Review Ignored, Dismissed, and Minimized: Understanding the Harmful Consequences of Invalidation in Health Care [...], 2025, Bontempo et al

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Ignored, Dismissed, and Minimized: Understanding the Harmful Consequences of Invalidation in Health Care—A Systematic Meta-Synthesis of Qualitative Research

Allyson C. Bontempo, John M. Bontempo, Paul R. Duberstein

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Abstract
The upsurge in the prevalence of contested, ambiguous, and difficult-to-diagnose illnesses presents challenges for clinicians who too often respond by invalidating patients’ symptoms. Although numerous qualitative studies have reported the effects of invalidation on patients’ psychological and behavioral outcomes, this body of research has not been systematically reviewed.

Informed by Linehan’s (1993) conceptualization of invalidation, this systematic review elucidated the negative consequences, of symptom invalidation, or the dismissal or minimization of a person’s experiences with illness.

We reviewed 151 qualitative reports representing 11,307 individuals with Ehlers-Danlos syndrome, endometriosis, fibromyalgia syndrome, Gulf War syndrome, irritable bowel syndrome, long COVID, multiple chemical sensitivity, myalgic encephalomyelitis/chronic fatigue syndrome, postural orthostatic tachycardia syndrome, systemic lupus erythematosus, and vulvodynia.

Consistent with Linehan’s theorizing, thematic analysis identified four broad classes of consequences: induced emotional states and beliefs (e.g., shame, suicidality), induced health care emotional states and beliefs (e.g., health care-related anxiety and trauma), induced health care behavior (e.g., health care system avoidance), and diagnostic delay. Informed by these findings, we developed a novel conceptual model explaining how symptom invalidation leads to these consequences and thereby undermines health outcomes.

Future work should explore the proposed conceptual model and identify theoretically informed interventions and policies aimed at preventing symptom invalidation to improve psychological, behavioral, and health outcomes.

Public Significance Statement
In recent years, there has been an upsurge in the prevalence of contested, ambiguous, and difficult-to-diagnose illnesses. In fact, health care interactions in which there is no known diagnosis is the fastest growing type of medical visit. This creates uncertainty for physicians who may respond by dismissing or minimizing patients’ symptoms.

This systematic review of 13 illnesses that are known to generate clinical uncertainty (e.g., endometriosis, lupus) synthesizes worldwide qualitative studies on the effects of clinician invalidation of patients’ symptoms.

Findings suggest that invalidation confers a wide range of negative outcomes ranging from painful emotional states (e.g., shame, suicidality) and distress about health care visits (e.g., health care-related anxiety or trauma) to avoidance of health services and diagnostic delay.

These findings, which have actionable implications for the training of frontline clinicians and for the evaluation of health care quality, 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.

Link | PDF (Psychological Bulletin) [Open Access]
 
This is their proposed conceptual model, the text below is their explanation:
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Figure 2. Proposed Conceptual Model

Explaining How Clinicians’ Symptom Invalidation Affects Patient Health Outcomes by Inducing Negative Emotions, Beliefs, and Health Care Behavior.

This figure depicts three broad consequences in response to invalidation: induced emotional states and beliefs, induced health care emotional states and beliefs, and induced health care behavior. Arrows signify a relationship was observed in the qualitative studies reviewed.

Under induced emotional states and beliefs, there are five proximal (self-doubt, insecure attachment, negative self-esteem, negative expectations about the future, negative moral emotions) and two intermediate (depression and suicidality) consequences.

Under induced health care emotional states and beliefs, there are three proximal (violated health care expectations, frustration and anger toward clinicians, and loss of trust in clinicians) and one intermediate consequence (health care-related anxiety and trauma).

Regarding induced health care behavior, intermediate consequences include underreporting of symptoms to clinicians and health care system avoidance.

Diagnostic delay is the only health services outcome specifically addressed in the reviewed literature.

All outcomes are multidetermined; it is plausible, but unlikely, that any particular outcome (e.g., suicidality, depression) could be solely attributable to clinicians’ implicit or explicit invalidating behavior or communication.
 
