Next in a series of very informal e-patient request blog posts, which feed the equally informal patient communities page. If you haven’t browsed the series you might find it interesting to see the kind of information people exchange for some conditions … and for others, we got nothing. Welcome to the internet!
This request is from e-patient Brenda Denzler, shown here in (characteristically) two comic settings. She’s seeking help for an issue that’s been with her for her whole life.
The doctor she mentions is Ryan Madanick @RyanMadanickMD, whom I’ve met on the conference circuit (particularly at Mayo social media) and online!
She sent this email. (In a comment I brought up EMDR as a trauma treatment, but I don’t know a lot, and besides, I’d like to hear more about other child medical traumas.)
My gastroenterologist was impressed with my preparation as a patient of his and referred me to your site. I’m not sure what it means to be your “current or potential client” – but am taking a chance by contacting you this way, anyway. [I don’t take “clients.”]
In late 1958 and early 1959, I had two medical situations arise. I was 5 years old. Both were traumatic, but I probably could have gotten over the first one had the second one not occurred—and so soon afterward. For the second situation, I was hospitalized in isolation for six weeks and came within hours of dying, at one point.
I have spent my whole life since then with medical PTSD—but I wasn’t consciously aware of it. It ruled my life in countless ways, all without revealing itself overtly. It finally emerged into brutal conscious awareness when I was diagnosed with inflammatory breast cancer in 2009. The genie has refused to go back into the bottle since then, and I have been in counseling and self-education to try to reduce my levels of arousal when it comes to invasive medical situations.
I have found that there is very, very little information out there about the long-term psychological and emotional effects of early childhood hospitalizations. I mean like, “What happens when these children from the 1940s and 1950s and 1960s have become adults and must engage with the medical world again? How do their previous experiences shape what they are able to accept, and how they are able to accept it, when they become adults? How do they cope, when they realize they have medical PTSD?”
We accept and acknowledge the likelihood of long-term trauma resulting from rape. We accept and acknowledge the likelihood of long-term trauma resulting from child abuse. We accept and acknowledge the likelihood of long-term trauma resulting from war.
But we barely accept and largely to not acknowledge or honor long-term trauma resulting from medical treatment—no matter how necessary that treatment may have been at the time.
I need a community. I need fellow sufferers to hold my hand, from time to time. I need a community of people who know EXACTLY what I’m talking about, and who do *not* judge me to be ungrateful and selfish because, hey, I’m alive now, aren’t I? So what do I have to complain about? Right?
Any ideas on this topic?
Brenda Denzler
Updates 8/24: Two new comments today with additional information about PTSD – not specific to medical PTSD:
- First comment is about a Vanity Fair article this May that makes the condition vivid and summarizes lots of research
- Second comment is about the polyvagal theory first proposed 20 years ago, suggesting that the vagus nerve has two distinct parts, and the more primitive one takes over (perhaps causing this condition) when the more developed one “can’t handle it” anymore.
Thank you to all who are contributing to this discussion!
I’m happy to commiserate with you about this issue. I’ve been thinking a lot about medical trauma and how it shapes my life and choices. I’m not ready to talk about all aspects publicly yet.
I will look forward to hearing what you have to say, when the time is right for you. In the meantime, thanks for being a validating voice for me.
So glad you posted this, Brenda! In 1962 at 11 months of age I had cleft palate surgery, which left me with medical PTSD. I remember hyperventilating when driven past a hospital by age 5. I had a number of other childhood surgeries but thought I was out of the woods as an adult, until told I needed a jaw bone graft at age 35. Then I sought counseling for the crying, blackouts, etc that I learned were typical symptoms of PTSD. But nobody seemed to have heard of medical PTSD, especially from a surgery in infancy.
Since then I’ve gone to various forms of counseling for PTSD, including neurofeedback, which I found quite helpful. The more I learn about it, the more I realize how far the emotional aftermath of PTSD reaches in my life, and the more I try to take charge of myself and live in my present body, not my past.
I recently read “The Immortal Life of Henrietta Lacks”, a nonfiction book about a woman whose cells were taken without her permission in 1951, and whose family were subjected to tests they neither wanted nor understood. In the 50’s and 60’s, doctors were treated as gods, beyond question or accountability by most of us mortals. I am glad that culture has improved in the past 50 years.
Hi, Lise. I read the book on Henrietta Lacks several months ago, too. Quite the story….
But I’m not entirely sure that the medical culture has improved all that much in the last 50 years. In some ways, yes. But I still have had a lot of trouble with discussing things with physicians, us making agreements about what procedures I will and will not accept, or making agreements about how certain things will go — and then having them ignore our agreement. Not because the situation, once we got into it, was much different than we had thought it would be. That would at least be understandable. No, they have repeatedly ignored agreements made with me, simply because they didn’t care enough to either remember those agreements or honor them.
I cannot imagine having that kind of surgery at such a young age. I can see how it must have been very hard. The thought of someone messing with my throat is a big hot button for me. And I think it was because of my first hospitalization. I can’t imagine having these same issues, but with my whole mouth and not just my throat!
