Betrayal Trauma

I think a lot about betrayal trauma lately. Specifically betrayal trauma in health care. When most people come upon this term, their reaction is usually an astonished, “There’s a name for that?” because many patients understand this type of trauma but never had the words with which to convey the painful occurance. In fact, it seems all too common in health care, a place where we’re supposed to find help and healing. But because patients have not had a common language to talk about betrayal trauma, we haven’t had all the tools we need to address it. Only through exploring this concept can we start to process the harm caused by betrayal trauma and begin to change health care to address its harmful effects.

What is Betrayal Trauma?

“Betrayal trauma occurs when the people or institutions on which a person depends for survival significantly violate that person’ s trust or well-being” (Freyd. 2008).

As I’ve discussed in my trauma informed care series, there are many different kinds trauma including medical trauma, trauma from abuse, generational trauma, and more (see Table 1 below). Betrayal trauma can overlap with these other types of trauma or be independent from these types of traumas. For instance, childhood abuse is specifically a type a betrayal trauma. However, betrayal trauma can happen separate and apart from or in addition to other types of trauma. For instance, many people of color carry a generational trauma from years of mistreatment and racism, they may also be subjected to institutional betrayal trauma from systems that are endemically racist like policing and medicine. In this way, trauma is unique to each individual and the effects of trauma can become complex.

In general, trauma often goes underrecognized and unaddressed as part of health care but I’d bet betrayal trauma may be grossly overlooked because of how it is inflicted and perpetuated. In the context of health care, betrayal trauma is both inflicted by individual actors (i.e. doctors, nurses, staff, executives, etc.) and at a systems level, which is termed institutional betrayal trauma. According to Freyd, “‘Institutional Betrayal’ refers to wrongdoings perpetrated by an institution upon individuals dependent on that institution, including failure to prevent or respond supportively to wrongdoings by individuals … committed within the context of the institution.” In other words, institutional betrayal happens at the hands of health care organizations that run clinics and hospitals who defend and protect providers who hurt patients, insurance companies that deny care, government agencies who do not hold providers and organizations accountable per their mandate, or policymakers who enact or oversee laws and rules that facilitate patient harm, among others.

One of the key components of betrayal trauma, whether perpetrated at an individual or institutional level, is a break in trust. As Lewis, et. al (2019) write, “The presumptive agreement of the healthcare system is fiduciary trust or the belief that the healthcare system will act in a patient’s best interest and not take advantage of his or her vulnerability…” They go on to explain, “Institutional betrayal occurs when fiduciary trust is broken, the patient’s health-related interests are violated, pain is increased or dismissed, and/or unexpected or unexplained negative outcomes occur.”

Whether individual or instutional, I would bet that betrayal trauma is overlooked is because we often look only for the grand betrayals that cause visible harm. Medical malpractice-level betrayals are overwhelming, but so too are what I call the “mundane” betrayal traumas – those incidents that break our trust but leave us standing, the ones that add up over time and make us deeply weary of the systems meant to heal us.

Patients face betrayal trauma in small, mundane encounters every day from the deeply problematic process of getting records to appealing insurance denials to following up on whether prescriptions are refilled. Patients face doctors who dismiss pain or misdiagnose and systems that block access to care. There is a wide array of betrayal trauma and while not everyone will experience these incidents such that they arise to the level of trauma, many patients do. Each instance where trust is broken over and over, where individuals and systems demonstrate that our well-being is not kept at the heart of all care is a type of betrayal trauma no matter how big or “small” that event might be. Each interaction in health care is a point where trust can be established or broken in an instant and that becomes particularly poingant when you are disabled, have a chronic illness, are a caregiver, or otherwise have to regularly interact with the health care system.

Betrayal Blindness

Betrayal trauma in is hard to process in the moment. When the fog of physical and emotional pain clears, its calling card is the feeling of wondering why something bad happened that never had to happen? Why did someone have to make something harder? Why did they have to choose invalidation and pain?

