Medical gaslighting — iniquitous past and bleak present

Gaslighting is a very convenient one-word concept, as its meaning spans complex manipulative practices in various parts of the society (personal relationships, politics and more recently medicine). It reached its peak in 2022, when it became a word of the year on Merriam-Webster Dictionary, seeing a 1740% increase in lookups of the word.

Merriam-Webster defines gaslighting as:

1

: psychological manipulation of a person usually over an extended period of time that causes the victim to question the validity of their own thoughts, perception of reality, or memories and typically leads to confusion, loss of confidence and self-esteem, uncertainty of one’s emotional or mental stability, and a dependency on the perpetrator

or

2

: the act or practice of grossly misleading someone especially for one’s own advantage

“Everyone hurts in one way or another – try focusing less on your pain”

Today, I would like to focus on medical gaslighting. It is something that, undoubtedly, a vast number of people with chronic and/or rare conditions experienced at some point. Examining how it comes about and its mechanisms should lead to understanding that it is a problem deeply ingrained in the medical enterprise as a whole (and in some ways necessary for it to function in its current state). Our working definition¹ of medical gaslighting for the purpose of this post is going to be:

a set of biased, inaccurate beliefs and/or practices present in the healthcare system, in relation to patients; it may lead to inadequate and delayed diagnosis² and care, patients questioning their sanity and validity of their own symptoms, growing frustration, breakdown of doctor-patient relationship, and general distrust in allopathic medicine

This phenomenon is so prevalent in the medical setting, because gaslighting does not have to be intentional. It is rather based on internalized³ biases and preconceptions, such as the one that women are more prone to catastrophizing and exaggeration of their pain — which leads to women being prescribed more psychotherapy and men being prescribed more pain medicine. ⁴

Due to dreadfully long history of oppression of People of Colour, it comes as no surprise that healthcare is also still rife with racialized medicine. Atrocities like Tuskegee Syphilis Study still happened recently enough to be in the living memory of Black people. This will hopefully serve as a bit of context, but even though societies might have moved on from committing atrocities like this or James Marion Sims’ experiments, there is still a pervading feeling of injustice among Black people when it comes to their treatment in medical settings. Knowing this is all the more so important, because it may explain skepticism towards some treatments, which may otherwise be keenly ascribed to backwardness and lack of education by an ignorant clinician.

The last two notable groups of people more likely to experience medical gaslighting are people with disabilities (especially invisible disabilities) and LGBTQIA folks.

One recent example of Simon Wessely, from my first post on the blog, illustrates how much structural support pseudoscientific, often unfalsifiable, views may hold.

The concept of falsifiability introduced by Popper in The Logic of Scientific Discovery (1934), when applied to a scientific theory, means that you can think of an experiment or observation that would be able to disprove the theory. The most commonly given example is a claim “all swans are white” which can be falsified by being presented with a black swan. As much as the concept has been developed and critiqued over the decades, it still features quite prominently as a somewhat scientific rule of thumb — discerning science from pseudoscience.

Simon Wessely deems various disorders, like premenstrual syndrome, fibromyalgia, temporomandibular joint dysfunction among others, to be truly psychosomatic in origin.⁵ This hypothesis would be falsifiable in a research setting, only inasmuch as if researchers discovered biomarkers which would prove those conditions in fact have organic basis (for the sake of this argument let’s forget that some have actually been described), as opposed to having false beliefs about being ill.

The problem is that we cannot prove what organic pathology a person with fibromyalgia may have in a clinical setting, as simply no tests exist to do that at the moment. There is a pretty common tendency in those situations to play the anxiety or psychosomatic card by a careless clinician. The more responsible thing to do is to believe the patient’s version of events and assume some poorly-described etiology is at play, instead of questioning the person’s sanity; to do otherwise is to perform epistemic injustice⁶ and deny the patient the knowledge of his own body.

