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Ιατρικό gaslighting, ιατρικό τραύμα και ιατρικό μετά-τραυματικό στρες

«Στην προσκόλληση ενός ανθρώπου στη ζωή υπάρχει κάτι ισχυρότερο από όλα τα δεινά του κόσμου. Η κρίση του σώματος είναι τόσο καλή όσο και του νου και το σώμα οπισθοχωρεί από την εξόντωση. Αποκτούμε τη συνήθεια να ζούμε πριν αποκτήσουμε τη συνήθεια να σκεφτόμαστε.» Αλμπέρ Καμύ

«Δεν υπάρχουν άνθρωποι χωρίς φωνή, υπάρχουν μόνο οι σκόπιμα φιμωμένοι, ξέρετε, ή αυτοί που σκόπιμα δεν ακούγονται.» Αρουντάτι Ρόι / Arundhati Roy

I have written about or referred to medical trauma, and gaslighting in personal relationships and larger social contexts, like education or the media, over the years, but I don’t think I’ve ever written anything about gaslighting in medical contexts. Today’s post explores the issue of medical gaslighting, trauma and gatekeeping through the presentation of a non-fiction book, Medical Gaslighitng, by Ilana Jacqueline. And also, while reading the book I listened to and read some additional relevant material, and so I will be making references to this material, too. Finally, I haven’t included any personal experiences in this piece because the post is quite lengthy as it is.

Before I continue, I’d also like to say at the get go that I consider the field of medicine and the huge progress it has made as greatly contributing to the quality of the lives and longevity of everyone on the planet that has access to some level of medical care and health information. I also have a lot of respect for physicians and health providers. They save lives, stop the progression of diseases, relieve pain, and ideally also provide preventive care. The work physicians do is both valuable and demanding, and also they are required to invest a lot of time, effort and money in order to become physicians. I feel gratitude for the times loved ones or myself have received health care, sound advice or came out of surgery rooms alive. Finally, I also have a lot of respect for doctors who offer humanitiarian aid to people in great distress like poverty stricken areas, war zones, and so on. It is an important and useful profession, especially when it is also experienced as a vocation.

However, there are also inherent inequalitites, gatekeeping processes, unhealthy power dynamics, biases and hierarchies embedded within the medical system as in all areas of society. Additionally, we are all hard-wired to judge, and doctors are no different from the rest of us in this respect, but this tendency and capacity can often result in stereotyping and biased thinking, and when this happens in medical contexts the consequences can impact the quality of care that is provived. Physicians and health providers are human like the rest of us with conscious and unconscious biases, ideologies, interests, values and cultural influences, traumas, personalities and problems, and all these factors can influence and impact the quality of the care they provide. Like in any professions there are individual differences, not all mental health providers are alike, and some are more competent, compassionate and conscientious than others. Finally, it is important to remember that bias isn’t just individual; it’s embedded in research, organizational cultures, policies and guidelines, and societal norms. Therefore, changes need to take places both at a systemic level and at a personal level during patient-doctor / nurse interactions.

Ilana Jacqueline’s book is a practical guide to help patients, mostly women, deal with medical bias or neglect in medical contexts, so as to be better able to get the care they need and deserve. She writes: “this is the essential guide for defending against a medical and societal system that was not built to bear the burden of women who want to be well.” Jacqueline situates her own experience and begins by informing us that a delayed by 19 years diagnosis, which she should have been given at birth for a serious condition related to her immune system, would have saved her from so much physical pain, suffering and loss. The outcome of her life would have been different. She also brings in expert information and advice, and stories by women, who confronted medical gaslighting, eventually received diagnoses and appropriate health care, and have lived to tell their stories. Jacqueline also notes that even though today more people might be aware of the reality of medical gaslighting and gatekeeping, awareness alone is not enough. Her book provides guidance to help increase confidence to advocate for and take control of one’s own health or that of a family member. She discusses ways to master the ability to ask questions, and request information, a diagnosis or a health plan, and how to be mindful of the signs, language and behaviours of medical gaslighting and recognise medical bias.

