Medical trauma: Spring 2026 exploration
What even is trauma?
Because I realize that the word itself, trauma, seems to be used to mean different things in medicine, I consulted my favorite dictionary for a concrete definition to start with.
1. a: an injury (such as a wound) to living tissue caused by an extrinsic agent
b: a disordered psychic or behavioral state resulting from severe mental or emotional stress or physical injury
c: an emotional upset
Helpfully, the good folks at Merriam-Webster also included this panel, which I think does a far better job of telling how people use this word.
Trauma is the Greek word for "wound". Although the Greeks used the term only for physical injuries, nowadays trauma is just as likely to refer to emotional wounds. We now know that a traumatic event can leave psychological symptoms long after any physical injuries have healed. The psychological reaction to severe emotional trauma now has an established name: post-traumatic stress disorder, or PTSD. It usually occurs after an extremely stressful event, such as wartime combat, a natural disaster, or sexual or physical abuse; its symptoms include depression, anxiety, flashbacks, and recurring nightmares. (emphasis added)
Medical trauma, at least the kind I am interested in learning more about at present, could be defined this way:
The natural psychological and physiological reaction to extremely stressful events caused by, or that happen within, the medical system.
My background
Let me pause to say, I am not an expert in trauma. I have not studied it the way a scholar would, nor have I worked with its effects the way trauma therapists do. Heck, I’m not even a trauma surgeon. (though they obviously focus on the physical-wound-type of trauma)
That said, I have learned a fair bit about childhood traumas, mostly the kind that come from parents who may or may not intend to do harm, but who do consistently cause it to their children. I’ve read (at least part of) the book The Body Keeps the Score, which was primarily based on observing veterans and helped launch PTSD to the forefront of many conversations. From what I understand, PTSD as a construct is based on an adult soldier who experiences a soul wound in one or a few terrible events, and the standard definition fits pretty well for other adults who have experienced other events. However, the term cPTSD or complex PTSD has been used more often for folks who’ve had, for example, abusive childhoods. They can’t point to a single horrible event, but that doesn’t mean their trauma isn’t real and impactful.
Back in medical training, I remember someone at least mentioning during an ICU rotation that sometimes people come away with trauma because of nearly dying, waking up intubated, that sort of thing. Somone at least acknowledged that near-death experiences could cause an acute PTSD response. This is consistent with what’s in the DSM-5 (at least what other people say is in there, I’m not paying for access myself).
The gap emerges
Although I’m no expert, I am an advocate who listens to people tell me about how they have been harmed while trying to get the help they sought. Many of them have been given really good reasons to distrust the medical establishment of doctors and offices and hospitals and wards, that are not necessarily related to a near-death experience. They are more often related to being ignored and invalidated and dismissed and minimized. I suspect its more similar to the complex relationship that people who survive childhood and adolescent cancers have with the medical system – more akin to a cPTSD. In short, I fully believe that many of the experiences people have within the broad world of healthcare are traumatizing.
Yet, I hadn’t really heard or read much about this flavor of trauma. I imagine it has some particularities to it, as well as things in common with other kinds of soul wounds.
I thought I could just read an article or two, maybe a book about medical trauma, and then I’d have a little broader knowledge base to support my clients. I figured an hour or two online would yield some excellent educational resources and support systems. It’s a numbers game, surely, since it’s an industry that all of us interact with and it has a huge potential for harm, right? Lots of people have to have experienced harm from medicine. We know that from the statistics on preventable deaths. (Though there is some controversy on how to count, a widely cited report ranks medical error as the 3rd leading cause of preventable death in the US.) It would make sense if there had already been a groundswell of support for and by these individuals and families to heal themselves and each other. It would make sense that it could be a rich area for psychology professionals or physicians to explore and write about.
There should be tons of information. Surely.
Boy was I wrong.
I will share with you what I found, but be warned, it’s neither the academic/scholarly or grassroots/nonprofit goldmine I thought I’d find. I did not find a consensus approach on how to heal from institutional betrayal, the way there are some consensus approaches on how to heal from other traumas (e.g., childhood abuse, war).
Oblique angles
It seems that there ARE pockets of people around the internet who rally around this feeling of being harmed in medicine. Many of them want to do something about it too – which is great. A brief list and review of the organizations I found in no particular order.
A social worker runs this website on medical trauma. They advertise support groups, grounding exercises, and educational content, but it is all behind a paywall so I can’t say more about it.
A fellow BCPA runs the PULSE center for patient safety, education and advocacy, which does include frequent online meetings on patient empowerment topics and legislative advocacy around patient safety.