The main issue here is that psychogenic disease by definition should not have biomarkers, as otherwise it is not psychogenic. If a person is not responding to psychotherapy, it can be concluded that they are not trying hard enough and there are more unconscious conflicts at root of the symptoms — which again, cannot be disproven. This means that it should be the very last position on the differential diagnoses list of a conscientious doctor.

The stigmatizing view that functional disorders are simply psychogenic unfortunately gained significant traction, and I suspect Wessely et al have been one of its driving factors — their article in The Lancet being cited 1743 times.

Fortunately, nowadays, this is widely considered a myth in scientific circles,^7,8,9 although still quite prevalent in clinics — even more as an unexamined unconscious bias — and I suspect it will take years to undo the harm this did.

If you wish to make an apple pie from scratch, you must first invent the universe

The apple pie in this case being medical gaslighting, and the universe being necessary environment for it to flourish.

To understand the nature of gaslighting better, let’s look at Foucault’s description of power.¹⁰ Please, don’t be discouraged by the dense style of writing typical for continental (especially French) philosophers and don’t spend too much time deciphering the whole fragment.
This general narrative helps to understand how discrimination may be unintentional, and how power (and gaslighting) in this case can be exercised, or rather exercise itself through various agents owing to structure of relations within a society:

Now, the study of this micro-physics presupposes that the power exercised on the body is conceived not as a property, but as a strategy, that its effects of domination are attributed not to ‘appropriation’, but to dispositions, manoeuvres, tactics, techniques, functionings; that one should decipher in it a network of relations, constantly in tension, in activity, rather than a privilege that one might possess; that one should take as its model a perpetual battle rather than a contract regulating a transaction or the conquest of a territory. In short this power is exercised rather than possessed; it is not the ‘privilege’, acquired or preserved, of the dominant class, but the overall effect of its strategic positions – an effect that is manifested and sometimes extended by the position of those who are dominated. Furthermore, this power is not exercised simply as an obligation or a prohibition on those who ‘do not have it’; it invests them, is transmitted by them and through them; it exerts pressure upon them, just as they themselves, in their struggle against it, resist the grip it has on them. This means that these relations go right down into the depths of society, that they are not localized in the relations between the state and its citizens or on the frontier between classes and that they do not merely reproduce, at the level of individuals, bodies, gestures and behaviour, the general form of the law or government; that, although there is continuity (they are indeed articulated on this form through a whole series of complex mechanisms), there is neither analogy nor homology, but a specificity of mechanism and modality. Lastly, they are not univocal; they define innumerable points of confrontation, focuses of instability, each of which has its own risks of conflict, of struggles, and of an at least temporary inversion of the power relations. The overthrow of these ‘micro-powers’ does not, then, obey the law of all or nothing; it is not acquired once and for all by a new control of the apparatuses nor by a new functioning or a destruction of the institutions; on the other hand, none of its localized episodes may be inscribed in history except by the effects that it induces on the entire network in which it is caught up.

This is relevant insofar as we talk about internalized biases; and the necessary infrastructure for gaslighting being dysfunctional healthcare system.
One may argue that the healthcare system provides conditions needed for gaslighting to thrive.

The first piece of the puzzle is the length of clinical consultations. Irving et al (2017) found that:

Average consultation length differed across the world, ranging from 48 s in Bangladesh to 22.5 min in Sweden. We found that 18 countries representing about 50% of the global population spend 5 min or less with their primary care physicians.¹¹

The lack of time forces physician to take a cookie-cutter approach to medicine. Generally speaking, patient’s subjectivity in such a setting is reduced to a minimum, as the healthcare provider has to focus on picking up some key words from the patient’s story (such as pain, diarrhoea, tiredness, fatigue etc.), paying less attention to the natural history of the disease. This leads to empirical trials of some medications, and if that fails, diagnostics such as imaging techniques may be utilized (possibly after a referral to a specialist takes place, depending on the country). While undoubtedly often useful, they may also serve as a crutch for inadequate history taking or as a CYA technique against medical malpractice claims (harm of not doing a necessary test is considered to outweigh harm of doing an unnecessary test).¹²

At the heart of healthcare in some countries, such as the USA, lies a huge conflict of interest, namely between the patient/doctor duo and the patient’s insurance company who, as Danielle Ofri deftly put it here, holds the purse strings that determines payment to doctors. This grotesque dialectic colours the whole experience of a patient simply looking for help. The extent of the help they may get will be subject to the insurer choosing the most financially beneficial outcome for themselves.