She claims that for women the possibility of experiencing medical gaslighting, which means having their concerns and symptoms being ignored or dismissed or psychologized, information being withheld, or their being infantilized and made to feel small, or not receiving a diagnosis or treatment plan, has always been real and higher with dire consequences ranging from women avoiding physicians and medical contexts to delayed or multiple diagnoses, deterioration of health and death. She adds that statistics and studies have shown that being a woman of colour, transgender, gay, disabled, over weight, elderly, poor or an immigrant, can compound this further, but she clarifies that ultimately anyone can experience medical gaslighting, especially in an overburdened health system.

In her early chapters Jacqueline discusses the need for a guide to navigate the health system, defines medical gaslighting and explores causality and its serious consequences, writes about how to recognise it and discusses medical bias in some depth. In the second part of the book she explores ways to prepare for appointments, how to respond to medical gaslighting and how to take action after it has occurred, how to survive in the aftermath of medical gaslighting, pain management, medical trauma and medical post traumatic stress.

She begins by explaining that much like herself, the women she interviewed for this book had no idea about the silent dangers of medical gaslighting and how their blind trust was leading them off cliffs they didn’t know existed. Many of them also wondered what might have been if they’d had someone out there to warn them and guide them, and they also wondered if sharing their stories could stop history from repeating. She notes that medical gaslighting is an experience where the patient is “beholden to someone in a position of power who does not have [their] best interests at heart,” which can be the result of many factors, but irrespectively of whether the cause is bias or belligerence, it is still real.

She explains that the definition of medical gaslighting is broad and encompasses multiple tactics, patterns, and motives, and highlights its most common forms.

Purposeful obstruction might look like when a patient’s care is deliberately impeded by a healthcare provider who provides incomplete or misleading information in a patient’s file or other communication about the patient, or does not explain test results or recognises a diagnosis in a patient, but does not inform the patient of the diagnosis. Medical negligence describes a situation in which a patient receives inattentive care, or is not given a diagnosis or treatment or the necessary testing for a suspected diagnosis. She writes: “The alarming reality is that doctors have the power to withhold diagnostics and treatments that can save your life. They can mark your medical records with notes that will make future doctors treat you in the same way.” It could also involve health providers manipulating the power imbalance, discrediting, for instance, the patient’s observations and concerns or refusing to answer questions.

Medical gaslighting, Jacqueline writes, also includes treating patients with bias based on their age, gender, sexual orientation, religion, ethnicity, financial status or class, weight, appearance, lifestyle, disability, and allowing this bias to impact the quality of care provided. Jacqueline provides examples, noting that one of the most concerning areas for medical bias and gaslighting, for instance, is in the care of Black women during pregnancy, labor, and delivery. Statistically, she writes, “the USA is the most dangerous place in the developed world to be a pregnant Black woman.” Also, some medical information is based on theories, inadequate data or data published in the past. For instance, she tells us that there were theories and studies that claimed that Black patients do not need skin care or sunscreen, have lungs that need to be strengthened by heavy labor to perform adequately, or feel less pain than white people.

It can also involve claiming a patient is not being truthful about their level of pain, blaming their perception of pain or explaining their symptoms as psychosomatic, anxiety or other psychological conditions. Also, it might take the form of shaming patients (read more on shame below) or withholding information, which robs the patient of choice, interferes with patients’capacity to seek approapriate help and create a plan of action, as well as, the process of consent. She writes: “You are robbed of your consent—by being purposefully obstructed from getting the information you need.”

Jacqueine delves into the causes medical gaslighting occurs, which are complex and varied. She writes: “In the quest for compassion, care, an accurate diagnosis, and timely treatment, doctors have to fight a variety of factors that lead them to consciously and unconsciously gaslight their patients—and particularly their female patients.” These factors include historical misinformation, the gender knowledge gap, the current limits on our understanding of the human body and disease, implicit and explicit biases, sexism racism, and other -isms, the inherent power imbalance in the patient-physician relationship, an overburdened medical system that encourages the bare minimum, and more.

