Doctors who dismiss or trivialize patients’ symptoms can cause long-lasting harm, according to a new study. This “medical gaslighting” can not only cause feelings of shame and anger but can also lead people to stop seeking medical help altogether.
Imagine you’ve gone to see a doctor to discuss symptoms that are concerning you, only to have them minimize, dismiss, or ignore your concerns. It’d make you think twice before seeing that doctor again, right? It might even cause you to stop trusting doctors altogether.
While this phenomenon was only recently given the name “symptom invalidation,” it’s more commonly known as “medical gaslighting.” New research led by Rutgers University has found that this behavior can cause lasting psychological damage to patients and undermine health outcomes.
“We found that patients can question reality,” said Allyson Bontempo, PhD, the lead author of the study and a postdoctoral fellow at Rutgers Robert Wood Johnson Medical School. “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.”
Diagnosis is more than a tool to guide the management of a condition. A patient without a diagnosis has no way of making sense of distressing symptoms or explaining their condition to family, friends, and workmates. Whereas a diagnosis offers a person legitimacy, a means of “authorizing” their suffering in a socially acceptable way, having no diagnosis means uncertainty and, oftentimes, an inability to access necessary health services.
To capture what was known about the negative psychological and health care consequences associated with symptom invalidation, the researchers systematically reviewed 151 qualitative studies, involving a total of 11,307 individuals. They looked at 11 specific illnesses: Ehlers-Danlos syndrome (EDS), endometriosis, fibromyalgia, Gulf War syndrome (GWS), irritable bowel syndrome (IBS), long COVID, multiple chemical sensitivity (MCS), myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), postural orthostatic tachycardia syndrome (POTS), systemic lupus erythematosus (lupus), and vulvodynia. These illnesses were chosen because diagnosis is generally contested, perceived as rare, prolonged, and/or uncertain.
The review identified four broad categories of harmful consequences arising from symptom invalidation: induced emotional states, such as shame, negative self-esteem, and risk of suicide; health care-specific emotional states, including frustration, anger, and loss of trust in medical practitioners; health care-related behaviors, including underreported symptoms and avoiding medical care; and delaying diagnosis.
“Invalidating environments in the context of health care fail to teach patients to form realistic goals or expectations in health care and thus patients harbor feelings of futility toward health care organizations and clinicians,” the researchers said. “This perceived futility appears to motivate health care system avoidance.”
The researchers say that their findings provide guidance to health care practitioners on how they can modify their behavior.
“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 admit that it can be challenging for patients who have experienced symptom invalidation, but offer some practical advice.
“Patients can do research and see if they can find ratings of the clinicians online,” said Bontempo. “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.”
The study was published in the journal Psychological Bulletin.
Source: Rutgers University
