Dr. Ingela Thuné-Boyle
'Medical gaslighting' in chronic illness: When doctors cause harm.
I've read a few articles lately about what people describe as 'medical gaslighting'. What's usually being referred to here is a tendency for some doctors to dismiss, minimize or undermine a patient's health problems. In this blog, I want to look more closely into what's really behind the term 'medical gaslighting'. You'll find that it's actually a little bit more complicated than just plain gaslighting. That doesn't excuse the behaviour, nor does it minimize its effect. Indeed, what I'm about to talk about is extremely harmful to patients. It can cause confusion, self-doubt, embarrassment, shame, severe distress, and even a delay in diagnosis and treatment. This is especially true for people living with a poorly understood chronic illness. However, let's first begin by looking at what we mean by the term 'gaslighting' in the psychological literature.
Classic gaslighting is usually defined as a deliberate, premeditated attempt or strategy to influence another person's perception of reality; a behaviour where the judgement of the victim becomes impaired; where people begin to doubt their own experience, feel confused and distressed. It's usually linked to narcissism and psychopathy where the perpetrators are engaged in manipulation and emotional abuse. It can take the form of denial, misdirection, contradiction, and misinformation with the aim of destabilizing the victim and delegitimizing the victim's beliefs. However, gaslighting can also be unconscious, non-intentional and without malice yet the outcome is pretty much the same. It often happens in a power dynamic where authority is used to diminish a person's beliefs or where a person is shamed into accepting the point of view of the authority figure.
When I was a young woman, I most certainly experienced something within the medical setting that looked and felt a lot like gaslighting. I was in my early 20's and had a lot of health problems as a result of a connective tissue disorder that I was born with. However, my GP refused to take my health problems seriously and instead told me that I was anxious but I wasn't aware of it. There I was, trying to figure out why I was feeling so unwell and why I was in so much pain, but as a young woman, I remember walking home and actually thinking that perhaps he was right. Perhaps I was anxious but wasn't aware of it and it was causing all these health problems. I didn't feel anxious but he was a doctor after all and a senior one at that. So, I ended up feeling stupid and I didn't want to go back, but something didn't feel right so I took a deep breath and plucked up the courage to see another doctor in the same practice. This time, I requested an x-ray. However, this doctor got annoyed and refused my request, snapping at me that nothing would show up anyway. And that was the end of that.
So, a while later and with poor medical management, my sick leave at work was mounting up. At the time, I worked at a large teaching hospital in central London and my boss decided it was time to send me to occupational health - to the infamous Dr. W. In his early 60's, wearing a pinstriped suit and reading glasses stuck to the end of his nose, he was seen as an intimidating force by many but, for some reason, he was always really kind to me. He arranged for me to work part-time on full-time pay for four months so that I could rest. I would go and see him regularly and we'd literary put our feet up on his desk and talk about life in general. He'd tell me stories about his hilarious and very elderly mother and he passed a lot of wisdom my way during these 'consultations'. He also sent a letter to my GP pretty much telling her that there was clearly something physically wrong with me and to get on with it. I'm not sure how that went down but things started to happen.
So, the GP, still very annoyed and convinced that nothing would show up, finally sent me to have that x-ray and, of course, the results were very abnormal; most cervical vertebrae were partially dislocated. I had several areas of disc damage and soft tissue calcifications (they asked me if I'd been in a car crash). I had to have an emergency MRI which they carried out the following day and for the first time, I was treated with an enormous amount of respect and kindness. I had been right all along! But the fact of the matter was, these doctors had almost convinced me that it was all in my head and that lead to a massive delay in diagnosis and several years of untold suffering. It stopped me from going to the doctor because, you see, I was wasting their time, and man, did they make that clear! It caused me to feel angry, frustrated and embarrassed. Indeed, minimization is a form of invalidation and that's also a form of gaslighting. It challenges your reality and if it's coming from a place of authority, it can also be seen as a form of humiliation. Humiliation is abuse.
Patients may lose their confidence in their ability to judge what is wrong with them from this kind of treatment. They may also lose their confidence in doctors and the medical system in general. It erodes trust in the doctor-patient relationship and can have an absolutely detrimental effect on their care and quality of life. Indeed, many patients end up too afraid to bring up symptoms and concerns for fear of being labelled a hypochondriac, somatizer or neurotic. And even if a person is anxious, don't they have the right to be treated with respect and dignity too? Let's face it, living with a chronic illness can be very anxiety provoking and no one should be stigmatized, labelled and dismissed because of it.
