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.
No Half Measures 
God, I so relate! When first diagnosed I said, “I’ll do whatever you want, just make me better.” Ha. I had to ask my stage, my diagnosis, why they were doing what they were doing. I am NOT stupid, but I feel like I’ve been forced to earn a Ph. D in a subject I never had an interest in – and it’s only getting worse since becoming stage 4. But I am not afraid to ask, demand, or even scream about what I want. The PA at the cancer center IS stupid and I’ve made it clear that I won’t see her and she cannot touch me. New meds caused breathing difficulties and I made it clear that I was not taking that drug (it’s heart related), despite the nurse telling me that it’s a popular drug that few purple have problems with. (Well guess what? I DO!). I can be my own advocate, but I never dreamed I’d have to.
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I wish I could say that your experiences didn’t resonate with me but they do. I also have to speak up frequently and loudly and there are people I don’t see at my cancer center. So many things that just tear open my heart over and over. I’m so sorry you have experienced these awful betrayals too.
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I’ve never seen the term betrayal trauma used in this way. However, from what you’ve written here it feels like absolutely the right word. I’m sure many patients will be helped by this post. Thank you for being there for so many who desperately need to feel seen and understood.
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Thank you for reading and commenting. It resonated with me as to why I have such a strong reaction.
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This encapsulates what I have had difficulty describing. I am thankful my oncologist and several professionals on my medical team understand this. For those that don’t, I am definitely sharing this with them. Once again, thank you for your voice!
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So glad it resonates with you! It was definitely an ah-ha moment when I read the article!
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It’s just so troubling that something already terribly burdensome is made so much worse by these institutional forces.
I thought of you and others when I listened to Alan Alda’s interview with Dr Jillian Foote. I know many people are familiar with her book; this interview is a good intro to the efforts of someone who’s really trying to change the medical profession for the better. Perhaps more enlightened doctors can demand a more patient-centered system.
Here’s the link. For those who don’t get Apple podcasts, you can Google for other listening options.
https://podcasts.apple.com/us/podcast/does-your-doctor-care-about-you/id1400082430?i=1000522106225
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Thank you for sharing! I do think that there are some amazing docs out there who want to help. It’s the huge administrative machine that makes it hard, I think. At my cancer center and others the support staff don’t even report to the docs, they report to administration. I go straight to the top but no patient should have to. The system itself only reminds us day after day after day that we exist only to make the bean counters money. It’s so awful to be reduced to a part of the bottom line.
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Your article definitely hit home for me, and it was timely. On top of the fact that I am getting lousy MBC care from my current provider, and virtually NO support… I have been giving a lot of thought to my personal triggers. Unlike you, I score very high on the Adverse Childhood Experiences (ACEs) test… and have experienced child molestation (and being stalked by that guy into my teens), significant emotional abuse (and gaslighting) by narcissistic parents, and serious medical neglect by those same parents. And, in 1987, when I needed to get a (first) pap test as part of pre-employment medical exam… I had a very bad experience at a supposed “clinic” I went to that turned out to be a private residence and a male doctor with no nurse, receptionist, … blah blah blah. Long story short, I have never gone for a GYN exam since… as a result of this experience. (He did not sexually assault me, physically… but he made disgusting sexual remarks to me throughout.)
On top of the shell-shock I feel/felt at being diagnosed with de novo MBC in July 2020, I realize that I am triggered very easily by people (and medical professionals, especially) who misdiagnose me or ignore my needs. Knowing that I need both cervical cancer screening and a colonoscopy (as both my mother and paternal grandmother had colon cancer)… I am for the first time terrified that I have more than “just” MBC. (I was in total denial about the breast thing, so, thinking I might have a secondary cancer is a trauma response.) And, with my 1987 experience, I feel that my upcoming pap (which I KNOW I need to deal with) will bring some extra feelings of vulnerability or, even, flashbacks for me. Then, I am also worried about how well I will tolerate this exam due to the pins in my hip (the childhood neglect thing) and my bone metastasis and what triggers intense bone pain. I decided to let this new GYN know about all of this in advance of my appointment, and explained what I went through via email. Well, she wrote back to me with a response that *I felt* was dismissive. Clearly, my follow-up response to her was not about her, specifically. It was exactly what you are referring to in your article.
I became incensed, and wrote this to her:
“I am troubled that you didn’t acknowledge my previous experience and how traumatic it was for me. Here is a tip from a Social Worker… next time say, ‘I am so sorry you went through this and that someone violated you in this way. When you come for your appointment with me, I will make sure you feel safe and that we do everything we can to make you comfortable.’
I am cancelling my appointment with you. You are not the right doctor for me.”
Well, she came back VERY apologetic and we have since talked through it all without talking about the specifics of what I experienced in 1987. This new GYN was right in interpreting what I said to her as me not wanting to talk ABOUT it… but, rather, my worries about how I will feel during my appointment… physically and emotionally. I am now absolutely, completely comfortable with this GYN. But it really is something I have been exploring over the last week or so in terms of how I go NUTS when someone ignores my needs. And that has been a steady diet with my current healthcare provider. Needless to say, I’ll be heading to Johns Hopkins when my insurance is up for renewal in November. And, I will drive my care and demand that I be listened to. As a Social Worker and a former disability advocate, I have the skills to do this for myself. But standing up for ME is something I have not always done well. My MBC has forced me to learn everything I can… and question EVERYTHING. On the upside… I am on top of everything and I will not just accept crumbs from my provider.
Sorry for the rant. But, as I said, your article was very timely for me. And, I have always wanted to reach out to you personally anyway! I SO appreciate your articles, Zoom meetings, and Facebook contributions. Thank you, Abigail!!
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I am so very sorry to hear about your experiences and it makes so much sense to me that your current and future care will be triggers and have flashbacks and so much anxiety/scanxiety…. you definitely NEED compassionate providers. While i am so sorry that you need to advocate for yourself so strongly, I am so glad that it seems your work training has given you some of the tools you need. Good for you in looking forward to try to anticipate what you will need in the future and planning for that. If there is anything I can do to help you, please don’t hesitate to ask. Love and gentle hugs to you. ❤️
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Thanks, Abigail. I am doing okay, and I know I am lucky that I have both a mental health background and an ability to find the answers I need. Sucks that so many of us have to piece together our education (about MBC) on our own… but I am doing so much better now that I have at least SOME information about what should be happening with regard to my treatment. Oh, and just like I left abusers from my past… I will similarly be leaving Kaiser for Johns Hopkins. And I have told them so!!! I need and deserve more than Kaiser has offered, and this is quite literally an issue of life and death. For right now, I am trying to stay as healthy as possible until I can make this change… and at least for right now… I am stable (emotionally and with regard to cancer progression). Onward!
Love and hugs to you as well! ❤
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Good for you!! If you haven’t already connected with Christine Hodgdon, you definitely should!! She’s at Hopkins and is well connected there.
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Each of your posts are so powerful, and you are skilled at explaining what can be complex emotions or reactions that you are feeling in easy-to-understand terms. As I was reading about your betrayal trauma, I thought you know what, I understand what Abigail is talking about and I feel that to a lesser extent in my own medical experience (because of my different stage), and also it strikes me that betrayal trauma is multiplied for anyone in a marginalized group–because we know marginalized groups get questioned/dismissed even more than us white ladies. Thank you for highlighting this aspect to medical visits. I hope you are having a really nice day with the family.
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Yes, so very true. I have a very different experience than those of color and I can’t imagine how hard that is since I already struggle. Such a great point and something to think about as we raise our voices for change. Thank you for reading and commenting!!
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