To address betrayal trauma, we must be able to recognize it. Unfortunately, there is a strong sense of what Freyd and colleagues call “betrayal blindness” or “the unawareness, not-knowing, and forgetting exhibited by people towards betrayal.” At times, this betrayal blindness is a function of the normalization of the trauma itself. Sadly, betrayal trauma at the as seen and endured are not uncommon but are somewhat “baked into” the health care system. As Grace Cordovano of Unblock Health puts it, “The repetitive burdens become snowballed into overwhelming situations that patients are often just forced to accept as the norm.” We are made to feel that interactions where we have to fight for access to our records or wade through piles of paperwork to access care are normal, when in fact they can be traumatic given the high stakes at hand. Cordovano reiterates, “It’s not just administrative burden. The repetitive frustration and mundane trauma take an excruciating toll. It’s enough for people to want to give up because it’s too complicated.”

Even when betrayal trauma is recognized, betrayal trauma theory posits there’s utility in not recognizing betrayal at all. Why? Because when someone is vulnerable and dependent on another, questioning the perpetrator is unsafe. It is unsafe to speak up when you have to return to those who hold your life in their hands.

Delker et. al, (2017), in exploring family betrayal, aptly explain betrayal blindness and the inability to take action, writing:

Freyd (1996) developed betrayal trauma theory to account for precisely this phenomenon of victims of abuse remaining largely unaware of their abuse. When someone is violated in a significant way, a confront-or-withdraw response is natural and, arguably, adaptive: the victim confronts the perpetrator or ends the relationship as means to protect against further violation. But when victims trust and depend upon their perpetrators for caregiving or other resources—as a child trusts and depends on a parent, coach, or religious figure—confront-or-withdraw responses may jeopardize the needed relationship. In this case, diminished awareness of abuse, or “betrayal blindness,” can be adaptive in that it decreases the likelihood that victims will alienate the perpetrator.

While not all betrayal trauma has to come from abuse or mistreatment, often the feeling and experience is similar because health care mimics the same hierarchical and patriarchal dynamics. Victims of betrayal trauma in health care rely on individual providers and staff as well as institutional systems to ensure they get access to care and medicines. If patiens speak up, they risk losing access to care (i.e. doctors and organizations that dismiss or refuse to treat patients) or face other retaliations that compromise care and often creates more betrayal trauma.

Patients know not to speak up. Those who do often face consequences that indelibly damage the care they receive. Even where individual providers or institutions say they want feedback, when that feedback is negative, the default response is defensive. Instead of reading a patient’s story with care and compassion, feedback is met with skepticism and judgment, thus furthering the harm already done.

Given the difficulty in recognizing and addressing betrayal trauma, Freyd and Smith have developed several versions of the Institutional Betrayal Questionnaire, including one specifically for health care (Smith 2015). The questionnaire first prompts patients to think about health care institutions like hospitals or insurance companies or even “smaller parts of these systems such as a hospital department, a health clinic, or a doctor’s office staff.” Then it asks patients to select any and all of the experiences they may have had on a list of 12 items related to health care betrayal traumas including:

1. Not taking proactive steps to prevent unpleasant healthcare experiences (e.g., by explaining procedures, side effects, etc.)?
2. Creating an environment in which unpleasant healthcare experiences seemed common or normal (e.g., minimizing your concerns, delivering serious news in a casual way)
3. Creating an environment in which a negative experience seemed more likely to occur (e.g., an apparent lack of communication between providers, lack of clear or consistent policies)?
4. Making it difficult to report a negative experience or share concerns (e.g., difficultly contacting provider, not being given a chance to ask questions, no clear avenue for sharing dissatisfaction)?
5. Responding inadequately to your concerns or reports of a negative experience, if shared (e.g., you were given incorrect or inadequate information or advice that was not feasible for you to follow)?
6. Mishandling your protected personal information (e.g., unauthorized release of medical history, losing records, not keeping track of complaints or concerns)?
7. Covering up adverse medical events (e.g., not immediately informing you of a mistake in treatment, withholding information about healthcare coverage, or not disclosing prior records of know risks for a treatment)?
8. Denying your experience in some way (e.g., your concerns were treated as invalid, your prior history was dismissed as unimportant)?
9. Punishing you in some way for reporting a negative healthcare experience (e.g., you were labeled as problematic or responsible for a lack of recovery or timely healthcare delivery)?
10. Suggesting your experience might affect the reputation of the institution (e.g., your experience was contrasted with the “typical” one, you were discouraged from seeking a second opinion or sharing your experiences with others)?
11. Creating an environment where you no longer felt like a valued member of the institution (e.g., you had to repeatedly remind providers of your identity or treatment history, your primary identity was your medical condition rather than a person, you were discriminated against due to a personal characteristic)?
12. Creating an environment where continuing to seek care was difficult for you (e.g., your appointments were repeatedly changed or cancelled at short notice, seeking healthcare was financially or personally difficult and not supported by the institution)?