Charles M. Blow said, "One doesn't have to operate with great malice to do great harm. The absence of empathy and understanding are sufficient." Indeed, unintentional gaslighting where a person's reality is denied, serves to maintain the doctor's own beliefs. There is no attempt to shift their medical opinion or make any kind of effort to understand what's going on with the patient. In this instance, the gaslighting may also serve to protect their ego and can even be viewed as lazy medical practice; perhaps to prevent them from actually having to face the fact that they simply don't have all the answers. However, I do believe that most doctors don't set out to harm but rather, end up causing harm from a place of ignorance, arrogance or bias. There may also be several psychological, environmental and cultural factors at play. This is a complex area but I will try to summarize some of the reasons, just to give you a general idea of what might be going on. Let's start with cognitive bias.
Cognitive biases are systematic errors in thinking that influence decision making and judgment. There are at least 50 known cognitive biases within medicine and many of these errors can lead to missed or inaccurate diagnoses and patient harm. Some of these biases are based on stereotypes or gender. For example, we know that biases against women and people of color can lead to worse health outcomes in many areas of medicine - pain management being one of them. Another bias is favouring a common diagnosis and thereby missing the uncommon or rare. Indeed, doctors are taught that when you hear hooves, think horses, not zebras. This is understandable as the answer is usually the most obvious and the most common. However, this bias may also lead doctors to dismiss the more uncommon or poorly understood, causing a delay in diagnosis and untold distress and suffering for some people. Indeed, it appears that, when they don't have the answers, doctors may simply assume it's 'all in your head' and that's the end of it. You get dismissed.
Our reliance on cognitive processes prone to bias make treatment errors more likely than we think. It also doesn't help that doctors have to make rapid decisions due to the limited time available to them with each patient. It can therefore lead to unintentional medical gaslighting and harm. However, doctors may believe that, as highly trained professionals, they are immune to these pitfalls but, unfortunately, they are just as prone to errors in their decision making as anyone else. Indeed, it's important to remember that cognitive biases are a universal phenomenon; everyone is susceptible to them including doctors.
There is also the concept referred to as the 'heart-sink patient'. The term 'heart-sink' refers to the doctor's heart sinking when the "difficult" patient enters the consultation room. Some of us have complex medical problems and apparently, that turns us into 'heart-sink' patients. However, those most affected by this perception are those with what's referred to as 'Medically Unexplained Symptoms' (MUS). MUS is a common diagnosis in general practice and I have often wondered how many patients are given this diagnostic label when there may be an alternative explanation. It doesn't help that the DSM-5 manual added a 'somatic symptom disorder' which also risks mislabeling these people as mentally ill. Somatic symptom disorder is diagnosed when a person has a "significant focus" on physical symptoms, such as pain, weakness or shortness of breath, to a level that results in major distress and/or problems functioning. The individual has "excessive thoughts, feelings and behaviors" relating to the physical symptoms. However, most people with a chronic illness who are also having a hard time coping with their illness, would fall under this category, because, you know, living with a chronic illness can be hard! Indeed, it's been argued that the DSM-5 definition of somatic symptom disorder may result in inappropriate diagnoses of mental disorder and inappropriate medical decision making. It also clearly affects the perceptions and behaviours of doctors towards their patients.
It's worrying when previously healthy patients are being dismissed or described as troublesome heart-sink patients, when they are simply reacting with enormous frustration to feeling extremely unwell and not getting the help they need. These patients may even find phrases such as "the patient believes" and "the patient thinks" in their medical records or referral letters. They are also being labelled with attention-seeking behaviours and assorted personality disorders so as to discount and deny credibility of their very real experiences and distressing functional symptoms. People may be labelled as a time waster, treated rudely and dismissively and with a complete lack of compassion or kindness. How is that going to help the situation? Further, when expectations and demands of doctors are high, they can easily become tired, disillusioned and disinterested. That means they become the heart-sink doctor. This can lead to a judgmental and condescending attitude towards the patient when it's actually the physician who is feeling anxious and overwhelmed.