She begins with the reasons why women have historically been medically gaslit and why misinterpretations of women’s health go way back for centuries, and how women have “been trying to work [their] way out from under the rubble of rumors and best guesses from everyone from great philosophers to religious zealots to politicians with big agendas.” This started, she writes humorously, with the Greek physician Hippocrates, who invented the theory of the wandering womb, and adds that the fact is that many theories that have shaped what we understand today about women’s overall health have really just been theories: “unproven, under-researched, and based on centuries of best guesses that inform the way we’re judged when we dare to be anything anything less than perfectly well…,” and content. Also, she adds a lot has been attributed to women’s overactive brains, and symptoms have at times been explained away as a punishment of God, or as the consequence of their imperfect biology.

Referring to medical research she notes that the medical world was built with the able-bodied, 154 pound (περίπου 70 κιλά), white man in mind. Otherwise, she comments, “you’re just too complicated, too expensive, and too time-consuming to be included in research.” The human described above is also known as “The Reference Man” and he came into being in 1975. She writes: “This “perfectly average, “ideal” human has since shaped the standard for the studies that were given the stamp of approval for use on all humans: male, female, intersex, able-bodied, disabled, underweight, overweight, and of various ethnicities and ages. As you might guess, this radical lack of inclusion in medical research brought with it a fair amount of disaster.” She provides historical examples, one being the better known originally safe marketed drug, thalidomide, for both men and women in the 1950s and ’60s that had never tested on pregnant women, and which resulted in the deaths of 2,000 children. She concludes that it wasn’t until the 1990s that women in STEM started to undo years of neglect from the medical research community. According to Janine A. Clayton, MD, this “lack of women included in medical research has resulted in our knowing less about female biology and less about how to diagnose, prevent, and treat diseases safely and effectively,” and “the knowledge gap is going to take time to address.”

Despite the tremendous progress in medicine and medical research there is also still so much we don’t know, and we definitely don’t have all the answers. Jacqueline writes that some doctors meet the unknown with enthusiasm and want to test and search, and others turn away or are indifferent. Another factor she discusses is the fact that many doctors are overburdened and pressed for time. She writes: “… good intentions may not be enough to break through the barriers in their way. They may want to give your situation the attention it needs, but can’t,” and “sometimes doctors can’t figure out what’s wrong or how to fix it. They are cogs in a larger system that is designed not to understand you or fix you, but to patch you up, spit you out, and make a profit. Healthcare will always be messy. Insurance issues. No empty beds. Overscheduled appointments. Unavailable technology. A lack of necessary staff. Being a doctor is hard.” Jacqueline refers to the medical system, clinical settings and circumstances in the USA, where she lives and works, but we can find commonalities in many countires, at least in the so called Western world.

She devotes a chapter on the question of whether a bad experience in a medical setting is the result of conscious or unconscious gaslighting, a medical necessity, or simply the result of the inherent problems in the healthcare system in general. She provides a questionnaire to learn to discern the differences, and suggests we make a list of our own bad or traumatic medical experiences to see if we can figure out if they meet the criteria for medical gaslighting or not. She concludes that patients and doctors stand beside each other in the overburdened healthcare system, and that “we don’t get to choose the circumstances of that existence beside each other, but what we can choose is how we treat each other.”

Another factor that plays a role in all this is implicit bias, which in health care settings occurs, says Jacqueline, every time a healthcare provider stereotypes patients, developing an opinion about a specific patient based on similar patients they’ve seen in the past or have been taught about in their training, or learned about through the media. Medical gaslighting, she writes, “is a behavior that is taught and replicated, learned and weaponized.” Medical gaslighting has a symbiotic relationship with implicit bias, and it occurs when mental health providers fail to see a patient as an individual. As mentioned already, these biases could be about a patient’s gender, ethnicity, age, sexual activity or orientation, mental health diagnoses, facets of their appearance or colour, weight and size, education, outlook on life, politics, etc. In medicine, notes Jacqueline,  this can leave patients dangerously typecast, and can practically mean that a Black patient, for instance, doesn’t get the epidural she needs in time, or a young or a slim woman doesn’t get the tests she needs, or a patient in a larger body isn’t offered the same diagnostics a thinner counterpart would.

