Medical Trauma: Gaslighting and Continuous Traumatic Stress Eating Away At Your Self-Worth
Healthy people have a string of magic words they offer when someone is struggling with chronic health problems: “Go see a doctor.” I’ve lost count of how many times I’ve even heard “Call an ambulance”. For those acquaintances, healthcare is something you can just summon with a phonecall, almost deceptively easily, like calling a cab. Sometimes I’m almost shocked to be reminded that when the average person develops a new symptom, they call a doctor. In my chronic illness bubble, there are several reasons why someone might not do this, and the number one for many people isn’t even money, but trauma.
Being sick can be deeply traumatizing in multiple ways. It can be traumatic to lose cognitive function or to be in constant agony, not to mention worrying about impending homelessness or wondering if you’re dying. Trauma is difficult to tease apart from fear, worry, stress, guilt, shame, self-doubt and grief. Most people with long-term illness likely live with a mixture of these. At the same time, it may feel like the word “trauma” refers to something awful that took place in the past, while this is our current reality. This is an important point that I return to later in this article.
While the physical and mental symptoms cause an immense toll, still the worst trauma in being sick is often caused by other people’s reactions. Our friends abandoning us or suggesting we will get better with yoga, family members complaining we are being overly dramatic and should get over it already. Being ghosted by a date. Being fired or having to quit school. Being rejected from disability benefits. The insurance company turning down a new treatment approach. An endless string of painful experiences.
For many, the most damaging part of it all are the responses from medical professionals. We expect them to help us, to make us feel better, but too often we find them talking over us, accusing us of being too sensitive, writing derisive comments in our notes, and suggesting we don’t know our own bodies. Using modern terms for hysteria. Refusing diagnostic tests, declining our referrals, taking away our painkillers, coaxing us into therapies entirely inappropriate for our condition. It is terrifying, as our survival may depend on them.
Is It Really That Bad?
Abled people often struggle to grasp the extent of damage this can do. Why would doctors treat their patients with contempt? Everyone has a bad day every now and then, but surely there can’t be such an overarching pattern of maltreatment? For someone without chronic conditions, seeing a doctor may be just another appointment in their calendar. For a chronically ill person, it may be about life and death. They may have waited for it for a year, compiled a folder of symptoms, practiced possible discussions, set up a GoFundMe, perhaps traveled to a different state or country. The stakes couldn’t be higher.
Disability activist Brianne Benness puts it well in her Twitter thread: “Sometimes I feel like we need to talk more about medical trauma and less about internalized ableism.” But while medical trauma can contribute to the internalization of ableism, internalized ableism is often a driving force behind medical trauma, as well. Society sends us the same message via multiple means; physicians who gaslight their patients is one of them. And the main reason for such gaslighting is the ableism deeply ingrained in society. That is the overarching pattern. (Besides some toxic behaviors originating from the medical culture, such as the reluctance to apologize or to say “I don’t know.”)
Gaslighting has become somewhat of a “fad” term, but patients feel it encapsulates well a large portion of trauma from medical interactions. Symptoms of illness are blamed on stress, parenthood, worrying too much, paying too much attention to your body, or spending too much time on social media. Being too young or being too old. Anything else but being seriously ill.
We may be told we don’t appear as sick as we are claiming to be, that our bodies are lying. A recent study analyzing the provocative — and no doubt empowering — Twitter hashtag #DoctorsAreDickheads found that the main reason patients felt their doctor was a “dickhead” was the disbelief they had endured from them.
The most important job of a clinician is to listen to the patient, and it’s not just patients feeling they fail at this. Two oft-quoted studies have found that doctors tend to interrupt patients after just 20 seconds.
Research of Medical Trauma
Of the 20 books on trauma I have read, only one had a section about medical trauma, but it felt disappointing for the same reason most texts on the subject disappoint me. There is a decent amount of research on medical trauma/medical PTSD and a few books dedicated to it, too. Unfortunately, they almost always refer to something quite different from what people with chronic illness mean by it.
In medicine, the term “medical trauma” (when it is not used to discuss physical trauma, i.e. injury) generally refers to the aftermath of ICU treatment, burns, heart attack or cancer treatment. Something that severely threatens your existence or at least bodily integrity. That is obviously traumatizing, but not the only way medical interactions can wound people. Even an itchy scalp can lead to medical trauma, if the doctor acts curtly and dismissively.