Heartbreakingly, these are common experiences patients face in health care. Patients are told it’s normal to run into barriers to access care. Many are gaslit to believe that our experiences in health care weren’t that bad or we aren’t actually sick or we aren’t really in that much pain. We’re even gaslit into thinking it was our fault we were hurt by individuals or institutions in health care. Some patients watch as the harm caused is covered up and no one is held accountable. Others feel they have no where to go to speak up and are left feeling isolated in their pain. As such, betrayal trauma is left unaddressed and festers like an untreated wound.

Effects of Betrayal Trauma

Betrayal trauma is not just an esoteric theory. Klest et. al (2019) work shows that betrayal trauma impacts a patient’s ability to follow a treatment regime. They summarize other research on betrayal trauma’s effects writing:

Betrayal trauma is particularly relevant in healthcare given that individuals who have experienced betrayal trauma often report more sick days and physical health complaints (Goldsmith et al., 2012)… Unfortunately, experiencing betrayal trauma can also negatively impact beliefs about trust, safety, and power (Gobin & Freyd, 2014). Individuals who have experienced a betrayal of trust are less willing to place their trust in individuals such as their primary healthcare providers (Musa, Schultz, Harris, Silverman, & Thomas, 2009) when trust in healthcare providers is important for seeking healthcare and adhering to medical treatment (Hall, Dugan, Zheng, & Mishra, 2001). A person’s perception of their relationship with their healthcare provider and the degree to which they perceive betrayal is also important for future interactions with other medical providers (Tamaian, Klest, & Mutschler, 2016). If an individual feels as though they cannot trust their physician, this can impact their trust in the general medical system, and impact future healthcare interactions (Hall et al., 2001).

Beyond the effects listed above are the many other consequences that linger and can create PTSD or PTSD-like symptoms that largely go unaddressed in health care. Instead, patients often find judgment and/or dismissal of their pain and are forced to hold onto trauma that can prevent them from seeking or receiving the care they need. Thus, betrayal trauma gone unrecognized and without repair can be considered a structural barrier to care.

As I mentioned above, I would venture to guess that betrayal trauma is frequently overlooked because many are only looking for the larger betrayals and not the many ways in which patients face providers and systems that break their trust every day (intentionally and unintentionally). Each break in trust adds up. The effects are cumulative and carry over from one interaction to the next and in so doing, betrayal trauma breaks a person. Still, most patients have to crawl back to the very people and system that hurt them. They are forever tied to those who continue to inflict harm.

Addressing Betrayal Trauma

Addressing betrayal trauma is hard. Even if the survivor of betrayal trauma can overcome betrayal blindness, as already discussed, speaking up is difficult. It is even harder to address this trauma when providers and health care organizations are seens as benevolent actors. Providers are often seen as martyrs for sacrificing their time and energy to patient care, thus to say they cause any sort of trauma is seen as an unfair attack. Or their actions may be too easily excused saying that they did not know better. Providers also won’t take responsibility for the system as a whole. They see themselves as individuals within a system and not as part of the system. They are the good guys and think only a few bad apples cause pain.