There is also the important issue of power imbalance in the relationship between health care provider and patient and the fear of authority, especially, as one’s health or life are at stake. Being the patient, you feel vulnerable because each time we seek help for health issues we have to, writes Jacqueline, “cede control of our bodies, surrendering to the idea that we don’t have the knowledge or the authority to fix the problem on our own. We have to put our lives up as an offering for the chance of expert care,” this particular power imbalance can prove life-threatening, since she tells us, a doctor can dismiss us without a diagnosis or treatment plan, can belittle our fears or laugh at our trauma, can withhold important information that robs us of choice and wise decision making, badmouth us in medical records, and make the journey for care a longer and harder one than it already is.

This power imbalance, she explains, is also why we often remain silent or passive in the face of medical gaslighting, and this is also one reason why a lot of women patients turn to alternative health practices, and often expensive and ineffective wellness products, but this works well for those who are already fairly well. She tells her own story not only of her delayed diagnosis of a rare and serious immune disorder that caused her years of suffering and a string of infections and other issues, her later surgeries and chronic debilitating pain and her need for an integrative pain management approach, but also how in her earlier years she was led to believe that alternative therapies could provide cure; however, what she needed was the right medical tests, a diagnosis and immunoglobulin therapy.

She writes about common signs, phrases or ways of communicating that point to gaslighting like insinuating that women are crazy / hysterical or that it’s all in their head or that they’re too sensitive, suggesting they stop working, offering biased conclusions, choosing limited testing or framing symptoms as less severe and impactful.

Jacqueline also discusses how medical gaslighting is sometimes convenient, as she notes, to shut you up, instead of listening to your needs, to make you a last priority in an overloaded system, to make you redraw your boundaries, to make you accept pain instead of remedying it, and as she puts it:  “… the consequences of this convenience aren’t always just one less body in the waiting room. Sometimes they’re just one less body.” Jacqueline reminds us that when we feel exhausted and disillusioned from an accumulation of hurtful experiences and wonder if it is worth defending at the cost of our emotional well-being, we should know that “the consequences of not recognizing, fighting, and working to systemically alter the practice of medical gaslighting are ones that could cost us far more than we might realise. She explains how the impact of medical gaslighting is not just personal, but also systemic, and writes that when women’s health concerns are silenced in one room, it echoes worldwide.

In the book five categories of consequences to medical gaslighting are discussed:

1)  Shame is explored as both a consequence and a tool of medical gaslighting, a strategy in and of itself, which manipulates patients into accepting substandard care. Medical gaslighting also leaves patients harboring poor self-esteem and feeling shame and, of all the weapons one can wield in a war against women, writes Jacqueline, shame is the sharpest and often leads to a refusal to seek medical care. 2) Delayed diagnosis and disease progression. Once patients have expereinced medical gaslighting or trauma they may refuse to seek care from another provider or they may turn to alternative health contexts, which often results in the deterioration of health and a delayed diagnosis. 3) Generational misunderstanding of disease, when a patient is told their disease symptoms are part of the normal course of health, growing up or aging. 4) Diagnosis of exclusion and data pool pollution, which occurs when healthcare providers fail to provide patients with a thorough diagnostic evaluation, and instead compromise with a diagnosis arrived at by process of elimination, and finally, 5) Irreversible bodily harm and death, by means of delayed care, inaccurate diagnosis, or failure to bridge trust with the health system in time.

Jacqueline expands on shame and notes that shame has been used for centuries as a way to control women, who might otherwise have the audacity to ask questions or advocate for their health, and it can be a solution for an already overburdened system. It can make you feel like you need to apologise for existing. She writes: “While you learned shame, others were learning the power of manipulation. They learned that for you to be manipulated, you had to be vulnerable.” She adds that perhaps many of those who exercised the power of manipulation weren’t fully aware what it was they were doing; but they saw the benefits of doing it because shame deterred and silenced. She asks: Can you think of a system that really needs to stem the flow of people walking through its doors? A system that is overburdened, understaffed, lacking the resources needed to respond to demand?

