‘Paradigms of distrust’: Medical gaslighting leaves patients dismissed and disrespected
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The word “gaslighting” has taken on a life of its own in recent years, being used in the context of interpersonal relationships, political discourse and online chatter alike.
But, really, it is just another name for something that many rheumatology patients have been experiencing for decades.
Source: Priya Fielding-Singh, PhD.
“Gaslighting refers to a form of cognitive manipulation within an interpersonal relationship in which a more powerful person sows seeds of doubt in a less powerful individual, making them question their own perception, judgment, feelings and/or sanity,” Priya Fielding-Singh, PhD, assistant professor in the department of family and consumer studies at the University of Utah, told Healio Rheumatology. “This can occur in different types of relationships and in different settings, including medical settings.”
The term draws its name from the 1944 film Gaslight, and has been known and used among psychiatry and psychology circles for decades. That said, Kenneth G. Saag, MD, Anna Lois Waters Endowed Chair of rheumatology, and division director of clinical immunology and rheumatology, at the University of Alabama, Birmingham, noted that gaslighting is “a relatively newer term,” particularly among clinicians. Indeed, its entry into the larger popular lexicon appears to have been some time in the mid-2010s.
“Not many of us used it even as recently as 5 years ago,” said Saag.
The concept, however, has a long history.
“The phenomenon itself — of discounting patient concerns or underplaying worries — is not a new one,” Saag said. “It has been present as long as medicine has existed.”
The issue is of particular concern in rheumatology, where the diseases often have poorly defined symptomatology. One lupus or osteoarthritis patient can look very different from the next, with multiple demographic or genetic factors, varying rates of disease progression or dissimilar joints or organ systems impacted.
“If you are an oncologist, you can find cancer in tissue, or if you are a cardiologist, you can find structural complications in the heart,” Saag said. “In rheumatology, we are often challenged by a lack of histopathological diagnosis. In our diseases, it is often a constellation of symptoms and lab abnormalities that lead us to a diagnosis.”
As a result, in rheumatology, there is a lot of uncertainty for extended periods of time. Patients may be either under- or over-diagnosed, or not diagnosed at all, or mischaracterized, or simply sent to a carousel of specialists.
“All of this causes a lot of angst and upset,” Saag said.
These feelings disrupt communication between the doctor and patient and get rid of the gaslighting.
Further complicating the matter is that certain population groups — including women, the LGBT community and people of color — have historically had reason to mistrust the health care system. Combine the uncertainty of rheumatology with this type of mistrust, born from systemic prejudice, and the result is that many women and patients from underrepresented communities feel as though they are being gaslit.
Although solutions to such complex structural problems never come easy, emerging experts like Jen Sebring, BA(H), MSc, a research assistant and graduate student in the department of community health sciences at Max Rady College of Medicine, in Winnipeg, Canada, provided a starting point.
“Make a plan,” they said. “Give referrals when and where necessary. Be transparent with your patients. Walk them through your thought process when appropriate.”
From there, it may be possible to begin building the all-important trust that so many rheumatologists describe as the cornerstone of their practice. However, first it may be necessary to gain a deeper understanding of the general concept of gaslighting itself.
‘They Have Not Been Believed’
It is essential to note that although many people who gaslight others do so intentionally, gaslighting does not have to be an intentional act, according to Fielding-Singh.
“It’s important to keep in mind that, in some instances, gaslighting can occur without the conscious intent of the person doing it,” she said.
Part of the issue is that institutional constraints within the context of medicine place pressure on physicians, according to Fielding-Singh. Doctors are often up against a lack of time and resources, which can make those challenging diagnoses even more difficult and less grounded in productive communication.
However, Fielding-Singh added that these constraints are often accompanied by “embedded hierarchies and gender inequalities that provide the terrain upon which gaslighting can flourish.”
The result, according to Fielding-Singh, is that gaslighting becomes not just an interpersonal phenomenon, but a form of what she calls “structural violence.”
That violence can play out in a clinical setting, Fielding-Singh added.
“When we talk about medical gaslighting in particular, compared with general disrespect or maltreatment of patients by providers, we should be sure that we are referring to a kind of maltreatment that constructs patients as noncredible or crazy,” she said. “That’s what makes it gaslighting.”
Through her work as director of Research Operations and Ethical Oversight, Patient-Centered Research at the Global Healthy Living Foundation, Shilpa Venkatachalam, PhD, MPH, has extensively discussed such topics with patients.
“We have a lot of anecdotal conversations with patients on various topics related to their experience with diagnosis, decisions making around management, and treatment of their disease, and several have shared instances about their experiences when either their symptoms were inappropriately addressed, or they have not been believed,” she said.