I’m only aware of two research papers done on medical trauma in the context of chronic illness. One is a Ph.D. thesis by Andreea Tamaian from the University of Regina in Canada, published in 2015. I’m sure many patients can identify with the sentiments the study participants discuss, such as hurt, distrust, anger, helplessness and disdain.
“Many participants commented on feeling “upset,” “very hurt” and “betrayed” by their interactions with medical providers. One participant stated: “I felt very sad about how I was treated,” while another indicated that he or she “felt hurt…sad… depressed.” Moreover, some participants commented on feeling “betrayed and that no one cares. Receiving “no respect” from the provider or the medical system was a comment shared by most participants.” (Is it any wonder we feel disrespected and unheard by someone who interrupts us after 20 seconds?)
Tamaian’s paper classifies medical trauma as institutional betrayal, a type of betrayal trauma. When instead of helping, doctors call into question the existence of our ailments or whether they require treatment, we feel hurt and betrayed. There is an element of broken attachment similar to parental neglect, but also a sense of being betrayed by a whole hospital, whole healthcare system or even medicine as a whole. Damage caused by gaslighting in general is also classified as betrayal trauma. Betrayal is a powerful word, but it ignores the way medical trauma also affects our identity and wears us down. When similar interactions transpire time and time again, it’s more serial abuse than betrayal.
I’ve only been able to find one other paper discussing medical trauma from the perspective of dismissive interactions, published in 2020. This study was done on patients with SLE (lupus) and it focuses more on the loss of self-confidence and trust in the medical profession. “Several participants discussed medical Post-traumatic Stress Disorder (PTSD), usually from cumulative negative medical experiences, especially misdiagnoses, dismissal of symptoms and feeling endangered from lack of physician knowledge. One likened the psychological state created to that of a ‘’rescue pet’’, constantly anticipating neglect and mistreatment.”
Types of Trauma
Most general literature on trauma divides it into two major types. Simple or type 1 trauma is caused by an isolated incident, such as being in a car accident. Complex or type 2 refers to a continuum of multiple trauma, like living in an abusive relationship or with abusive parents. Not everyone who experiences a potentially traumatic situation is traumatized by it, but type 1 can lead to post-traumatic stress disorder (PTSD), while type 2, especially occurring in childhood, may cause complex PTSD (cPTSD), which also affects the development of personality. Trauma is also considered a risk factor for most other psychiatric illnesses, but that falls out of the scope of this article.
A helpful concept used in some psychotherapy literature is “trauma with a small t”, also called psychological microtrauma. This refers to a seemingly minor occurrence continuing to negatively influence our thoughts or behavior, especially when such events accumulate. An example would be a disparaging comment on your appearance having lasting effects on your self-image and decisions you make, e.g. choosing a haircut or avoiding beaches. Or a parent calling you lazy, making you reluctant to say no to others to avoid being seen as lazy. Even if those events may not lead to full-blown trauma, such long-term consequences on your life would not be insignificant.
Some authors have suggested that the accumulation of microtrauma can, in fact, lead to PTSD. I’ve witnessed something reminiscent of this in some people I know, and it can be a very confusing situation to be in. How can I feel traumatized when nothing really bad happened? My dad always meant well, my boss was not a bully, why do I still hurt? But trauma is purely your subjective experience, there is no international panel of experts judging it. Your mind is the expert panel for your experience.
I’ve met many chronically ill people who feel they have developed PTSD or even cPTSD because of medical interactions, while relatively few have been able to get an official diagnosis of medical PTSD. Many people with healthcare-related trauma are too traumatized to even seek psychiatric care or lack the funds to do so.
Besides simple and complex trauma, there is also a third, less often discussed type of trauma, which I feel is highly relevant to chronic illness, likely more so than the concept of PTSD. It is trauma that is ongoing and known as continuous traumatic stress (CTS). In some sources, the acronym refers to a continuous traumatic situation, as by many authors it’s not considered to be a mental health issue, but a normal response to highly unsafe living conditions. Most studies on continuous trauma have been done in areas with ongoing conflict, but that does not mean that only those people can develop CTS, there is just a scarcity of research.
The difference between PTSD and CTS is crucial, even though some trauma literature conflates CTS with cPTSD. Ordinary trauma, whether caused by a single incident or multiple ones, is a past assessment of unsafety that generally has ceased to be true. Some parts of your brain are stuck to the past. On the other hand, continuous trauma is more about our current life and the future than the past, and it is not an inaccurate assessment. Even if we experience flashbacks, we tend to be much more frightened by future medical care. We don’t have post-traumatic stress, we live among constant trauma.