As mentioned above, this process creates in patients, and women in particular, a feeling of hopelessness, doubt and distrust not just in their physician, but in the health system in general; however, she concludes turning away from health care doesn’t fix the healthcare system, and above all, every delayed visit and delayed diagnosis leads to disease progression. For instance, a study showed that women, on average, are diagnosed with cancer 2.5 years later than men. In chapters 7 and 8 Jacqueline goes into some effective ways of dealing with, and responding to medical gaslighting, when this is beneficial for the patient, things one can do to better prepare for a medical appointment and increase the chances of being treated with dignity as a patient, possible fight, flight, or freeze responses to gaslighting, and when these are productive or unproductive, and the importance to not stop seeking care when things don’t go well in medical contexts. She writes that courage is seeking help, especially knowing it may not be given.

She also explores preventive care, the power and predicament of the electronic medical record, (chronic) pain management and falling down the rabbit hole of pain management; however, I won’t refer to all the points made in the book because Jacqueline is exploring the reality in the USA and the American health system, the opiod crisis and pain management, and the way these heath structures are set up there, which might be different or irrelevant in other countries. Chapter 11, in particular, centres on pain and pain management, and the fact that we can’t always detect who is or isn’t in pain just by looking at them, by observing their behaviours and knowing their schedules. Especially women, she writes, are trained and taught from an early age that life goes on, no matter how bad you feel, they “can smile through it, laugh through it, work and converse through it……. they are rushed back to work after C-sections and vaginal births, denied anesthetic for cervical biopsies and intrauterine device insertion, and taught to always show up, because it’s impolite and selfish not to show up for others, even when our bodies don’t show up for us.”

She refers to gender difference and the fact that there is limited research on pain differences between women and men. She does refer to some related studies: For instance, a 2013 study published in the British Journal of Anaesthesia found that women are at increased risk for chronic pain compared to men, a study at the University of Miami found that women’s pain was viewed as less intense and as benefiting more from psychotherapy than men’s pain, and that these pain biases could be an obstacle to getting women the pain relief they need. What is known however is that women are more apt to verbalize their pain, whereas men are taught from a young age to conceal it and to deal with it privately, but these gendered associations around willingness to complain about pain or acknowledge it in front of other people have created a paradoxical effect. When male patients bring up their pain, doctors are more apt to believe them, women on the other hand, are suspected of over-reporting and sensationalizing their pain.

Jacqueline also devotes a chapter on medical trauma, which can happen both in one instant, as for instance, in a procedure that goes wrong, or it can be cumulative from “small cuts” over time, and medical post traumatic stress, which she claims are both worthy of understanding, exploring, and healing from, in order to avoid getting trapped by these traumas, and end up carrying the trauma through each new medical interaction, often making people even more vulnerable to future medical gaslighting. She refers to study findings, and comments that it’s a lot more common than we think, and it can start very young. For instance, according to a study published in the Journal of Pediatric Psychology, nearly 80% of injured or sick children experienced some traumatic stress response following medical trauma, and between 20 and 30% of their parents, and between 15 and 25%of the children experienced persistent traumatic stress. She discusses Trauma-Informed Care and the need for there to be structures and tools in place to manage the psychological impact of a hospital stay or a surgery or a medical crisis, and the need to address the raptures in trust that occur from medical gaslighting. She refers to Dr. Michelle Flaum, clinical counselor, professor at Xavier University, and author of Managing the Psychological Impact of Medical Trauma.

As I mentioned above, while reading Ilana Jacqueline’s book I also listened to talks and read some relevant medical articles, and also, an article in The Guardian by social affairs writer, Hannah Fearn (January / 2024), which focused on a particular patient group in the UK. Fearn writes that many women with endometriosis that had endured years of excruciating pain, and had being gaslit and told by physicians that their symptoms were all in their head or that they had a low pain threshold, lead them to give up seeking NHS treatment. Fearn goes in to some of the causes, and also, how this reality leaves women feeling “angry, fearful, anxious, frustrated and powerless, with many choosing not to seek further care because of the way they had been treated.” She also notes that lack of confidence to request better care or challenge medical experts means that women are more likely to accept the medical discourse and avoid seeking help in future. Both Jacqueline and other writers of thematically related papers claim that men have a tendency to be more confident and vocal and persistent with their concerns, whereas, many women feel like they need to be “good patients”, which means trusting and accepting without questioning and not advocating for themselves.