Sometimes, the “explanation” given to patients was that the symptoms were simply unexplainable, according to Venkatachalam.
“In other cases, we have heard that they were told that their condition or symptoms were primarily psychological, and that there was no medical diagnosis to be given,” she said.
Depression or anxiety sometimes became scapegoats for what they were experiencing, which Venkatachalam suggested was just one type of gaslighting they reported.
For many rheumatic conditions, pain and fatigue are the primary manifestations, two symptoms that are notoriously difficult to assess clinically. This, too, can lead to interactions where patients feel they are being gaslit.
“For example, for a condition like fibromyalgia, there may be a lack of specific diagnostic tests available,” Venkatachalam said.
In fact, the same story can be told for several conditions ranging from chronic fatigue syndrome to various types of arthritis. Sorting out the physical manifestations of the condition from associated comorbidities is a daily challenge for most rheumatologists. Understanding the parameters of that daily challenge may reduce the incidence of gaslighting in any given clinic.
‘Not an Easy Line to Walk’
It is not uncommon for a patient to walk into a rheumatology office after having spent weeks, months or years receiving varied and conflicting information by other providers, according to Saag.
“Many have even been seen by another rheumatologist,” he said. “Sometimes you reach a different understanding or perspective from that clinician of what may or may not be going on with the patient.”
Another complicating factor is that definitions and diagnostic criteria for many rheumatic and autoimmune conditions have changed over time.
“We get more sophisticated in our understanding of the conditions,” Saag said. “Lab and imaging technology evolve; we gather more genetic information.”
In addition, diseases that were once grouped together have been split apart or sub-grouped based on specific manifestations.
“All of this can lead to different diagnoses over time,” Saag said.
The implication is that a patient may feel as though they have been gaslit after receiving multiple diagnoses from different practitioners at different time points, all for the same set of symptoms.
Conversely, Saag acknowledged that despite the technological and regulatory advances, some patients simply have symptoms that cannot be adequately explained. Communication with a patient in this situation requires delicacy.
“It is not an easy line to walk,” he said.
However, an emerging body of data is showing that many patients feel that clinicians fail to walk that line carefully or truthfully.
In a paper published in the Journal of Patient Experience, Vargas and Mahalingam use the term “incivility” as a catch-all for unsatisfactory doctor-patient interactions. They questioned 173 patients to determine experiences of incivility in a hospital setting.
Results yielded six major themes of incivility: Insensitivity, identity stigma, gaslighting, infantilization, poor communication and being ignored.
“The findings highlight that instances of incivility are present in almost all aspects of the patient experience and take on unique forms, given the patient’s role in the hospital,” they wrote.
Clearly, it is essential for rheumatologists to maintain civility with all patients. However, certain groups, historically, have faced even greater challenges in health care settings and may require specific and ongoing attention to prevent gaslighting.
Women are ‘Not Taken Seriously’
In a paper published in Sociology of Health and Illness, Sebring wrote that as the term “medical gaslighting” has arisen, women, in particular, have experienced “invalidation, dismissal and inadequate care.”
According to Sebring, the explanation for this phenomenon is not simply a personal misunderstanding between doctor and patient, “but the result of deeply embedded and largely unchallenged ideologies underpinning health care services.”
“Women often are not taken seriously when they come in with chronic pain or other unexplained conditions,” Venkatachalam added. “They are attributed to psychological problems.”
Fielding-Singh added that gaslighting also often relies on gendered stereotypes of women as “irrational, hysterical or dramatic.”
“These gendered stereotypes that shape medical providers’ views of women patients as less rational, more emotional and more likely to complain than men come from gendered ideology within medical science itself. Theories of male superiority are embedded in biological claims that men are whole and strong, while women are weak and incomplete,” she said.
Fielding-Singh additionally stressed that gaslighting almost always occurs within relationships in which the power is unevenly distributed.
“For gaslighting to be effective, it generally has to be facilitated by an existing unequal power dynamic,” she said. “Usually, the gaslighter holds more power than the victim, often to the point where the victim depends on the gaslighter or cannot exit the relationship.”
As such, a gaslighting situation is “rarely gender-neutral,” according to Fielding-Singh.
“Rather, it is a largely gendered phenomenon, both within and beyond medicine, given the fact that women rarely possess the cultural, economic and political capital required to gaslight men,” she said. “In medicine, the underlying dynamics of power, vulnerability and dependence in the relationship between provider and patient make the clinical encounter an especially fertile arena for gaslighting to occur.”