I wonder how much of our traumatization, back then, sprang from inadequate sedation for procedures? In my case, the first hospitalization I had was for a tonsilectomy. I remember only small snippets of the event, consciously. But the longer I go trying to deal with this PTSD, the more inclined I am to think that I was initially traumatized by being inadquately sedated for it.
Anyway, thanks for writing.
I also had a childhood hospitalization at age 5 that I recall vividly today. I am a nurse and during nursing school some experiences gave me flashbacks. I can totally understand how these types of experiences can be like any other childhood trauma and cause issues later. Fortunately pediatrics has changed considerably and the childs experience is acknowledged.
I wonder if there are support groups for childhood trauma that might be appropriate.
Hi, Marge. There are no support groups for childhood medical trauma that I am aware of. I’ve checked around in a number of places, and so far, nada. Because, I think, we do not acknowledge that even medical experiences that were extremely necessary, when we were children, can nevertheless cause psychological damage that will last for decades.
As a part of my trying to re-think what it means to be critically sick and have to be under a doctor’s care and in the hospital, I took a guided tour of one of our local children’s hospitals. It was wonderful! And when I asked about children like I was, who are too contagious to use many of the facilities available for the kids, I was told that there are ways that they can nevertheless let even these kids play and have some fun and support, to the extent that they are physically able to do so. You are right, Marge. How we treat children today is a lot different than 50 years ago, thankfully!
But it’s too late for me. Now it seems to be a matter of conducting a desperate psychological salvage operation.
How did you deal with the flashbacks, when you were in nursing school? Do you think that your experiences as a child had any bearing on why you decided to become a nurse?
Perhaps an online support group is needed?
The way I dealt with this throughout my career is to avoid pediatrics. My clinical area was adult nephrology and now am an academic health onformatics researcher.
So happy to see how this discussion has taken off.
Do you think, Marge, that your choice of nursing as a career was influenced by your childhood medical experience(s)? I mean, has it been a way of “redeeming” those memories and making the terror smaller and more manageable, because you have very deliberately motored into the territory of the “scary thing” and claimed at least a part of it for yourself, now, as an adult?
Hi, nursing is my second career and my interest came after the profession of nursing and health care environment started changing. Did fond gravated toward management and now research onformatics. Bet we could examine my move from the bedside to academia based on my early experiences.
Marge
Brenda, sorry for the delay in releasing your comments – I had a website notifications glitch and just saw yours now.
All, I increasingly think this is going to be worth learning more about.
Have any readers here had experience with EMDR, which has been said to be useful sometimes for PTSD? Long ago (in a non-medical context) I got amazing results from it – my gut feel was that it somehow unlocked something that was “stuck in my system” so life could go on. (I’m using totally non-scientific terms here, just my gut feel.)
For those who don’t know, it’s not psychoanalysis at all – no tracing back to original causes or anything. It felt to me more like physical therapy for the mind, if that makes any sense – just massaging and releasing the stuck part.
I tried EMDR, but found it unsatisfactory. It may have been due to the practitioner’s shortcomings, however, and not due to any fault with the system itself.
I am very interested in this subject as my daughter had a kidney transplant 5 years ago at the age of 14. She is still traumatized by anything medical. Recently, her nephrologist announced his moving to a different hospital and she is devastated. She takes medication for anxiety and her quality of life is very poor. I do want to check into EMDR as you are the second person to mention it to me. Maybe that will help her.
Thanks for bringing this subject to our attention.
Lisa, please let your daughter know that she is not alone in her feelings. I think this is a relatively “normal” response to an abnormal situation — the “abnormal” being having medical procedures like that. And give her a hug for me, from one medical PTSD person to another. I feel for her. I know what it’s like.
As for you, I am so glad that you recognize what is going on with her and are trying to help her find the help she needs. After my medical PTSD had emerged and caused all kinds of complications with my cancer treatment, my father commented once that he guessed they should have gotten counseling for me after my hospitalization at age 5. But of course that is silly talk. Back in 1959, people didn’t do things like “counseling.” That was something weird and esoteric that rich folks might do…but the common person didn’t do that.
He’s right, though. It might have helped me avoid some of the problems I’ve had in the last 55 years. Thus, I’m so very glad that your daughter is aware and that you are aware. That’s a great first step.
And if you find that EMDR helps her significantly, that is a fantastic second step! Please let me know how she does.
Hi there,
I’m not sure if you are looking for treatment, but have you considered neurofeedback in your journey? The premise is actually changing your brainwaves through biofeedback. It is really expensive where I am in Canada, but I did go for an assessment and was amazed when the psychologist told me what all of my mental health issues were just by looking at my brainwaves (and was spot on!). I haven’t had the actual treatment for neurofeedback, but just wanted to pass this on for your reference.
Hi, Guest. Thanks for the suggestion. I’ve never heard of this, but will do some investigation.
Hi Brenda,
Here is a q&a from the office where I went for my assessment in Vancouver, Canada: http://www.swingleclinic.com/about/qa
And a link to a book: http://www.amazon.ca/Biofeedback-Brain-Neurotherapy-Effectively-Depression/dp/0813547792
I think with this type of therapy, it isn’t so much about re-living the experience, but actually changing the way your brain waves work. I hope whatever modality you try, you will be able to find something.