There are also the issues around compassion fatigue. Compassion fatigue can be the result of physical, emotional and spiritual exhaustion from the demands of being a physician. Too much paperwork, too many long shifts, too little sleep and so on, are all stressors that can create a feeling that they can't connect with patients anymore. Depersonalization is another component of compassion fatigue. A certain amount of detachment is needed for a physician's objective functioning; however, when detachment becomes extreme, physicians may lose the ability to connect with patients and cynicism and jadedness may set in. Compassion fatigue is also related to burnout. Burnout comes from the external environment; fast-paced working conditions and long hours. According to a recent Harvard report, physician burnout is a public health crisis that urgently demands action. Half of all doctors report symptoms such as depression, exhaustion, dissatisfaction and a sense of failure. These physicians are also twice as likely to commit a serious medical error. If left unaddressed, burnout may further erode the mental health of doctors and seriously undermine patient care.
Medical education and the health care environment have a tremendous power in shaping medical students and young doctors. However, there is evidence that about half of residents in the USA have also experienced being bullied, most often by their attending physicians. In Canada, 78 percent of residents reported being bullied and harassed in their training, often by attendings or program directors. Bullying tactics within medicine may take many forms such as intimidation, threats of career ruin, belittling, undermining, unjustified criticism, spreading gossip about the resident, work interference or sabotage, blocking promotions or opportunities at other clinical sites and setting trainees against one another. I have worked in the healthcare system for most of my adult life, whether it's on the hospital ward, outpatients, in primary care or in the academic setting so I've seen my fair share of this unfortunately, even among nurses.
Maybe you're now wondering if this toxic culture spills over onto the care of patients. Indeed, there is evidence that it does. Studies have shown that if a resident is distracted by the additional stress of bullying, he or she is more likely to commit errors. General patient care is also negatively affected; bullied trainees may be less empathetic because they’re consistently in fight or flight mode. They may also fail to communicate as effectively with their patients. There is evidence that bullied residents have turned to substance abuse and some become so severely depressed that they may even attempt or complete suicide. In 2017, the World Medical Association issued a statement about the need to address bullying and harassment within medicine. The American Medical Association, the British Medical Association, the Royal Australasian College of Surgeons and the Canadian Medical Association followed suit.
Suicide is estimated to be the second leading cause of death among medical residents. Suicide statistics for young doctors are difficult to track because many deaths go unreported as such. However, 300 to 400 American doctors complete suicide each year - twice the rate of the general population. Studies report that at least 10 to 12 percent of healthcare professionals will also develop a substance use disorder during their careers, including at least 1 in 10 physicians. These numbers are higher than the general population; however, they are probably even larger than this because medical professionals are also notorious for underreporting substance abuse disorders. It is estimated that 10 percent of doctors allow alcohol to adversely affect their overall well-being, health, and medical practices. The American Medical Association (AMA) Code of Ethics requires all doctors to promote personal health and wellness and to promptly inform relevant authorities of an impaired or incompetent colleague, yet, one in three (36%) physicians surveyed in a national poll said they’ve had firsthand knowledge of a physician struggling with drug and/or alcohol misuse and yet did nothing.
A study in the British Medical Journal found that doctors still see their own mental health problems as sign of weakness. Indeed, employers in the medical profession must take steps to reduce the stigma of mental illness among their workforce so that doctors feel able to get help. The recommendation came after a survey of UK doctors, conducted by the British Medical Association (BMA), found that most doctors (80%) were at a high risk of burnout, with junior doctors most at risk. In addition, the BMA found a serious mental health crisis among doctors and medical students. It's now calling for major changes in workplace cultures to help build supportive working environments, with better access to support services and an end to doctors feeling unable to ask for help. However, there's evidence that doctors with depression seeking help in the US may actually get fired. So, this is the environment many doctors work within. All this is beyond unacceptable in my book. Indeed, we need to provide a caring environment for our medical students and qualified doctors so that they can care for us in an empathetic and compassionate way. This is the 'caring profession' for goodness sake!