Providers and systems hold the power in health care where the patient is by default in a more vulnerable and dependent situation. and they get to shape the narrative (including what gets labelled as traumatic), which makes addressing betrayal trauma in health care very difficult. As such, not unlike other systems and institutions, we see a diminishing and dismissal of the effect of betrayal trauma and trauma in general that seeps into every care relationship. For instance, If a patient says to a new doctor, “I felt hurt by my last doctor when they didn’t listen to me about my pain” that new doctor might react in a number of ways – all of which are likely to dismiss trauma. The new doctor might think, “Oh, that’s awful but I wasn’t the one who did anything wrong, that was another doctor and I am here to help,” while they fail to recognize they are representative of their profession and medicine in general. The new doctor may be a better doctor than the last, but they must realize they too are part of the system of betrayal. A better approach would be to show compassion and humility by acknowledging, “this patient has likely been through a lot and it is probably hard to return to care. Her trust has been broken before and while it wasn’t my actions that led to that break, it’s my responsibility to rebuild trust without jdugment.”

In the same scenario, the new doctor may also think, “Oh no! This might be a difficult patient!” and start think about how maybe the patient is just overly needy or unreasonable. The default is not to believe patients, but to believe providers are good people who work hard. This may then lead the new doctor to become both skeptical and defensive with the patient. A better approach would be to veer away from stigmatizing views of patients who are in pain and really listen to the patient’s story so that they feel heard, validated, and understood.

Many patients won’t overtly state that they’ve been hurt or had their trust broken in previous health care encounters. Some patients will have betrayal blindness and may not have the words to express what has happened to them. Others may fear being labeled as “difficult” or worry that expressing their fears will affect the care they receive. But the trauma is still there and it may reveal itself in subtle ways like a patient who is very defensive or a patient who is assertive (often labeled again as “difficult” or even “aggressive”). Feeling defensive and on edge, needing to assert onself or put up boundaries, being less forthcoming or seeming “pushy” may all be signs that someone has experienced betrayal trauma. These are tactics that patients use to survive when they’ve been hurt by health care. They are not unreasonable reactions but they are often treated as such. Providers should explore a patient’s behaviors and reactions with gentle curiosity to get to know their unique health care story in order to understand if the patient has in fact been hurt by health care before or suffered other traumas that might affect care.

Echoing these themes, Tamaiain et. al’s (2016) research found themes in betrayal trauma as reported by patients included a lack of compassion, poor patient-provider communication, and a “doctor-knows-best” culture. They found many patients felt “hurt, distrustful, angry, and helpless” in their health care interactions. And they reported a pervasive feeling of fear – fear of being labeled or hurt – which perpetuated betrayal trauma and difficulties in seeking care. They discuss how betrayal trauma is experienced both in acts of omission (i.e. ignoring or not responding appropriately to complaints) as well as acts of commission (i.e. providing bad care or responding in a retaliatory manner). Thus, in order to address betrayal trauma, we must focus on uncovering the many aspects of betrayal trauma and acknowleding the harm caused.

If trauma informed care (TIC) was made a priority, perhaps it would be easier for providers and systems to start to recognize the pain caused by betrayal trauma, a pain that affects every aspect of care. Unfortunately, the narrative of what TIC is and how to implement it is being shaped and defined by providers, executives, and policy makers rather than survivors, meaning that it is not always used in the service of better care. Much like previous movements such as efforts to push “patient-centeredness,” there is always the potential TIC could become a buzzword rather than a competency meant to inform providers and systems how to adjust care to attend to the needs of patients. This doesn’t have to be, though. As more patients become aware of trauma in its many iterations and the principles of trauma informed care, they can weigh in on how best to transform care to address the barriers to care and harm that betrayal trauma causes.

Trauma informed care holds promise if it is led by survivors. It’s a concept that asks to acknowledge and validate patients as they are and to reframe judgment when offering care with humility. It is one that shifts the power dynamics to try to understand the vulnerable. Implementing trauma informed care is essential to empower patients who have faced all types of trauma and is ever more pressing in the era of COVID-19.

If we want people to trust health care, if we want people to heal from the chaos and pain of health care, if we want people to seek out care, we need to both understand the traumas we’ve endured, including betrayal trauma, and implement trauma informed care for all as soon as possible. Patients deserve better. Patients deserve fewer barriers to care and more compassion throughout care. Patients deserve to have their betrayal trauma acknowledged and repaired. Patients deserve to be believed and heard and treated with dignity and kindness.

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* This is an expansion on a twitter thread discussing betrayal trauma originally posted on November 29, 2020.