Through Reddit, I found a group focused on harms of voiding cystourethrograms (VCUG) – a common, invasive procedure in pediatric medicine. They focus on advocacy around changing this specific standard of care.
That’s about it, at least as far as I could find. None of those were going to help me understand how to support someone after they had a surgery that left them disfigured. There wasn’t a lot of advice for those who have been to doctor after doctor and had their symptoms dismissed and stories discounted as if their lived experiences were somehow less real than a number on a piece of paper that represented some molecule in their blood. No great wisdom for those who had lost huge parts of their childhoods, adolescence, or adulthoods to disease and treatments that restricted their lives. Little solace for those whose loved ones have died from a mistake.
All 3 of these groups that I did find are relatively small and they come from people who have had close experience with medical harm. To me, that doesn’t feel like a coincidence – it feels a lot like post-traumatic growth.
It would be a disservice if I didn’t mention how wonderful of a job PULSE and the Care Partner Project (founded by another family who experienced medical harm) do at getting out education to people about how the healthcare system works, what their rights are, and what they can do to improve safety.
However. The safety and policy angles are, at best, oblique cuts at the heart of what I wanted to know – how do we deal with the feelings? How do I help people trust again? Or, at minimum, be less traumatized by their interactions?
Why I wanted something different than other trauma advice or patient safety advocacy
If it isn’t clear, let me elaborate on what I do know about trauma and PTSD and why a person who has experienced institutional medical trauma is in such a tough position.
The core of PTSD seems to be reliving painful past events in memories, dreams, or flashbacks (which are kind of like involuntary, vivid memories). From what I understand, the brain is trying to process the facts of the scary thing(s), but also the big feelings like terror or helplessness that happened. Because the brain is just popping up these terrifying images and thoughts without a person intentionally calling them up, most people try to avoid the situations that may lead to PTSD reexperiencing.
For example, if you got mugged during an oil change, you might avoid getting your car’s oil changed in the future. You might also avoid going to garages or auto parts stores (because they smell like oil) or even thinking about cars at all. Maybe, it becomes so intense that you can’t stand the sounds of traffic, and you stop going outside of your house. Or you stop hanging out with friends because someone might mention a car.
The avoidance is a key part of the trauma response, and it sucks. It limits people’s lives. It especially sucks when the source of the trauma is a doctor or a hospital (or a parent if you’re a kid) because you have to rely, at least in part, on the person/system that’s harmed you. Maybe a person could give up their car, move somewhere where they aren’t bothered by cars, and so on, but they can’t stop having a body that needs healthcare. And, at least for most of us, that care has to be delivered through the system of clinics and hospitals sometimes.
Conference and lecture recordings
I thought I remembered an email crossing my inbox about a lecture or conference on medical trauma a few years ago, but I couldn’t quite remember the specifics. I was interested at the time, but busy with other things. Anyway, I decided to watch a few videos next. Luckily, they were all free.
A BCPA organization called HealthAdvocateX put out a 5-part video lecture series on trauma in healthcare in fall of 2024. It’s a fairly basic primer on trauma concepts.
In 2023, the Ehler Danlos Society’s global conference featured a few speakers who discussed trauma. A physician with an anthropology degree, a physiotherapist (PT) focused on harm reduction, and a patient who had been misdiagnosed. The full playlist features many videos relevant to folks with EDS, chronic pain, and so on, but these were the 3 that I thought looked most related to my aims.
Although the 5-part lecture series did touch on how traumas are talked about in healthcare, they focused on things that happen (mostly) outside of exam rooms. Poverty, having an incarcerated parent, being exposed to violence, that sort of thing. There was one moment when a presenter mentioned that there are certainly more things that can cause trauma responses than what was listed, but that was as close as we got to talking about trauma from medicine.
Perhaps I was foolish for thinking the institution of healthcare and medicine could or would take some accountability and responsibility for the harms caused. After all, they probably mostly hopefully had good intentions and maybe they feel like that’s enough. Lately I think that’s a foolish belief: intentions aren’t enough. Impacts matter too. And the onus of correcting the adverse impact should not always and exclusively fall on the one who experiences it – some of the responsibility must fall to the party who caused the harm, regardless of good intent. Particularly when the do-er in this situation is the massively resourced health system. If we don’t take some responsibility, how on earth are we going to close the gaps between intentions and impacts?
EDS community FTW (for the win)
Thankfully, there were a few in the Ehler-Danlos syndrome (EDS) community who seemed to be speaking about what I was interested in – how multiple interactions over time shape how patients experience health and healthcare in the future.
