I recently stumbled upon this term, betrayal trauma, in an article linked to another article I was reading and I started to consider how this is something that I’ve struggled with. As usual, I feel something, react to it, and then am left to puzzle through what happened and why.
So, let’s start with the definition in the article I was reading ….
Betrayal trauma occurs when the people or institutions on which a person depends for survival significantly violate that person’ s trust or well-being: Childhood physical, emotional, or sexual abuse perpetrated by a caregiver are examples of betrayal trauma.*https://dynamic.uoregon.edu/jjf/defineBT.html#:~:text=From%20Freyd%20(2008)%3A%20Betrayal,are%20examples%20of%20betrayal%20trauma
Let me first say that I was not abused as a child or by any lay caregivers in case anyone was wondering if that’s what I was about to talk about. I want to talk about my expectations and how I’ve been treated by those in the medical profession since my diagnosis of Stage IV Metastatic Breast Cancer (MBC) in 2017. Prior to 2017, outside of having two babies, I hadn’t really interacted with doctors other than in my professional life as a lawyer when I was either suing or representing or engaging doctors as experts. I had a gynecologist who I saw once every year, but that wasn’t sufficient exposure to the medical profession to truly see what goes on behind the scenes.
And so I entered my cancer experience with some baggage from my experiences as a lawyer (a wariness and understanding that they are people who make mistakes), but not as much from personal experiences. At the beginning, I was so overwhelmed with this new dependence on doctors and their expertise to stay alive that I followed their lead and didn’t do a whole lot of independent research. My family and I asked a lot of questions and we certainly advocated for my quality of life; at the same time, we were at such a deficit in terms of knowledge and even where to go for input, there wasn’t a lot of discussion other than what my doctors recommended and how to deal with what needed to be done.
After the haze of the diagnosis faded a little and the chemo brain wasn’t as pronounced, we did and do a lot of research. Since I went to law school and my husband was and is his father’s caregiver after three (3) strokes and my mom is a physical therapist (PT) and my dad is a psychotherapist (LMHC), we have a lot of experience, connections, resources and the ability to ensure that we’re looking at good resources and to be able to evaluate the same information that the doctors are looking at. No, none of us took the MCAT or went to the medical school, but we have a great deal of common sense and the intellectual ability to read the research and interact with the doctors. Plus, I have the advantage of being inside my body my whole life and the increasing ability to read my body and what I need.
And so I walk into the hospital, into the doctor’s offices, into the infusion center, into wherever I need to go already educated to a certain extent. I rely on my doctors as my advisors as they have far more education and experience than I could ever attain, but I also have expectations about how I will be treated and how much information will be shared with me. I think, from talking with other patients and in talking to my doctors, that some of those expectations are pretty universal generally.
Knowing that I will be a forever patient, that I will be regularly interacting with medical professionals until I die, the experience of going to the doctor, interacting with all the support people, etc., is a regular thing. Annoyances and irritations that might be a small thing (think the Princess and the Pea) added up over time and repetition take on a whole life of their own, especially if that thing is a trigger. Especially if I’ve already felt betrayed as a person and am carrying the trauma of that experience with me into each subsequent visit.
In having conversations and researching the mechanism of how care is provided, not just by the doctors, but by the health care system generally, I have uncovered and discovered and experienced how much we (the patient) are reduced to a medical id number or a chart number. In essence, our dignity as a human being is stripped away because we are a profit center for the medical system. Quantity is valued much more over quality in our current medical model in the United States because that’s how profit is made.
Let me say that again, our dignity as a human being is stripped away over and over because we are a profit center for the medical system.
And that betrayal of our basic human dignity, when repeated over and over and over for the remainder of our truncated life expectancy is trauma in the extreme. As we are working so hard to maintain any amount of quality of life amidst the medication, side effects, and just living with a terminal diagnosis, to then be treated as if our dignity as a human being is negligible, that’s just untenable.
What does it look like when something is untenable?
For me, this is what happens:
- the worry and anxiety about what might happen begins days before the encounter;
- the day of the encounter, the anxiety is swirling in my gut and often results in some uncomfortable bathroom moments;
- when walking into the office/building, the anxiety is coursing through my entire body and I’m getting gearing up and accessing any strength I have to be able to handle it;
- when actually interacting with anyone, I begin with feeling guarded and anticipating what possibly could happen;
- when the devaluing occurs, I am ready and willing to address it head on and I don’t back down; yet the lead up and the actual experience takes every spoon I have and I am left drained and depleted for many days following these appointments where I have to stand up for myself against the very people who are supposed to be caring for me, those people who are compensated by my insurance company to do the medical procedures that keep me alive.
What can be done about this?
Once the medical system has failed you, you know it can. Once the medical system has failed you, you expect it. Once the medical system has failed you, you know how much energy it takes to deal with that. Once the medical system has failed you, there is a betrayal sized hole that only gets larger every time the fear of it occurring again is validated.
What’s the answer?
What I have chosen to do is to be the very definition of a squeaky wheel. To speak up when my betrayal trauma rears it’s ugly head, to say what’s going on inside my head and heart, and to follow up with complaints as needed. Others may choose another way of dealing with these issues. Be yourself and choose what is the best way forward for you since to raise these issues, knowing that it can take every bit of courage and energy you can muster to address.