Hey, Guest. Just got Swingle’s book and read the first chapter tonight. Much to think about. I wonder if it would help me? Thanks for the lead.
Thanks, Guest. I’m looking into this.
Essentially, I know that what has happened is that I have memories encoded into the limbic portion of my brain that are very, very strong (a neurotransmitter called GABA no doubt played a role in that encoding). The limbic is the most primitive part of our brains–the part that controls our “fight or flight” response. When that portion of my brain gets triggered, the strength of its activity pretty much drowns out the activity of the more rational neo-cortex. Merely willing my more rational side to triumph is not usually effective. It gets swamped by the limbic system.
So I need some way to ratchet down the limbic system to a more reasonable, functional level. Not necessarily eliminate that response, but ratchet it down a few notches. Neurotherapy may be the tool that could do that. I’m going to look into this with a local neurotherapist and see if it is affordable. Any port in a storm, right? Hope springs eternal, and all that.
My guess is that EMDR accomplishes the same type of thing, but using a different modality…and I just got a practitioner that wasn’t suitable, when I tried it.
Hi Brenda,
I tried EMDR a number of years ago and didn’t have a favourable experience, either. I remember getting to such a high state of anxiety that I was impacted by that…the next day where I couldn’t function! From my limited understanding of neurofeedback, it seems a bit different from EMDR as I don’t think you would necessarily be talking about the event etc. (don’t quote me on that, though!) I think when you do neurofeedback, I’m guessing that you are plugged in to an EEG and using biofeedback etc.
When I had my assessment, I had the EEG on and the psychologist read my brain waves: from reading my brain waves showed him I had a trauma marker, depression, even showed that I don’t have a good short term memory, I have trouble quieting my mind (I have a lot of anxiety disorders). It was kind of — affirming to have that show up — that it wasn’t something I was’making up’, but was showing up in my actual brain waves!
Keep us posted what you find! :)
I wrote a reply but got kicked out before I finished. I am 65 and have had anxiety problems off and on in my adult life, I have a cleft lip and palette. I had at least 5/surgeries very young, I had a few good years till two years ago I had a cardiac ablation, my anxiety came roaring back, I beat myself up for my anxiety and stumbling over this site tonight has helped
Jacki, thanks for writing – very sorry about the system screwing up. :-(
If you want to try to connect with any of the others here, drop me a note at dave@epatientdave.com and I’ll see if anyone is open to the idea.
Important addition, IMO – thanks to the friend who sent this PTS article in Vanity Fair. It contains a lot of relatively new information about the condition, now that more studies have been published.
“PTS”? Yes: “Because PTSD is so adaptive, many have begun leaving the word “disorder” out of the term to avoid stigmatizing a basically healthy reaction.”
On Facebook I posted some links about another, evolutionary view into the nature of the condition – “the polyvagal theory” presented by Steven Porges at UNC Chapel Hill.
Healthline says
the vagus nerve is “part of the involuntary nervous system and commands unconscious body procedures, such as keeping the heart rate constant and controlling food digestion.” I’m in over my head here so I might have this a bit wrong, but in short, the asserts that it ain’t just ONE vagus nerve – from Wikipedia:
This is fascinating to me: when the evolved structures fail (which I imagine would be a trauma you can’t get away from, as in war), the primitive structures take over.
The “polyvagal” idea seems not to be widely known or accepted – for instance it’s not mentioned in the Healthline article – but it wouldn’t be the first time the scientific establishment has taken a lonnnng time to accept a new insight.
My Facebook thread (no login required) with a few comments is here. But I think just the idea itself is useful for this discussion.
My psychologist friend Lucy Jo Palladino pointed me to this. She’s seen EMDR have remarkable (and fast) results, which is really puzzling because unlike most psychotherapies it does not involve untangling the source of a trauma. And that makes sense, I guess, if the trauma is rooted in the un-evolved / less-complex primitive part of the nerve.
Very interesting, Dave. In my case, here’s what happened in a nutshell:
“I was a 5-year-old child who had a tonsillectomy without sufficient sedation, contracted infectious hepatitis from that operation and wound up back in the hospital 12 weeks later on death’s door, and spent 6 weeks in isolation there (including no parents), during which time she came within hours of dying when her liver quit working and her kidneys shut down.”
What struck me about the Vanity Fair article was the emphasis on taking the person who has been in the middle of a very traumatic situation and helping them cope by embedding them in a community, instead of isolating them. Given that 12 weeks after my initial trauma I was put into literal isolation in the hospital for 6 weeks…I can see why the trauma stuck. And beyond that, of course, were the various experiences while I was in the hospital for those 6 weeks, which were in themselves not always very pleasant.
A very insightful read.
Right now I am facing having an upper endoscopy, and am in the middle of a rather severe PTSD attack. It’s been going on for a week. The whole “vagal nerve” thing is also interesting, in this regard. I simply cannot will myself to stop having all of the physiological manifestations of anxiety. My BP yesterday was 30 points higher than normal, and my heart rate 20 points higher than normal. And I have other symptoms. This is a primitive physiological response.
Holy CRAP, Brenda! I can barely imagine that 5 year old’s experience!