The physiotherapist from Australia put the onus on the provider, which I agree is where it belongs. Her advice to them was to walk into each encounter with empathy, take care of yourself, learn to regulate your own nervous system, and believe people. Simple to say, hard to do. Like most of the things that really matter I suppose (eat right, exercise, sleep…)
The patient’s advice to those affected was to seek out a trauma therapist. It’s the best advice I could offer, too. I’m definitely not qualified to help people unpack the effects of trauma, but lots of people are.
Finally, I saw the top of the playlist from that EDS conference, and it led to me find one academic paper. Hooray! The researchers did a qualitative study of hypermobile patients, most of whom felt they had been labeled as “difficult patients,” and coined the term clinician-associated traumatization which is a term that I think makes intuitive sense. The lead author also spoke about it if you prefer not to read. They concluded that as crummy as it is that this is happening, the cure is probably more honesty, empathy, and compassion in exam rooms – for everyone in there. (As a neat bonus to not harming patients, empathy can reduce the number of clinicians traumatized into burnout, too.)
For whatever reason (perhaps because the condition often affects a lot of white women, many at a point in their lives where they have earned some income and still have time and energy resources for advocacy), the Ehler-Danlos community seems to be leading the way in researching what I think is fundamentally a relational failure. (that is, medical trauma)
Even people who have called me asking about malpractice (I’m not qualified to assess that legal claim) have said that they understood there are risks to procedures. They may be upset about a “bad outcome,” but the part of the experience they weren’t expecting and can’t tolerate is the way their providers often seemed to change afterward – feelings of abandonment, judgement, and being ignored or unheard come up very often in these conversations. The betrayal, the uncertainty, the avoidance and reluctance to trust this medical system – that comes up for my trans clients, people of color, women – everyone who lives with part of their identity treated as less than. These are preventable, relational harms. They are happen to far more people than just those with Ehlers Danlos.
Some hope
All of which brings me to a hopeful message. (I am a millennial after all.)
The fact that some actual research is happening is encouraging. I know that it’s more than just the EDS patient community affected by relational failures in healthcare. In fact, I know it’s the physicians who are haunted by difficult diagnoses too. Probably across rheumatology, primary care, neurology, OB/GYN, hematology, orthopedics, gastroenterology, psychiatry, likely every specialty, there are patients and clinicians who are struggling with medical trauma and clinician-associated traumatization. They may not have words for it yet beyond difficult and burnout.
As one of many well-intentioned white women out there, I have hope that things can be better. That may not sound like much, but it is not nothing. Well-intentioned white women with resources have been the driving force for meaningful societal improvements (like expanding access to voting, criminalizing child abuse, and creating domestic violence shelters). Of course, those good intentions came with some less good impacts too, like some racist exclusionary bullshit. Yet, some definite wins can happen.
As an aside, I think all causes and movements are strengthened by diversity of opinions, and some tolerance for making mistakes and correcting ourselves. The tent has to be big enough for all of us, even and especially when we disagree on particulars. Certainly, for this problem, it has to be big enough for patients, doctors, therapists, and advocates to sit together and talk about how the system has failed them and how it could be rebuilt better.
What can you do?
So, what can we do today?
My answer is probably longer than it should be. The short version is this: show up to every encounter as your best self.
My hunch is that many doctors just don’t have the skills to understand how they might be contributing to difficult situations and/or the training to do something different. Perhaps, they haven’t had a reason to flex the muscles of self-insight and humility in a while. Maybe they never learned how to do self-care or regulate their own nervous systems. That’s good news in my book. We aren’t talking about evil doctors (though there may be a few), we are dealing with a systemic failure in training and in culture which can be corrected.
Therapists aren’t automatically assumed to know how to handle every situation without training. In fact, the counseling professions have developed ways to train each other and even assess for these critical relational skills. I don’t see a good reason why doctors couldn’t too. In the short term, maybe if you are a doctor, you can learn some new skills. If you are a patient or a supporter of them, maybe you can approach an appointment with more understanding for your provider (not that you should have to).
On the individual level, traumas can be healed. Nervous systems can be re-regulated. There are new ways forward for each of us, when we are brave enough to look for them and walk those paths. We can choose to bring a support person with us to appointments or find a different doctor. We can all acknowledge how old stories contribute to how we show up in the present and work on owning our pieces of responsibility. We can all practice self-regulation with one or more of the many, many ways to do that (biofeedback, meditation, mindfulness….). I even met a life coach in March who’s favorite thing in the world to do is help anxious folks re-regulate their nervous systems. None of us have to walk our paths of growth alone.
On a personal level, I’m still looking for a great resource to share with my colleagues and clients about complex medical trauma, the feelings that come with it, and how to move forward. I want something to hand to them to let them know that they aren’t alone and that there are words for the things they have lived through. Let me know if you have it!