Further explanation on this can be found in the Sebring paper. Medical gaslighting is “commonplace” not just among women, but also “transgender, intersex, queer and racialized individuals seeking health care,” they wrote.
In short, Sebring suggested that medical gaslighting is the result of health care inequities that are rooted in broader structural and systemic inequities. With this in mind, it is unsurprising that many patients of color also report gaslighting with greater frequency than their white counterparts.
Racism and Distrust
Further findings from Sebring’s MSc thesis showed that Indigenous and Latino participants reported being subjected to racial stereotypes while seeking care.
“For example, one participant was used to having her pain dismissed because of her race, which made her hesitant to seek care at all,” Sebring said.
This anecdote highlights the intimacy of health care interactions, and how frustrated and disappointed patients can feel when that intimacy is violated.
Venkatachalam suggested that these failures in interpersonal interaction begin much earlier than any individual doctor-patient relationship.
“We know, for example, that a lot of medical schools do not teach enough about what psoriatic arthritis lesions may look like on Black or darker skin,” she said.
It may therefore take significantly longer to arrive at a diagnosis for people of color as symptoms are missed because of system-level barriers, discrimination and medical racism, which can contribute medical gaslighting, according to Venkatachalam.
“But of course, it is not always the fault of the physician,” she said. “It is a systemic issue that we need to address. Most physicians want to help their patients and sometimes certain diseases may have symptoms that slowly present over a period of time, or that could indicate other conditions too that need to be ruled out first, along with insurance and access issues that can lead to delays in diagnosis.”
However, the issue is still bigger than that.
“We have to consider that, at the population level, many Black patients have a mistrust of the health care system for a number of reasons, including a deeply embedded historical legacy of exploitation, dismissal and violence in health care,” Venkatachalam said.
The history of how Black Americans have been treated with regard to medicine in the United States is long and sordid. The infamous Tuskegee Syphilis Study is but the most well-known example, but others continue to this day — as of 2020, the maternal mortality rate for non-Hispanic Black women was 2.9 times the rate for non-Hispanic white women, according to the CDC. The result is level of mistrust can play out across the spectrum of health care.
In a 2019 paper published in Behavioral Medicine, Powell and colleagues found that African American men were significantly more likely than their white counterparts to delay blood pressure and cholesterol screenings as well as routine checkups.
“Increasing preventive health screening among African American men requires addressing medical mistrust and racism in and outside health care institutions,” they wrote.
Every provider should be careful about reasserting these “paradigms of distrust,” according to Venkatachalam.
Meanwhile, CreakyJoints has collected what Venkatachalam described as anecdotal data, showing that patients of color, particularly Black patients, frequently report feeling that their pain or symptoms are “dismissed or disrespected.”
However, she also acknowledged that these issues can be complicated.
“We should be very careful here because we work with and know very skilled rheumatologists, dermatologists and other health care providers who care deeply about their patients, who want to listen to their patients carefully, who want to understand and help, but sometimes the diagnostic journey is not as straightforward as we’d like it to be,” Venkatachalam said. “There are enormous challenges from both perspectives.”
Saag offered one solution that may provide a step forward in resolving these specific breakdowns in trust and communication.
“In rheumatology, we clearly have an under-representation of providers of color,” he said.
Efforts are being made to increase the pipeline of Black, Latino and Indigenous rheumatologists, according to Saag. He added that it is essential to provide opportunities for non-white rheumatologists to ascend to leadership and decision-making positions.
“These are fundamental problems plaguing our society that need to be addressed,” Saag said.
If there is another fundamental problem in the United States that may have implications in medical gaslighting, it is increasing rates of mental health comorbidities.
Pain, Shame and Mental Health
In a paper published in Frontiers in Psychology, Boring and colleagues noted that although pain is subjective, “many people have their pain invalidated or not believed.” They drew associations between pain invalidation and poor mental health, including depression and a lower sense of well-being. In their study, they asked participants to discuss times when pain was invalidated not only by family and friends but by medical professionals. They then assessed the association between this invalidation and mental health outcomes like depression or shame.
“Overall, findings indicate that one mechanism by which pain invalidation may facilitate depression is via the experience of shame,” they wrote.
Saag described the interplay between poor mental and physical health as a “vicious cycle.” He suggested that this interplay, again, is seen across the rheumatology spectrum, certainly in conditions like fibromyalgia, but even in diseases with clearer symptomatology like rheumatoid arthritis or lupus.
“The key is to try to interrupt the cycle,” he said. “Addressing the mental health aspect can be very effective at improving the way a patient feels physically, and vice versa.”
According to Sebring, interrupting the cycle could be beneficial in minimizing the feeling of being gaslit. However, this is no easy task, they added.