In the case of the countries with public healthcare situation is no less complicated, even if universal healthcare in itself is commendable. The function of the insurance company in this scenario is fulfilled by the state. It is no secret that the interests of an individual are often different than the interests of the state. In that, the state is looking to find the most cost-effective methods of maintaining its population in relatively good health. It is sadly a strictly utilitarian calculation that omits matters like subjectivity and the right to be free of pain.¹³

Again, this situation promotes the most cost-effective treatments, but only insofar as the treatment is able to significantly reduce disability, which is often not the case in severe chronic conditions. In that case, the guidelines may shift the emphasis to psychological therapies like CBT¹⁴ — which was found to have small or very small beneficial effects for reducing pain, disability, and distress in chronic pain¹⁵ — that implicitly shift at least part of the responsibility for getting better from the doctor onto the patient, but also conveniently can be delivered via the Internet, by telephone call, or by computer programme¹⁶, thus reducing the healthcare costs and mitigating doctor shortage.

This is likely why psychosomatic labeling of patients with problematic diagnoses fell on fertile ground — psychosomatic label allows to free up the healthcare resources that would otherwise be occupied by performing unrewarding examinations and offering largely ineffective treatments to a patient with a poorly-described pathology; it also allows the clinician to finally be rid of an unhappy difficult patient, thus increasing morale.

The same applies to functional gastrointestinal disorders, or now Disorders of Gut-Brain Interaction (DGBI). Patients are conditioned to think about their problem more in terms of miscommunication between various organs rather than a structural problem (until an actual etiology is found, like in the case of Bile acid malabsorption [BAM] that suddenly stopped being IBS/Disorder of Gut-Brain Interaction once the explanation for the symptoms was found) which just breeds more confusion. Needless to say, I find this framework mostly useless, but I don’t want to get sidetracked.

References:

1. Own definition. ↩︎
2. Bleicken B, Hahner S, Ventz M, Quinkler M. Delayed diagnosis of adrenal insufficiency is common: a cross-sectional study in 216 patients. Am J Med Sci. 2010 Jun;339(6):525-31. doi: 10.1097/MAJ.0b013e3181db6b7a. PMID: 20400889.
   The authors report the following:
   “Less than 30% of woman (sic) and 50% of men with AI were diagnosed within the first 6 months after onset of symptoms. Twenty percent of patients suffered >5 years before being diagnosed. More than 67% of patients consulted at least 3 physicians, and 68% were primarily false diagnosed. The most common false diagnoses were of psychiatric and gastrointestinal origin.”
   ↩︎
3. Hamberg et al (2002) found that both male and female physicians contributed to the gender differences in diagnosis and treatment of a fictional patient with neck pain during a written examination. This may suggest it was in fact an unexamined internalized belief that was at root of this woman-on-woman discrimination. On the other hand, it is possible that interns participating in the exam anticipated possible biases of the examiners and acted on the assumption that the questions are loaded.
   Hamberg K, Risberg G, Johansson EE, Westman G. Gender bias in physicians’ management of neck pain: a study of the answers in a Swedish national examination. J Womens Health Gend Based Med. 2002 Sep;11(7):653-66. doi: 10.1089/152460902760360595. PMID: 12396897. ↩︎
4. Zhang L, Reynolds EA, Ashar YK, Koban L, Wager TD. Gender Biases in Estimation of Others’ Pain. Journal of Pain. 2021;22(9):1048-1059. doi:https://doi.org/10.1016/j.jpain.2021.03.001
   ‌ ↩︎
5. Wessely S, Nimnuan C, Sharpe M. Functional somatic syndromes: one or many? Lancet. 1999 Sep 11;354(9182):936-9. doi: 10.1016/S0140-6736(98)08320-2. PMID: 10489969. ↩︎
6. The practice of discrediting people as knowers based on their social identity (Fricker 2007) ↩︎
7. “Common myths included the belief that FND is a psychological disorder and that patients feign symptoms.” in:
   Al-Sibahee EM, Hashim A, Al-Badri S, Al-Fatlawi N. Myths and facts about functional neurological disorders: a cross-sectional study of knowledge and awareness among medical students and healthcare professionals in Iraq. BMJ Neurol Open. 2023 Sep 30;5(2):e000470. doi: 10.1136/bmjno-2023-000470. PMID: 37794883; PMCID: PMC10546105. ↩︎
8. “More recent work shows that a history of adverse life experience and psychological comorbidities are commonly seen in this population, but they do not occur in all patients, and even when present may not be relevant. […] FND is a complex and heterogeneous disorder, with multiple potential biological and psychological causes and mechanisms that vary hugely between patients and which challenges conventional dualistic assumptions about the brain and mind.
   Lesson: Psychological factors are one of many possible risk factors for FND and should not be considered the sole etiological cause.” in:
   Ten myths about functional neurological disorder
   Lidstone, S.C.; Araújo, R.; Stone, J.; Bloem, B.R.
   2020, Article / Letter to editor (European Journal of Neurology, 27, 11, (2020), pp. e62-e64)
   ↩︎
9. “Another myth is that FM is a masked depression or an affective spectrum disorder. […] However, not every patient with FM is depressed and not every patient with depressive disorder reports chronic widespread pain.” in:
   Häuser W, Fitzcharles MA. Facts and myths pertaining to fibromyalgia. Dialogues Clin Neurosci. 2018 Mar;20(1):53-62. doi: 10.31887/DCNS.2018.20.1/whauser. PMID: 29946212; PMCID: PMC6016048. ↩︎
10. Excerpt from: Foucault M, (1975) Discipline and Punish: The Birth of the Prison. Vintage books. 1995. Print. ↩︎
11. Irving G, Neves AL, Dambha-Miller H, et al
    International variations in primary care physician consultation time: a systematic review of 67 countries
    BMJ Open 2017;7:e017902. doi: 10.1136/bmjopen-2017-017902 ↩︎
12. Smith-Bindman, Miglioretti and Larson (2008) list patient-generated demand, physicians’ fear of malpractice lawsuit and repeated surveillance among certain groups of patients as some contributors to dramatic increase in CT and MRI rates in:
    Smith-Bindman, R., Miglioretti, D. L., & Larson, E. B. (2008). Rising Use Of Diagnostic Medical Imaging In A Large Integrated Health System. In Health Affairs (Vol. 27, Issue 6, pp. 1491–1502). Health Affairs (Project Hope). https://doi.org/10.1377/hlthaff.27.6.1491 ↩︎
13. Professed intentions of liberal democracies are often different from what you can read between the lines. ↩︎
14. The Cognitive Behavioral Therapy Market Size was valued at USD 6.69 Billion in 2023. ↩︎
15. Williams, A. C. de C., Fisher, E., Hearn, L., & Eccleston, C. (2020). Psychological therapies for the management of chronic pain (excluding headache) in adults. In Cochrane Database of Systematic Reviews (Vol. 2021, Issue 11). Wiley. https://doi.org/10.1002/14651858.cd007407.pub4 ↩︎
16. Williams, A. C. de C., Fisher, E., Hearn, L., & Eccleston, C. (2020). Psychological therapies for the management of chronic pain (excluding headache) in adults. In Cochrane Database of Systematic Reviews (Vol. 2021, Issue 11). Wiley. https://doi.org/10.1002/14651858.cd007407.pub4 ↩︎