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Clinical Implications
Our review suggests that invalidation in health caresettings can generate psychological consequences that are known to be amenable to clinical intervention. It is likely that practicing clinicians routinely treat individuals who present with their own unique stories of invalidation, and we hope that this review motivates psychotherapy research, including trauma-informed research, on the topic.

Beyond undoing the harms of invalidation via psychotherapy and behavioral interventions, psychologists and other clinicians can help prevent or mitigate the harms of invalidation.

For example, psychotherapists can intervene effectively on the consequences of symptom invalidation when patients have learned fear responses.

Furthermore, clinical and health psychologists who work on multidisciplinary health care teams and in health care systems can teach medical trainees and other health care trainees about the origins and consequences of health care invalidation, how invalidation manifests in health care settings, and strategies to motivate clinicians to refrain from engaging in invalidating behavior (McDaniel et al., 2020).

Such education will likely involve an element of tolerating diagnostic uncertainty (see Hillen et al., 2017, and Epstein, 2021), given that diagnostic uncertainty can leave clinicians frustrated, anxious, and ultimately invalidating of patients’ symptoms (Schiff et al., 2018) and less patient-centered (Epstein et al., 2006).

As such, the coexistence of diagnostic uncertainty and validation of symptoms must be taught and appreciated, as patients’ symptoms do not cease to be “real” should their cause be unknown.

Quality metrics can positively impact medical practice by motivating clinicians to modify their behavior (Berwick et al., 2003; Fung et al., 2008).

As reliable, replicable data accumulate on the negative consequences of symptom invalidation and its impact on health and financial outcomes, widely used metrics such as the CAHPS survey could be restructured to incorporate a module on invalidation in the health care setting; only two items in the current CAHPS survey reflect patient-centeredness more broadly.

The routine measurement of invalidation would be expected to lead to decreases in invalidating behavior with appropriate audit and feedback.
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I have a strong dislike for this opening. Instead of focusing on how to avoid the harm from occurring, they start by talking about how the patients can be helped to fix the harm themselves.

They kind of acknowledge the practitioners’ role later on, but it’s far too little and far too late.
 
Utsikt said:
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I have a strong dislike for this opening. Instead of focusing on how to avoid the harm from occurring, they start by talking about how the patients can be helped to fix the harm themselves.

They kind of acknowledge the practitioners’ role later on, but it’s far too little and far too late.
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"Our review suggests that invalidation in health caresettings can generate psychological consequences that are known to be amenable to clinical intervention."

What the heck. Just no. Stop the gaslighting bullshit, not let's employ psychologists and psychotherapists to mop up the consequences of bad behaviour. Bizarre suggestion.

Yes, psychologists can and do work well with patients but goodness me patients have enough on their hands without having to cope/adapt/adjust to being invalidated. Crikey.

Stop the invalidation.
 
Joan Crawford said:
"Our review suggests that invalidation in health caresettings can generate psychological consequences that are known to be amenable to clinical intervention."

What the heck. Just no. Stop the gaslighting bullshit, not let's employ psychologists and psychotherapists to mop up the consequences of bad behaviour. Bizarre suggestion.

Yes, psychologists can and do work well with patients but goodness me patients have enough on their hands without having to cope/adapt/adjust to being invalidated. Crikey.

Stop the invalidation.
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The Bailing Industry has concluded that the solution to sinking boats is more bailing, not to avoid the icebergs or to patch up the holes..
 
They seem to have missed the impact of symptom invalidation on people other than the patients who are invalidated.

Symptom invalidation invites, even encourages, family and friends to stop 'facilitating the illness', to leave the person to stand on their own two feet and get on with things. It results in the withdrawal of emotional, financial and practical support. People can end up lonely, in poor housing, and lacking in food and heating/cooling and good medical care access.