Reading Unlocking the Emotional Brain made a big impression on me, and it has been called one of the most important modern psychotherapy books. It attempts to explain the mechanisms behind psychotherapy with neuroscience, describing a highly useful concept called emotional learning. We can know something rationally (e.g. that we are valuable human beings, we are not lazy, or that fibromyalgia is a real, disabling illness), yet we can have emotional learning that contradicts it and feels more real to us.
Mere affirmations are rarely enough to undo emotional learning, it has to be something more tangible. Unlocking the Emotional Brain postulates based on some studies that all psychotherapy works by experientially contradicting emotional learning with opposite material — it makes us feel the contradictory information. According to this concept, all different types of trauma therapy (including EMDR) help integrate the sense of past unsafety with contradictory knowledge of safety, usually based on the individual’s current life, but in some cases, it may be an imaginary revisiting of the original traumatic situation.
In my own case, my mother and former partner were both physically violent, but I am safe from further harm by them. As a result, I’ve been able to heal those traumas on my own by using the current state of relative safety as contradictory knowledge, applying psychotherapeutic techniques such as Internal Family Systems and Coherence Therapy. (Working alone is not advisable in all kinds of trauma, e.g. cPTSD.) I am safe from violent people of my past, but I am not safe in medical care. As most people with chronic illness can attest, it is highly likely that I will suffer further abuse.
Consequences of Medical Trauma
Being treated with disdain can have many negative effects. It may wound our identity, leading to self-doubt and feelings of low self-worth. Others’ reactions to medical trauma often mimic the original traumatic situations: it is disbelieved or belittled, called overreaction. It may even be used to minimize our illness: if we were as ill as we claim to be, surely we wouldn’t care about some rude words?
The currently popular narrative of resilience is sometimes used to imply that if we only were stronger and more resourceful, we would not be traumatized. But even the most resilient person has a limited supply of resilience, and our daily struggle with illness and all its related issues and complications quickly drain it. Resilience isn’t enough, when our survival is under threat.
Being a woman or belonging to a minority, such as being a person of color, autistic or otherwise neurodivergent, LGBTIQ+ or fat, increases the risk of enduring abuse in healthcare contexts, just like in other contexts of life. A large part of the discussion of medical trauma revolves around medical sexism, with some entire books dedicated to the subject, such as Maya Dusenbery’s Doing Harm and the older Preventing Misdiagnosis of Women by Elizabeth A. Klonoff and Hope Landrine. While women’s problems are no longer blamed on “wandering womb”, they may be pinned on hormonal fluctuations, pregnancy, being a busy mother, perimenopause or menopause.
The minority and gender connection to healthcare trauma was also reported in Andreea Tamaian’s paper. It also found a correlation between young age and a higher incidence of medical trauma. Interestingly, among the study participants, women experienced more institutional betrayal, but men with medical trauma appeared to be more likely to suffer dissociative symptoms.
Minority stress may also make patients more likely to be traumatized by unpleasant medical interactions. Trauma compounds trauma, and microaggressions, gaslighting and concerns like fear of police violence tie into the same systemic trauma they often face from other institutions and the society at large. Minorities are also more likely to have encountered previous physical, sexual and verbal abuse.
Another aspect that makes medical trauma particularly pernicious is the way we may be forced to face our abuser and pretend nothing has happened. Even if we manage to cut them off, their pointed comments may stick in our medical files. Many patients are too fearful of their future care to file an official complaint, which could also compound the label of “difficult patient”. Andreea Tamaian’s study quotes a participant: “I was recently told by my new doctor that […] doctors are being told to never take on a patient who has ever made any type of complaint, that we are high risk troublemakers and are prone to sue.”
Medical trauma can lead to avoidance of care. I felt very validated by some quotes in the paper on SLE patients mentioned earlier. “Persisting insecurity and distrust were found to be potentially linked to multiple negative healthcare behaviors, especially under-reporting and healthcare-avoidance. This included those with multiple organ involvement avoiding healthcare for potentially life-threatening symptoms: ‘’Psychologically it would be much better for me to never see another doctor…It makes me wonder how many of us have just walked away and died’’ (Ppt 5, Female, 50s)”. Tamaian’s paper also included similar findings. Some of my abled friends have been shocked to hear I have avoided medical care in life-threatening situations. For my chronically ill friends, it’s just another Wednesday.
