model linking symptom invalidation to emotional distress, health care withdrawal and ultimately poorer health outcomes. They argue that reducing invalidation should be a priority for clinician training and systems design.

Patients, pushed into self-advocacy

The study also explored what happens when patients are forced to advocate for themselves in response to dismissal — something many find difficult or unsustainable.

“Patients can do research and see if they can find ratings of the clinicians online,” Bontempo said. “But it’s hard for patients to be in a situation like this where they must advocate for themselves so aggressively. One good strategy is to bring a partner, an adult child, a friend or anyone else who can support their statements about symptoms when talking to clinicians.”

A call for reflection

While the findings draw attention to gaps in clinician training and systemic pressures, Bontempo and her team emphasize that even small changes in how clinicians respond to patients can reduce harm.

The report’s authors conclude that “invalidation confers a wide range of negative outcomes,” and that these results “may provide hope to those with difficult-to-diagnose illness that their suffering is real and begins to offer the validation they so desperately seek.”