Wellness & Healthy Living

When doctors dismiss symptoms, patients suffer long-term harm

When doctors dismiss symptoms, patients suffer long-term harm
Invalidating a patient's symptoms can cause shame, anger, and suicidality
Invalidating a patient's symptoms can cause shame, anger, and suicidality
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Invalidating a patient's symptoms can cause shame, anger, and suicidality
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Invalidating a patient's symptoms can cause shame, anger, and suicidality

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

8 comments
8 comments
TechGazer
It's good to have the problem recognized. The problem is how to deal with the cause of the problem, which boils down to money. Medical problems that can be diagnosed and solved (prescription, referral for treatment) in minutes bring in $$$. Problems that can take hours of explaining vague symptoms, and don't have a clinical test for, and don't have a clear treatment available, and can't be charged for all that time, take up time that could be earning quick money.
My guess is that the likely official solution to this problem will be to have doctors give patients some useless comments that are supposed to reduce their feeling of dismissal ... while dismissing them.
paul314
There's a long history of this kind of thing. And there's also a vicious circle where gaslighting by doctors encourages gaslighting by patients, because if a doctor isn't listening to what you tell them, why keep telling them. Which in turn leads the doctors to think their treatments are succeeding wonderfully because the patients for whom the treatments are failing don't bother with those doctors any more.
Rusty
One of the pitfalls of the internet. People "think" they have a problem, look online, then run to the doctor. Plus, with all of the (expensive) drug ads on television, what is a doctor to do?
Alan
A couple of years ago for the first in my life, I was the victim of a gaslighting attempt at a famous teaching hospital in Silicon Valley CA by the MD who was then the head of their sports cardiology department. Not only this but he was over 90 minutes late for the appointment!
It's debasing to be belittled by a supposedly professional MD. And then he gets to bill insurance. Sheese.
Alan
@TechGazer - The solution is to use an AI to discuss your symptoms and pre-diagnose BEFORE engaging with an MD. This way you'll have a list of symptoms, possible causes and possible tests to query on with the MD.
I use Perplexity.ai for this. And no, I have not experienced any stupid answers (often referred to as "hallucinations").
Jinpa
When the actual causes of problems are found, the victims of this medical malpractice should report the history to the medical licensing agencies. Enough of that reporting should get some action. Then there are attorneys who specialize in med-mal cases, usually on a contingent-fee basis.
MCG
Good this is being brought to light. I had mold exposure, some of it lodged in my back tissue after I got it to move out of my lung. The doc just talked to me for an hour, we finished by basically him saying I "look healthy". He even allowed me to press on his back, respectfully showing him what it felt like to me (quite irritating), and I left with no help or prescription, I was stunned. It simply reaffirmed to me that self-care, research and prevention are the way to go. A doctor can save your life, yet prevention can save you from the doctor.
Eggster
I guess we need a modified version of the Hippocratic Oath for such situations - First, assume there is a problem, then assume the patient does not know how to describe it to the doctor.
Regarding self-diagnosis, something that I have observed in exploring dietary deficiencies is that even the best sources offer a laundry list of symptoms ... there is no progression, you are either healthy, or have life-threatening symptoms. It's not like turning a switch on or off. The reality is that symptoms can be expected to 'accumulate' over time, but in the absence of a description of symptom progression, the opportunity to diagnose the underlying issue may be lost because one is only experiencing half of the symptoms.