Yes it’s a primitive response. Holy crap. Of course you can’t “will yourself” to stop this reaction.
I feel like I want to “call a code” on your current episode! What do your current providers or insurance say – have you asked for a PTS consult??
Anyone else – do you know where to get expert consults on PTSD?
Dave, thank you for that validation.
I actually have a wonderful, WONDERFUL psychiatrist. He’s the oncology shrink where I got my cancer treatment. Because this PTSD complicated my cancer treatment in many ways (some for my treatment team, but a bunch more for me, personally), he has been in an excellent position to understand all sides of the situation. He also has background experience in treating trauma. I love him dearly.
Though I’m trying to manage a bad PTSD flare this past week, the exchanges I’ve had here on this site kinda have me laughing at myself. I mean, I was reading about how the young brain is not fully developed, and traumatic experiences inflicted upon a young brain can actually change the brain’s development in certain respects. In other words, I’m brain damaged, right?!!! LOL! That sounds about right.
When I have an active PTSD flare, I cannot just will it away. It has a life of its own. And when I don’t have an active flare, I still have heightened levels of arousal in potentially threatening situations. I try to manage that arousal when I am facing invasive medical situations so that it doesn’t escalate into a full-fledged PTSD flare…but some doctors take my management attempts as evidence that I am being adversarial, micromanaging them, and attempting to make them practice bad medicine. So it is difficult.
Right now, my GI doctor seems to really get it, and I am grateful as hell (oops! heck!) for him. I think he’s a great guy.
And as for calling code for me…I spoke with my shrink yesterday. More than an hour of talk therapy (bless him, at the end of a busy day for him), and I’m starting on Klonopin. I took .25 mg last night, but it didn’t have a huge effect, so I’m going to take .5 mg tonight.
I have decided to try to set up a website for medical PTSD. I’ve bought the domain name and a hosting service, and a friend is going to help me get it launched. I’ve never done something like this before, so I’m not sure what the site needs to do or be, in any kind of detail. Here’s what I told my friend to put on the opening page:
“We accept and acknowledge the likelihood of long-term trauma resulting from rape.
“We accept and acknowledge the likelihood of long-term trauma resulting from child abuse.
“We accept and acknowledge the likelihood of long-term trauma resulting from war.
“But we only barely accept and acknowledge long-term trauma that can result from medical treatment—-no matter how necessary that treatment may have been at the time. When the medical treatment happens to us in our childhood, it has the potential to leave particularly pernicious scars.
“MedicalPTSD.com is dedicated to providing a source of information and becoming a community of support for people who suffer from medical Post Traumatic Stress (Disorder), whether that trauma has resulted from a recent encounter with the medical system or was set in motion decades ago in childhood.”
Does anyone here have any constructive, creative input for me? I’m open to all suggestions, given that I have so little idea what I’m doing.
And thanks!
This is pretty bold of you! Go for it!
Is your friend using WordPress for the site? That’s what this site uses, and e-patients.net, and participatorymedicine.org. WordPress was created as a blog but has been marvelously expanded; you can add non-blog “pages,” which work the same as a blog post except you can put them on a menu … when pages are created the same as a blog post it makes it pretty easy to expand your own skills.
I can say from experience that you’re probably helping yourself already just by taking action in defiance of your “disabling” condition … but that’s a rational view, which (if I understand correctly) isn’t likely to touch the pre-rational side of the vagas nerve.
You might benefit from joining the Society http://www.participatorymedicine.org/join-us so you can talk with other patients who’ve done similar things, in the member area. It’s only $30, and if you want to join but can’t afford it they/we will let you have a “scholarship” so it’s free.
One thing you’ll want to do is compile a simple list of resources – here’s a Google search for “medical PTSD” https://www.google.com/search?q=medical+ptsd&oq=medical+ptsd … look, one of the first results is this:
The National Child Traumatic Stress Network – Medical Trauma
Looks like some amazingly relevant things, if you haven’t found it already, e.g.:
You are bold – keep it up!
Dave, I will be joining the Society for Participatory Medicine. Without doubt. Thank you. And thanks for my GI doc for pointing me in that direction, as well.
Oh wow! This is very exciting! Most of my PTSD is as a result of negative experiences in healthcare (mine started as an early adult…)
Hi, Guest. I’m wondering if there is a qualitative or quantitative difference in the PTSD of those who have lived with it for many years as an adult due to (early) childhood medical traumas, and those who have lived with it for somewhat fewer years, having acquired it in adulthood.
I have noted that numbers of the women I know who have gone through treatment for breast cancer come out of it with some kind of medical PTSD. But they do seem to be aware of what is happening to them, when it strikes. The symptoms are very overt. Very distressing, as a result! But very overt. They are never hidden from the women who suffer from them.
I wonder if an older age at onset makes a difference in how the PTSD is understood and processed as an experience, as compared to when it begins in various phases of childhood.
Your experience as an adult who first acquired medPTSD due to negative experiences in early adulthood would be interesting to try to plug into this larger question. How old are you now? How long as it been since your “early adulthood”? Do you have any insights into this question about how PTSD gets understood and processed as a young adult (at onset) that you could share?