Another issue discussed less often is the tendency to cling to medical providers who treat us nicely, even if we feel they are uninformed or inexperienced with our illness. We prefer a person who seems kind yet unhelpful to someone who presents a higher risk of abuse. At a specialist clinic in a foreign country, I once chose to return to a very sweet doctor with whom there was a language barrier, rather than one who had treated me brusquely, but spoke better English. I suspect some patients choose approaches that attempt to maximize the provider’s liking of them (e.g. sticking with a treatment that is not helping) to avoid further trauma, instead of ones they believe would be the most beneficial for their health.
Pitfalls of Trauma Therapy
Some people I know have managed to process their healthcare traumas with the help of a therapist or on their own. Psychotherapy may be particularly helpful in cases of isolated problematic interactions, or if trauma from medical maltreatment is exacerbated by things that are clearly in the past.
Attempting to treat continuous traumatic stress with psychotherapy carries two major problems, however. One is that the patient may feel misunderstood, minimized and gaslit. If the therapist tries to address continuous traumatic stress like PTSD, suggesting that the threat is no longer real, and that any experience to the contrary is imagined, it is exactly the kind of attitude that can create and worsen medical trauma. The risk may be heightened if a type of therapy is used that labels certain thoughts “maladaptive”, such as cognitive behavioral therapy (CBT).
Another issue is the danger of bringing partially suppressed trauma to the forefront of conscious thought without being able to integrate it. Psychotherapy can temporarily destabilize a person by having them confront disturbing content that has been suppressed. If the material can be processed, as past trauma often can be, that destabilization is temporary and not unusual in therapy.
This is a big if in chronic illness. When your life is a constant struggle, avoiding mulling over it tends to be one of the main coping mechanisms. Much of self-help literature revolves around the idea that even the most painful emotions must be fully explored, and that suppressing and blocking them is always damaging, but this is far from applicable in all conditions. Distraction and escapism aren’t inherently bad, while in difficult circumstances denial can be adaptive and helpful.
Does that mean that CTS is untreatable? I wouldn’t go as far as stating that, but the options are limited — and if we go with the definition of “continuous traumatic situation”, it makes even less sense to think about it as an ailment amenable to psychiatric treatment, rather than the conditions of our life, where we have to try to reach some sort of acceptance.
Healing from Medical Trauma
Trauma tends to rob us of our feeling of agency, the ability to feel like an active actor in our life — of course, chronic illness by itself can also do this. Medical trauma is even more prone to that, as we may feel we have no choice but to continue facing our abusers. Things like participating in patient activism, when possible, help us reassert our agency and also find meaning in our traumatic experiences. Interacting with others struggling with continuous trauma can also provide these benefits, especially in the context of an intimate community.
Besides acceptance and agency, I feel like self-compassion based approaches might be beneficial, as they can help us restore our diminished sense of self-worth. This can include some practices originating from Buddhism such as mettā meditation, which focuses on warm loving-kindness for yourself and others, and tonglen, sending compassion for a specific kind of suffering of yourself and others. Again, finding a welcoming community for shared practice may be highly valuable.
Janina Fisher’s book Healing the Fragmented Selves of Trauma Survivors: Overcoming Internal Self-Alienation is based on Internal Family Systems, which I believe is an excellent method for healing past trauma. Her book places even more emphasis on self-compassion and also integrates elements from sensorimotor psychotherapy, a type of trauma therapy. IFS rejects the concept of “maladaptive” thoughts — even trauma was created by your mind with its best intents, to protect you.
As an anecdote, another type of meditation, vipassanā (mindfulness), has also helped me see through the internalized ableism I carry and through some of the aftereffects of gaslighting I have encountered. Obviously, I’m not going to suggest that meditation is a viable approach for everyone, and particularly mindfulness meditation can in some cases even exacerbate trauma.
We come from different backgrounds, with different minds and life experiences. At one point, I found it helpful to send loving-kindness to abusive medical professionals. Someone else might find it cathartic to make a voodoo doll of a doctor. Neither strategy is inherently better than the other, what matters is that it helps you cope, heal and know you are not at fault. The realization that medical trauma is sadly so common as to be normal — and viewed through the lens of a continuous traumatic situation, not pathological in any way — may hopefully offer some comfort in itself.
You are not overreacting, neither to your symptoms nor the abuse you’ve endured in the medical system or elsewhere. You are worthy of helpful medical treatment even if you are not currently receiving it, and even if you don’t feel safe engaging with the medical system. You deserve to have medical professionals treat you professionally, kindly and individually. You don’t have to be a “good patient”, you are good enough as it is.