Symptom invalidation invites, even encourages, medical professionals, governments and society in general to withdraw support of all sorts, stigmatise the person and treat the person as an unreliable witness in many facets of life. It perpetuates the viewing of people with these symptoms as people who do not have real symptoms and lacking in moral character.

All of these things have an impact on health outcomes.

So, the authors' model seems specifically designed to make psychotherapy of the invalidated person the answer, pretty much ignoring the societal causes/impacts.

I don't know if it was the literature the authors reviewed or the authors' own perspective or both, but the limitation of their model seems astonishing. It doesn't take five minutes of thinking to realise that they have missed some of the most important determinants of health outcomes for people with contested, ambiguous and difficult-to-diagnose conditions.
 
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abstract said:
"Our review suggests that invalidation in health care settings can generate psychological consequences that are known to be amenable to clinical intervention."
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This is coming from authors who note that suicide and missed diagnoses are a consequence of invalidation. Clinical intervention isn't much use when you are dead.

Seriously, what next? Therapy to teach sufferers of domestic abuse how to cope better with being hit?

Joan Crawford said:
What the heck. Just no. Stop the gaslighting bullshit, not let's employ psychologists and psychotherapists to mop up the consequences of bad behaviour. Bizarre suggestion.

Yes, psychologists can and do work well with patients but goodness me patients have enough on their hands without having to cope/adapt/adjust to being invalidated. Crikey.

Stop the invalidation.
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:thumbup:
 
Hutan said:
Seriously, what next? Therapy to teach sufferers of domestic abuse how to cope better with being hit?
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It’s the model.

Societal failure can never be acknowledged. Self improvement, individual action, therapy is the answer. We must teach people to cope with our society, not make a society designed to you know… meet people’s basic needs.

It’s the same reason the rehabilitation model is so popular for chronic illness, even though it just doesn’t work.

I think I’ve heard some critical studies papers call this phenomenon “therapeutic state” or “therapeutic neoliberalism”.
 
Hutan said:
This is coming from authors who note that suicide and missed diagnoses are a consequence of invalidation. Clinical intervention isn't much use when you are dead.

Seriously, what next? Therapy to teach sufferers of domestic abuse how to cope better with being hit?


:thumbup:
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The healthcare model, charge for the beating of patients then charge for the therapy so they can cope with the beatings until they inevitably kills them. This idea was meant to be you don't just pull people out of the river you go upstream and work out why they are falling in to begin with. The UK health model is kick them in and as they flow down the river struggling to breath shout "you can do it" to encourage them while any attempts to swim to shore are stopped with bows and arrows.
 
BrightCandle said:
The healthcare model, charge for the beating of patients then charge for the therapy so they can cope with the beatings until they inevitably kills them.
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Reminds me of the less-than-five minute consultation I had with a rheumatologist once, who dismissed me as soon as she saw I had been diagnosed with ME/CFS, leaving me to pay $400 odd dollars, before I went to sit in my car and cry. And the ophthalmologist I saw who, admittedly had his minions do some investigations, before telling me that my fluctuating blurry vision was due to me and my eyes getting old and that he knew all he needed to know about chronic fatigue syndrome, that it tends to affect women who can't cope, before charging me $600.

BrightCandle said:
The UK health model is kick them in and as they flow down the river struggling to breath shout "you can do it" to encourage them while any attempts to swim to shore are stopped with bows and arrows.
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:rofl: Not just the UK.
 
The focus on symptoms is also unhelpful.

Epistemic gaslighting is at least as traumatising: the insistence that you don’t know from experience that your symptoms are exacerbated by exertion, that you don’t know from experience that if you push through you will get worse not better, that you don’t actually enjoy going out and living but in reality want to hide from life to enjoy “secondary gains”.

The model makes patients responsible for their illness but is ineffective (just like this paper tells patients to be responsible for finding psychological ‘solutions’ to iatrogenic harm), so responsibility turns into blame/self-blame (it’s my fault I’m not getting better).

It undermines patients’ ability to have any autonomy and their confidence in their own understanding (I can’t trust myself, I have to trust the doctor even when I know they are wrong).