This is such a fantastic post and conversation. The experiences and interactions that folks have with the healthcare system shape their outcome in more ways than most appreciate. There’s a bit of ptsd when a newborn is diagnosed with a chronic and fatal illness, and you have to take time to mourn the loss of what you expected but too often there isn’t the opportunity to do that. I read a great article earlier today about how the first question hat you’re typically asked upon entering a hospital is how you would like to pay for your service. Many people are struggling with outrageous bills from previous traumatic experiences only to be facing something new with worry and doubt already in their minds. Such an important conversation to have, thanks for sharing!
Geez, Dave! I have looked for stuff on childhood medical trauma but I don’t think I found this. (Granted, I looked a couple of years ago…not recently.)
Yes, my friend is using WordPress. I’m a total novice at this. I mean, totally dumb as a bag of hammers about it! So there will be a learning curve, and I will be stressed. But it will be a different kind of stress. The kind I can walk away from and then come back the next day to try, try again. Not like PTSD.
It’s a great thing to focus on current trauma that a child may be experiencing and address that before it becomes a permanent feature of the child’s psyche, if possible. That seems to be where most information on medical trauma and children focuses. If my pre-school-age grandchildren were facing medical situations, you bet I’d be all over this. (When my now-adult children where hospitalized in their younger years, I never allowed them to be left alone there. Clearly an adaptive response to my own trauma!)
In the meantime, for obvious reasons, I’m really focused on “Yeah, but I ain’t a child anymore. What about folks like me?” There seems to be so little out there for adult survivors of childhood medical trauma. I really want to push this end of the envelope, without neglecting the other ends. Thanks for the encouragement and the leads.
> dumb as a bag of hammers
Let me point out that a bag of hammers can be pretty potent and get a lot of work done, when harnessed by a conscious mind with a plan.
> I ain’t a child anymore
I would very, very, very strongly encourage you to reach out to that group and SAY THAT. We’ve already seen on this thread that it didn’t take much scratchin’ to bring a whole lot of worms to the surface – I bet this is a big opportunity, and the PTS provider community should put some attention here.
They should be interested, it will become a line of business for them, especially if the “further study” they mentioned proves fruitful so the dx gets confirmed.
You know, Erin, that’s something I have wondered about. How did my parents pay for it all, back in the late 1950s? Two and a half years before my trauma, my parents lost twin girls at birth. My brother was born about 8 months before my trauma, but early-on he got pneumonia and had to be hospitalized. So by the time I went in for my tonsilectomy, they had already had about three solid years of multiple, major hospital encounters and the associated bills. How can that not have been mind-numbingly stressful for them?
Brenda, I note that every comment you leave is a new top-level comment, not attached to Erin’s (or mine or whoever’s).
If you use the Reply link on the comment you’re replying to, yours will be indented and attached to its parent.
If that’s a hassle, don’t worry about it.
Agh! See, Dave! I told you I was dumber than a bag of hammers at all this!
I looked around for the “reply” link at the bottom of each post to which I wanted to respond. I didn’t find one. But there was the box (not a link) at the bottom for posting a comment, so that’s what I used. Which put my responses at the top level.
But the link is not at the bottom! It’s at the top of each post.
OK. For this response I used the “reply” link. We’ll see if I get there, with this one.
And ha ha ha, when it’s EXPLAINED to you clearly, your hammer-head brain is perfectly capable.
So many “failures” to do something (in healthcare and everywhere) boil down to the fact that they didn’t make it EASY to do the right thing, didn’t make it OBVIOUS. How ironic that they then blame the USER.
In Let Patients Help, in the chapter “Make it easy to do the right thing,” I tell the story of an engineer I once worked with who responded to a usability complaint by saying this gem:
“It’s perfectly easy once you understand it.”
I mean, seriously, he said that. (That was 20 years ago… today any website that’s hard to use will go out of business, right?)
In a way this is funny, Dave, but in a way it’s indicative of my mental discombobulation with the PTSD right now. I’m hyper-vigilant…but not about the right things! I have trouble concentrating on those.
I have a question for those who have responded to say that they, too, suffer from medical PTSD. Namely, how do you work with your care providers to prove that you have a co-morbid health condition (medical PTSD) that must be taken into account in your treatment, and that your behaviors with him/her are not necessarily because you are being willfully “bad,” but because you are coping with your medPTSD as best you can?
I have a friend who is a semi-retired radiation oncologist. I was put in touch with him when I suspected I had cancer (and he was still working full time), and he was invaluable in helping me understand cancer and the things that were about to happen to me. We have stayed in touch these last six years–more so after he himself developed cancer and had to undergo not just one but two bone marrow transplants (hence, his now being semi-retired). I have come to count him a good friend, and been very grateful for his willingness to talk to me about cancer and educate me about it.
I had asked him to be with me during my upcoming GI procedure (upper endo), but after an initial yes, he said no because he feels that I am being a bad patient toward my GI specialist. He feels I am trying to micromanage how the specialist cares for me and am asking the specialist to practice “bad medicine.”