“You have to consider the broader context of mental health, which comes with its own stigmas,” they said. “So, when a physician says something is psychological, it is read as dismissal. It is a tricky area to navigate.”
Perhaps the best way to navigate this territory is to rely on the fundamentals of medicine, according to Saag.
“Demonstrating to the patient that you are working deliberately through an algorithm to rule out malignancy, infections, inflammatory disorders, et cetera, can have a beneficial impact on how they perceive the care they are receiving,” he said. “At the end of this process, you may have just a few things left or nothing left.”
The message here is that if the patient is still feeling bad physically at this point, then perhaps measures to address mental health issues will bear fruit.
This approach is just one of many possible solutions to manage the problem of gaslighting in medicine.
Practical Solutions
“Many of the conversations I have with patients are not easy,” Saag said. He referenced a refrain echoed by rheumatologists in any context. “It takes multiple visits to establish trust.”
Although establishing trust would seem like a big challenge, providers can often lay the groundwork by simply listening to their patients, according to Saag.
“You have to listen carefully to their specific circumstances,” he said.
Timing is also an important factor, he added. For example, if a patient has been suffering for a long period of time, but there is nothing fundamentally wrong on a physical exam or laboratory tests, Saag noted that telling this to patients can actually be reassuring.
“I try to tell patients, ‘I have seen patients with X or Y disease, and, normally, after this amount of time, they are a lot worse off, so it is unlikely that you have this,’” he said.
Some patients may be relieved by this information. Others may not. Venkatachalam said it is necessary for providers to understand that the way patients communicate what they are feeling is variable.
“It depends on a number of factors, from age and race to educational background,” she said.
That said, the solution to these issues may be straightforward.
“There needs to be more education for providers to be more sensitive to the language and the cultural context any given patient may come from and use to describe their symptoms,” Venkatachalam said.
Regarding the language providers use, Venkatachalam suggested moving away from words like “unexplainable,” “tricky” or “unusual” to describe something a patient is feeling.
“These words are part of gaslighting culture,” she said. “If you are listening empathetically, you will understand that regardless of what the exam or the lab test results say, if they are feeling it, it is part of their experience, and it needs to be recognized.”
Data can help minimize gaslighting, as can technology, according to Venkatachalam.
“There are a number of ways for patients to generate their own information, from symptom journals, like those available in our ArthritisPower app, to wearable technologies that track all kinds of information,” she said.
The thinking is that if a patient can characterize their pain, or if a device can register movement or sleep on a daily basis, the data will tell the story in a way that the patient may not. The data-driven evidence of journal entries and Fitbit numbers can fill the areas of misremembering and miscommunication where gaslighting begins.
The key is time, according to Venkatachalam.
“If we see what a patient is experiencing over time, we can begin to identify patterns,” she said. “Those patterns will help us more clearly identify the issue.”
Every health care provider needs to understand the gravity of a patient going to a clinic and seeking care, according to Sebring.
“For people who have experienced invalidation when seeking care before, they are often quite hesitant to seek care at all,” they said. “People often feel quite vulnerable in doing so.”
Respecting the leap patients have taken and the vulnerability they are feeling from the first contact is critical to minimizing the likelihood of gaslighting, Sebring added.
“What they are experiencing is real and impactful for them,” they said. “It is of the utmost importance to recognize that and try to work with them to come up with a solution, or a plan for moving forward.”
- References:
- Boring BL, et al. Front Psychol. 2021;doi:10.3389/fpsyg.2021.743584.
- Powell W, et al. Behav Med. 2019;doi:10.1080/08964289.2019.1585327.
- Sebring JCH. Sociol Health Illn. 2021;doi: 10.1111/1467-9566.13367.
- Vargas EA, Mahalingam R. J Patient Exp. 2020;doi:10.1177/2374373519878037.
- For more information:
- Priya Fielding-Singh, PhD, can be reached at 201 Presidents Circle, Salt Lake City, UT, 84112; email: priya.fielding-singh@fcs.utah.edu.
- Kenneth G. Saag, MD, can be reached at Faculty Office Tower (FOT), Room 820D, 510 20th Street South, 35294-3408; email: ksaag@uabmc.edu.
- Jen Sebring, BA(H), MSc, can be reached at 66 Chancellors Circle, Winnipeg, MB R3T 2N2, Canada; email: jennifer.sebring@umanitoba.ca.
- Shilpa Venkatachalam, PhD, MPH, can be reached at 515 N. Midland Ave., Upper Nyack, NY 10960; email: jdaitch@ghlf.org.
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