There are, of course, a small minority of doctors who are highly narcissistic, psychopathic or some combination of the two, and that's where you might come across conscious and deliberate gaslighting. Indeed, some doctors are vulnerable to a God complex and that stem from a narcissistic style or pattern of behaviour. These doctors have an inability to relate to their patients and usually don't show much empathy. They mostly care about their own ambitions. There is very little data in this area but we do know that there is definitely a higher prevalence of narcissism within some professions like medicine (but also politics, finance, clergy, academia, the military and the police force). I've certainly worked with a few over the years and it's never a pleasant experience. However, some of these doctors can also be perceived by their patients as very charming, and the gratitude expressed by patients may actually serve as a form of narcissistic supply. It's therefore not necessarily always a horrific situation for patients to be cared for by a character disordered physician, at least not in the short term. However, should one dare to question or point out a mistake, one may experience rudeness, 'deflection' or 'projection'. Deflection means a tendency to distract attention away from the person doing something wrong while projection means the perpetrator may attribute characteristics they find unacceptable in themselves to another person (i.e. blame you for their mistake). Indeed, narcissistic people are driven by a deep intolerance of vulnerability and shame and may therefore use these 'tricks' as a defence mechanism.
This is a very brief summary of a very complex area but you can see why I believe that people who live with a long-term illness are extremely courageous (I've written about this in more detail in a previous blog you can find here). The medical encounter can be a complex inter-personal experience. It's never easy dealing with a lack of validation, minimization, humiliation and even a degree of indifference, yet patients are forced to expose themselves to that again and again, year in, year out. These types of behaviours can actually be so harmful that it can cause some patients to feel traumatized. It can create anger and resentment that can last for years and to the detriment of the patient's quality of life. If this is you, I highly recommend that you seek professional help from a psychologist or a therapist. Indeed, if you have been treated by a physician that was arrogant, antagonistic, dismissive, entitled, contemptuous, or who gaslighted and invalidated you, know that it is not what medicine should be about. Medicine is a profession that patients' approach from a place of vulnerability and that requires TRUST. Indeed, the core of medicine should be humility; healing happens when the physician is present with the patient, not because they know everything.
I've even heard the argument that patients need to change their expectations; that they ask too much of hospitals and hospital doctors and that hospitals are a place for acute trauma and treatable illnesses. However, I would argue that, to the very least, in general practice and within clinics that treat chronic illnesses (where illnesses are often managed rather than cured), we simply must expect more. Lowering our expectations is accepting the status quo. This is where we can learn a lot from palliative medicine where tending to a patient's dignity is placed high on the list of priorities. When doctors don't know how to help a patient, they can instead focus on validating the patient's experience, show kindness, empathy and compassion. Indeed, the British philosopher and poet Samuel Taylor Coleridge once said, "He is the best physician who is the most ingenious inspirer of hope." I wholeheartedly agree. (I've written about hope in more detail in a previous blog that you can find here.)
Before I finish, I would like to acknowledge all those doctors who try their best even when they're at a loss. Those doctors that work hard, often under very difficult circumstances, yet make their patient's feel validated and heard. Who show kindness, empathy and compassion. You make a huge difference to the lives of your patients because when patients get the validation and compassion they deserve - when their dignity is attended to - it actually creates a path towards healing. It improves the patient's well-being and their quality of life. And if you're a doctor who's at a loss at how to help some of your patients, just tend to their dignity, even if that's all you can do. It really does make a difference. (There is a helpful summary authored by Dr. Harvey Chochinov (BMJ, 2007) on how to go about tending to someone's dignity within healthcare.)
I will finish with a quote by the writer Anatole Broyard on the psychological and spiritual challenges of facing illness: “To the typical physician, my illness is a routine incident in his rounds while for me it's the crisis of my life. I would feel better if I had a doctor who at least perceived this incongruity...I just wish he would...give me his whole mind just once, be bonded with me for a brief space, survey my soul as well as my flesh, to get at my illness, for each man is ill in his own way.”
Have you experienced any of this in your own healthcare? How did that affect you? Please comment below. I would love to hear from you!
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Dr. Ingela Thuné-Boyle is a licenced Practitioner Health Psychologist specializing in stress and loss, especially in improving the quality of life of people living with long-term health problems. She lives with Ehlers-Danlos Syndrome, a connective tissue disorder, and runs a private online (telehealth) practice at www.ingelathuneboyle.com.
Please note: Advice given in this blog is not meant to take the place of therapy or any other professional advice. The opinions and views offered by the author is not intended to treat or diagnose, nor is it intended to replace the treatment and care that you may be receiving from a licensed physician or mental health provider. The author is not responsible for the outcome or results following their information and advice on this blog.
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