He told me, “You fought your doctors tooth and nail throughout your entire cancer treatment. You treated them badly and they did their best to ignore you and treat you in the best way possible….I think you have no insight at all as to how you treated your physicians. Just for example, you fired at least three of the most caring, conscientious, and brilliant oncologists that I have ever met. I think that was outrageous behavior on your part, but you are clearly unable to see that. I have lots of email from you where you make it very clear you regard the physicians as the enemy. You want to make deals with them to do things that they know would be bad for you and inappropriate medicine. You wanted to micromanage them when you knew almost nothing about what they were doing. Somehow they managed to cure you of a most dreadful disease anyway as I said, ignoring you as much as they could. Had they done what you wanted you would have died years ago and not a good death. Now you want to start this whole process again for a simple endoscopy….”
The data upon which he is basing his assessment of my behavior during my cancer treatment is flawed. I did not fire “at least three” oncologists. I fired one. And the second one asked to not be my oncologist, so I let her go. I did not ask them to ‘practice bad medicine’–unless you mean that the agreement the surgeon and I made before my mastectomy (which I wrote into my consent forms) was ultimately not honored by the surgeon. If my asking for the agreement was bad medicine, then the surgeon should not have said yes to it to begin with.
I have gotten the clear impression from the exchange my friend and I have had, lately, that his impression of who I am, as a patient, is based upon a picture painted during the hospital’s weekly Morbidity and Mortality meetings. A picture that is clearly significantly flawed by poor data.
I have tried to make it clear to my friend that I suffer from medical PTSD and that this has driven events in my life for decades, including events during my cancer treatment. Today, he has made it clear to me, in return, that he doesn’t buy it. I’ve asked him to pull the PDFs of a couple of medical journal articles about childhood medical trauma and medical PTSD. (I have read many, many medical journal articles before this–but on cancer.) He pulled one, then said:
“Do you really think it is a good idea to do this kind of research on yourself? What you seem to be doing is reinforcing certain conclusions you have already made. You will build your case interally, but I don’t know if this will help you. I hope it does.”
In other words, I read this as him saying that he thinks I’ve convinced myself I have medical PTSD in order to excuse what was purely “bad behavior” during my cancer treatments, and my attempts to read some of the medical literature on this subject is just me trying to convince myself that this is so. He is suggesting that I don’t really have a co-morbid psychological condition, but I was simply behaving badly then (even if the ways he identifies as my bad behavior are not altogether based in the facts of what really happened but are rather based on imputed motives given to me by others) and am looking for an excuse for my “bad behavior” now with my GI specialist.
I have to say that his attitude hurts my feelings. I have considered him a friend, and to learn that he has this attitude toward me, and that he frankly doesn’t believe me…. Well, it hurts.
But it also triggers that PTSD anxiety. I’m back to taking Klonopin again today, to try to manage it. I feel like he is not just telling me what HE thinks, but he is revealing what the entire medical staff at the cancer hospital have been thinking about me for all these years. And his reluctance to actually believe that there is a psychological issue here and not just a character flaw— That is pretty much par for the course in most medical settings, for those of us with medical PTSD.
So to my fellow sufferers, I ask: How do you deal with situations like this, when you are seeking medical care? I feel very lucky that my GI specialist does NOT seem to share my friend’s point of view. He takes my co-morbid medPTSD very seriously.
But my GI specialist is the exception, not the rule, in the medical world.
So how do all of you get your medical providers to believe in and act with respect toward your medical PTSD issues?
Brenda,
This is an amazing comment. I’m going to reply because it strongly resembles something that happened to me recently. In my case, I was certain that what a friend said was different from what I saw later, after my own reaction had worn off.
Prolog: I have no knowledge of what ACTUALLY happened in your interactions with the oncs (I wasn’t there), so I can’t possibly evaluate your view of it, nor compare it to your GI friend’s view. And I have no expertise about PTS, as I’ve said. So everything here is only about the words in the comment, not about what actually happened.
Looking only at your words here, it looks like you’re exhibiting one of PTS’s classic signs: absolute rigidity, which is what you get when the reptilian part of the vagal system takes over. Not only are the other docs wrong; your FRIEND doc, whom you’ve always trusted, is wrong in disagreeing with you about them. There’s not the slightest possibilty that those docs were right about something.
If I understand the polyvagal thing correctly, this is exactly what we’d expect when the reptilian part of the vagal system takes over in such moments (according to Porges): it trumps and vetos the thinking part, hijacking the entire brain; it becomes the only voice in the PA system. (This is exactly how I felt in my recent episode; I was certain that a long friendship must end, because it simply wasn’t possible that what the friend said could be tolerated. In my case it took weeks for that sensation to get processed, at which point the “hijacking” slowly cleared and the usual me was back.)
I know saying this might lead you to conclude that I too have joined the enemy. But as I say, I’m in no position to assess “the facts of the case.” I’m speaking here to the other part of you, the part that reached out for help.
I don’t have any suggestions or requests – I’m just pointing to the pattern, which may seem impossible to see. Or I may be all wet.
OK, Dave. I have told my friend (radiation onc, not GI doc) that there are things I regret about my behavior when I was in cancer treatment, but they are probably not the same things that the docs in the M&M meetings (as my doc friend was) would pick out. I have not gone over them with him, because I didn’t want to get into an even more involved email discussion about what did and did not happen.