Fearn writes that endometriosis affects 1.5 million women in the UK (190 million women globally live with painful endometriosis, cited in Jacqueline, 2024), and a study she refers to that looked at the experiences of treatment and diagnosis of a number of patients, revealed that women often spent years in pain before their condition was diagnosed and during this period participants were told that they were exaggerating their symptoms or their pain was dismissed as psychological. Another study carried out by academics at Manchester Metropolitan University found that: women felt “gaslit” by doctors; treatment was subject to a postcode lottery, and patients in rural areas reported having to travel for hours to access a specialist with full training in this condition.

Fearn quotes Dr Jasmine Hearn, senior lecturer in health psychology and lead author of this paper, who said: “The biggest challenge is the disbelief, the dismissal and the sense of shame and embarrassment.Women are expected to tolerate much higher pain levels than men in general, so when women go [to the GP] with extreme pain, they are at that point of desperation and need to be taken seriously.” Furthermore, many women’s health issues are likely to be misdiagnosed or dismissed by doctors as something less critical. In one study (published in Academic Emergency Medicine) it was found that women who went to the emergency room with severe stomach pain had to wait for almost 33% longer than men for the same complaints.

In one paper a physician in the USA notes that medical gaslighting is a known secret in health care that doesn’t get the attention it deserves and that female patients are continuously gaslit about their health. Sometimes, she notes, it is heart disease labeled as anxiety, sometimes pain and fatigue or an autoimmune disorder dismissed or attributed to depression, and so on. Both Jacqueline and physicians mention that unfortunately there’s still a pervasive belief in the medical community that when a woman complains about her health, it’s mostly related to her hormones or it’s all in her head. They note that the word “hysteria” that originates from the Greek word for “uterus” was once a common medical diagnosis for many women’s ailments, and also applied whenever women displayed anxiety, anger and even sexual desire.

There’s an important connection between the mind and the body that needs to be addressed and not dismissed, and pain and illnesses do not always fit neatly into a cookie-cutter category and often require a more integrated approach. Often health issues are complex and need to have a more comprehensive evaluation. However, certain women’s symptoms may be too easily brushed off as psychosomatic from the start, explained away as anxiety, when they could be caused by thyroid issues, hypertension, early coronary heart disease, any one of several autoimmune conditions, etc. Psychologising all women’s health concerns, symptoms and complaints is problematic and can lead to unnecessary suffering and disease progression, late diagnoses and serious increased health risks.

As I wrap up this article I’d like to mention some of the things that have been suggested in the material I’ve been looking at that could improve the situation. Some physicians have suggested expanding the educational curriculum in Schools of Medicine to include sex and gender, because the one-size-fits-all approach to medicine, as discussed above, negatively impacts women’s health. Over the last couple decades, science and evidence have emerged to show how sex impacts various diseases, and yet the health care delivery model lags behind. Dr. Mieres, for instance, explains that there are still gender biases in health care, and that in 2011, she and her colleagues published data that highlighted some of the sex and gender differences in cardiovascular disease testing and diagnosing. Consider how women are almost twice as likely to die after a heart attack.

Another issue is the fact that many women don’t feel empowered to speak up for their health; therefore, instead of reinforcing the convenient idea that they be “good patients,” it is necessary to encourage them to advocate for their health. It is suggested that medicine and care plans should be a dialogue between a provider and the patient. This would help patients feel empowered because they would feel they’re an integral part of the management process. Another suggestion towards better health care is integrated programs or teams that would take more aspects of a patient into account, like their medical history, symptoms, nutrition, gender, lifestyle factors. Physicians who look at the big picture and can imagine what it might feel or be like to be in their patients’ shoes are likely to deliver more empathic and effective health care. Also, it is suggested that if a patient feels like their physician is gaslighting them or not giving adequate time or answers they should seek a second opinion or a more multidisciplinary approach. Also, it is important for women,and patients in general, to realize that their relationship with their physician is based on partnership, not paternalism.  

I will end with the writer’s personal statement:”…… I want to know what it feels like to get the care I deserve without having to give away every meaningful piece of myself.”