I think a lot about betrayal trauma lately. Specifically betrayal trauma in health care. “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) https://dynamic.uoregon.edu/jjf/defineBT.html#:~:text=From%20Freyd%20(2008)%3A%20Betrayal,are%20examples%20of%20betrayal%20trauma.

There are a lot of different kinds trauma in general (emotional, generational, physical, medical, etc) and while trauma isn't often addressed as it should be, I'd bet betrayal trauma may be grossly overlooked.

Not just the grand betrayals that cause visible harm but what I’d 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.

As Lewis, et. al 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..." ( https://journals.sagepub.com/doi/10.1177/0894318419864344)

Lewis explains that "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.” ( https://journals.sagepub.com/doi/10.1177/0894318419864344)

Betrayal trauma in is hard to process in the moment. When the fog of 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?

Even then, betrayal trauma theory posits there’s utility in not recognizing betrayal at all. Why? Because when someone is vulnerable & dependent, 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.

Patients face betrayal trauma in small, mundane encounters (i.e. frustrations of getting records, scheduling appts, following up on rxs) or in big ways (i.e. medical trauma), where our trust is broken over and over and our well-being is not kept at the heart of all care.

Yet any patient who has spoken up can tell you the consequences are not often positive. There is simply more betrayal.

Betrayal trauma is not just an esoteric theory. Studies show that betrayal trauma impacts a patient’s ability to follow a treatment regime (Klest, et. al 2019 https://content.apa.org/record/2019-14230-001). Yet it goes unrecognized time and again.

I’d venture to guess that betrayal trauma is frequently overlooked bc many are only looking for the medical malpractice-level betrayals & not the many ways in which patients face providers and a system that breaks the fiduciary trust every day (intentionally and unintentionally).

I can't count the many betrayals I’ve experienced in health care, including being told 5 years ago no one wanted me or how 1 year ago no one took my injuries seriously following car accidents or how just 2 months ago I again found my records riddled with cruelties and lies.

All of this adds up and becomes overwhelming. It breaks a person.

Still, I have to crawl back to the very people & system that hurt me. As a disabled person, I have to return to those who have taken advantage of my vulnerability over and over again. I have no choice.

I am forever tied to those who continue to break my trust & hurt me. It’s like never being able to escape abuse. And there’s not a way to change it because providers are worshiped as heroes. They hold the power and they get to shape the narrative. Their martyrdom takes priority.

So here I sit, weeping in memories that will never go away wondering how to continue to survive not just the many traumas that built me but the betrayal trauma that continues to be perpetuated. Is there a place to heal and feel safe? I’m not sure there is.

If trauma informed care were made a priority, perhaps there would be a recognition of this pain that affects every aspect of care. But as I recently pointed out, TIC is being shaped by drs and execs, not survivors. https://twitter.com/GilmerHealthLaw/status/1328590737726902272?s=20

Trauma informed care still holds promise though, 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. It is one that shifts the power dynamics to try to understand the vulnerable.

We will need trauma informed care more and more in the coming weeks and months as we continue to be confronted with COVID's effects. https://twitter.com/GilmerHealthLaw/status/1257761445128753157?s=20

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 trauma informed care for all as soon as possible.

There's so much more to say on betrayal trauma and health care, but the irony is that trauma has robbed me of a lot of my ability to write and engage and I'm not sure when or if I'll get that back. What's worse is knowing I'm probably not alone in this.