So I am not entirely rigid about the accusation that I was horrible to my onc docs. I recognize that it would have been better had some things that I did never been done. I also know, though, that I was doing the best I could at the time given the internal resources I had to work with. And I try not to beat myself up about it too badly. (Right now, I’m not resilient enough to go beating myself up too seriously for my behaviors when having a PTSD flare.)
In fact, I repeatedly asked my doc friend for specifics of what I did that was so bad, so that I could know what THEY thought I did…and he responded with the “you fired at least three oncologists” statement (which is incorrect) and then the more general charges, again, that I had asked them to practice bad medicine and tried to micromanage them. No specifics about how/when I did those things…just the general charges. Even though I pressed him again for specifics.
However…I am taking your comment about reacting from the reptilian brain seriously for thought. I know that my doc friend’s comments keep triggering the reptilian part of me. I recognize that this is happening. So to that extent, I can see what you are saying.
I think his comments keep triggering me because there is no reciprocity in them. He never says, “Well, I can see your point. To you, it looked and felt like X, and I can see some logic in that given your frame of reference. But from where we were sitting, here’s what it looked like….” That was pretty much the same thing that happened in cancer treatment. I kept trying to get them to understand how exceptionally scary it was for me to have to interact with them at all, much less interact for cancer treatment, and they kept brushing me off…which then elicited more panic and anxiety in me…. A vicious circle. (Though there were two interactions with medical personnel that were not like that–two interactions where I felt that they understood and respected what I was trying to say to them–and when that happened, my guard immediately went down and we went on to discuss the undiscussable things, the things I so desperately did not want to happen but had to happen, anyway.)
The fact, Dave, that you reach this assessment of the situation based solely on my own words (and those I reported from my friend)…this gives me pause. Something is happening here that I am not seeing. I take your words not as “friendly fire” — damage coming from someone you thought was on your side — but more like Cher in *Moonstruck* when she slapped Nicolas Cage and said those immortal words, “Snap out of it!”
For those fellow sufferers who have hung on this long in this lengthy conversational thread, let me repeat my final question, above, but with a twist:
When you have to interact with the medical community, do you tell them about your medical PTSD? How do you discuss this with them? How do you introduce the concept and explain what it means in terms of your care with them? At what point in your interactions do you have this discussion?
Do they believe you?
If so, to what extent are they able to work with your condition?
If not, what do you do next? Do you find another physician, or do you have strategies for working with the current one(s) to bring them around to working with you given your medPTSD?
I don’t really have “a strategy” per se, and clearly I could use some advice from those who have made more progress with this than I have.
I wasn’t clear about my recent episode – it wasn’t medical.
I honestly don’t know what I’d do in such a situation – my sense is that I *can’t* really know, because a different being (so to speak) took over, and I can’t speak for that one. Literally.
What I did, in this event, was slowly and VERY WATCHFULLY “listen” to the outreach emails I received, and VERY CAREFULLY respond in tiny doses. In hindsight, it really felt like the usual “me” was starting to return to the control room and sniff around to assess whether things were really okay. Eventually we talked and established that what I was certain had happened, hadn’t, with photographic evidence. Really interesting. (It reallly took something on the friend’s part to work through it.)
(In writing all this I’m keenly aware that a real PTS expert might be reading and thinking “This guy’s an idiot.” So again I emphasize that this is just my sense of the experience, blended with the bits I’ve read and experienced, all listed above.)
I can identify similar kinds of situations with my cancer docs, Dave. Because I was so stressed and really unable to hear them accurately all the time, when I’d have consults with them — or at least I was afraid I wouldn’t be able to hear and remember everything accurately — I digitally recorded our consults. There are a couple of times when those recordings came in extremely handy.
Once was in the aftermath of my mastectomy, when I was able to go back and clearly verify that my surgeon had violated an agreement she made with me in the weeks before surgery–an agreement that I wrote into my consent forms. There is no mistake in my perception. She goofed big-time. Violated my trust in her.
But there was another thing that she did not follow through on, and when I listened to my recording of our consults, I realized that she had misunderstood what I was asking her because I was not sufficiently clear in what I was saying. I realized that my query could be taken in more than one way, and she had taken it in a way I hadn’t intended. The fault, there, lay exclusively with me.
With another oncologist, I used my recording of our consult to go back and gain a new understanding of the issue we had discussed, which was very emotionally charged for me. I actually transcribed the recording and read over and over what she had actually said, as opposed to what I remembered her saying or thought I heard her say… And I gained a new understanding of an important way that my own thinking had been skewed. I later verified this with her, and she confirmed that my new understanding was, in fact, the proper one.
So I do understand this issue of getting it wrong and going back and realizing that you got it wrong. With my doctor-friend, however, I don’t have it wrong. We have had multiple exchanges about this in the last couple of weeks, each of us clarifying what we mean–and in the end, we are on opposite sides. He thinks my behavior was and currently is reprehensible viz-a-viz my doctors.
My doctor-friend is the last person who is likely to join the Society for Participatory Medicine. He likens the doctor/patient relationship to taking a trip in a jet. You buy your ticket, get on the plane, take your seat, be quiet, and let the pilot fly the plane because he knows how to do it and you don’t.