It is psychological poison, and this paper is perpetuating it by being so far detached from patient perspectives. Why would patients who have been harmed by psychologists/psychiatrists want to go anywhere near them? They are never going to be part of the solution.

Start by listening. Everything follows from that.
 
Hutan said:
Reminds me of the less-than-five minute consultation I had with a rheumatologist once, who dismissed me as soon as she saw I had been diagnosed with ME/CFS, leaving me to pay $400 odd dollars, before I went to sit in my car and cry. And the ophthalmologist I saw who, admittedly had his minions do some investigations, before telling me that my fluctuating blurry vision was due to me and my eyes getting old and that he knew all he needed to know about chronic fatigue syndrome, that it tends to affect women who can't cope, before charging me $600.


:rofl: Not just the UK.
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$ 100 per minute billed for giving a personal opinion?
 
The paper said:
The upsurge in the prevalence of contested, ambiguous, and difficult-to-diagnose illnesses
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I don't think that's true (aside from population growth anyway, but that's irrelevant). There is literally no way to know if it's true, because we don't have reliable data to compare to. But this is most likely the same phenomenon as the 'explosion' of autism and ADHD diagnoses: it was always there, it was simply dismissed and went unrecorded.
In recent years, there has been an upsurge in the prevalence of contested, ambiguous, and difficult-to-diagnose illnesses. In fact, health care interactions in which there is no known diagnosis is the fastest growing type of medical visit.
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This, especially, I don't believe to be true at all. It just went completely unrecorded, and has always been the case. The vast majority of health problems are unidentified, in part because they're usually benign and not worth the effort.

Same idea with the visibility of this problem: entirely down to modern telecommunications, the Internet and social media turning a problem that used to be endured entirely privately into one that is discussed in large communities and more prevalent in news and cultural media as a consequence.
Consistent with Linehan’s theorizing, thematic analysis identified four broad classes of consequences: induced emotional states and beliefs (e.g., shame, suicidality), induced health care emotional states and beliefs (e.g., health care-related anxiety and trauma), induced health care behavior (e.g., health care system avoidance), and diagnostic delay.
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Findings suggest that invalidation confers a wide range of negative outcomes ranging from painful emotional states (e.g., shame, suicidality) and distress about health care visits (e.g., health care-related anxiety or trauma) to avoidance of health services and diagnostic delay.
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So, they missed the only important part: harm and misery that come from surviving while ill with zero meaningful support. This is like dealing with someone whose home burned down along with everything in it, who, for some reason, isn't covered by insurance and find themselves homeless, without income, having lost all their possessions, and focusing entirely and exclusively on the affective consequences of having lost things that held sentimental value. It just completely misses out on what the problem is.

Their proposed model literally doesn't take into account the harm and misery this causes. They have no idea what they're dealing with. This is absurd. It's frankly equivalent to trying to manage people getting severe burns because they are made to touch very hot stoves by increasing the A/C. Ridiculous.
 
An article about the study was posted on the /r/science sub-reddit. Most of the comments ignore the study itself or its findings, and instead are about personal experiences with medical gaslighting. In fact most comments are about that, and most of them unrelated to those conditions, where the problem is even worse.

The science sub is about as general as it gets. It's also not supposed to discuss personal anecdotes, so this is a huge exception, and the thread may be locked later because of this.

If you'd read a general thread like this about any private company, you just know that it's about to collapse, unless it's bailed out, or is the only provider for a necessary product or service. It's simply not normal to accept this, it's unacceptable level of mediocrity. And yet there should be no expectation that anything should change, this has been reported for decades, and even studies about this, like this one, are very low quality.

It's also been posted in the /r/psychology sub-reddit, though I don't know how it generally behaves, and the comments are actually quite similar. This is a shocking indictment of the medical profession, and nothing will change any time soon. If this were posted on a medical sub-reddit, it would be quickly locked and deleted, after loads of mocking comments, some generic ones, and people bringing their own experience of it, which is not allowed.
 
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