I liken the doctor/patient relationship (if an airplane analogy must be used), to a person contracting with a pilot for the use of his plane and his skill to get from Point A to Point B. You negotiate with the pilot about certain things that may be valuable to you, in making the trip (type of plane used; accommodations on the plane; route to take; intermediate stops to make; how high or how fast to fly….). You rely on the pilot to refuse to make some accommodations if it means that the plane cannot be flown safely, but otherwise to try to accommodate your desires. The two of you reach an agreement about what is possible. And then you sign a contract together, and then he/she has an obligation to do what you both agreed would be done–unless unexpected circumstances arise in flight that make the contract untenable.
My doc-friend thinks that my analogy about the doctor-patient relationship is wrong, wrong, wrong. He thinks it’s micromanagement of the pilot, asking the pilot to fly in unsafe or even impossible circumstances from the outset, etc. As a passenger, my job is to sit down, shut up, and let the pilot do what he and he alone actually knows how to do.
My doc-friend embodies the attitudes of the vast majority of the doctors I encountered when I had my cancer treatments. And his communications with me these last couple of weeks have certainly triggered my PTSD again. But it’s not because I’m misunderstanding much in our communications.
Hence my questions (above) to my fellow medPTSD sufferers. Given that my doc-friend’s mindset is the norm in the medical world (and my GI doc’s mindset is a blessed, blessed exception!), how do you handle things?
Hi Brenda,
I did not have a traumatic event in childhood but did have an invasive aggressive tumor at the age of 38 with three children under my wings (10 months, 9, and 12). I underwent surgery and aggressive chemo treatments. I recovered from the surgeries but have not yet – 7 years later – been able to regain my calm, my focus, my coherent thoughts. I am taking sleep meds, as well as depression meds. I am working hard to try to get clarity. I have had to stop full time work but still struggle day to day. I can look at my life and tell you how wonderful it is yet I struggle to feel ok.
With all that said I have recently found a treatment that I am hopeful will help. It is called IASIS – and it is a treatment of neurological issues through micro current feedback. I am in Alaska and I don’t know where else this is offered but I have undergone just one treatment and I had clarity and calm in the afternoon which almost never happens. I have hope that it will make a long term difference. There is a website listed on my paperwork – Iasistech.com
I have so many of the symptoms you brought up and it all started with diagnosis and treatment. My brain was heavily affected by the long term stress of the battle as well as the nasty chemo. I am maintaining and finding pockets of serenity. This treatment may be able to help. I am cautiously optimistic at this point. I think it is worth you at least exploring the research.
Good luck on your journey. We all work with the what we have at the time and it appears you are continuing to try to find more pieces of the puzzle. That is always a good thing. You are changing your life and a part of the world. Keep it up and be kind to yourself for the past. All we can ever do is learn and move forward.
Lisa
Thanks, Lisa. I am working hard on trying to either have my medPTSD under control more effectively, or even to rid myself of it. I’ll look up the treatment protocol you mentioned.
And I sympathize with your plight about long-term side effects of cancer treatment. As near as I can tell, about a third of us suffer these kinds of long-term effects, while the other two-thirds recover to a near-normal (or totally normal) state after a year or two. The result is that those of us who have more long-lasting effects have to really try hard to make oncologists believe that these are treatment sequellae and not just “getting older.” I hope the IASIS continues to work for you. Regaining that inner equilibrium would be a valuable asset, I know.
Thank you very much, I also have medical ptsd from an “imp” (invasive medical procedure”, it has been a long and very hard battle. When it first surfaced/memory, almost thirty years ago, I became suicidal. I’ve had trouble with it, on and off, ever since. One of the biggest problems I’ve had is to get affirmation and acceptance as to the reality of it. It, the pain, was minimized, as a child. I’ve had flashbacks/visual, not too many, but the most intrusive and problematic have been the somatic/feel backs. There are websites and blogs that discuss feel backs, and just knowing that others have had them, helps. Being in therapy with a good trauma counselor is another tool. I’ve found lexapro is good for the anxiety. I’ve also found that adderol? also, in addition to my adhd, also helps the ptsd, possibly in that it activates the frontal lobes, and it also helps keep me focused on other things besides the ptsd. One of the most healing, and self-nurtuing, is a video/meditation by Stephen (sp?) Jacobson on you tube, “PTSD mediation.” It honors and validates, and builds hope and helps the self-soothing. I took a workshop in Seattle, and the woman there, said that it’s important not to hyperarouse (retraumatize), nor to hypoarouse (stuff it and deny it), but to learn, first, to modulate and self-soothe. If this occurs, she says, it can change the affect/feelings around the trauma, and modify them. Self-care is vital, sleep, even if you need medication to help, briefly, as well as excercise, massage, and I also truly value the sauna at the local fitness center, when nothing else seems to work, soaking in the hot water, and sometimes going from the hot pool, to the cold swimming pool, manages to put me back in the present and my body in a healthy way. Breath, relax, aware, value yourself, and empathy for your self. BRAVE, take good care, and know that you are not alone, and are loved by many.