I HAVE PTSD
And I shouldn’t have had to diagnose it myself.
I still find it unbelievable that, in all that has happened to me since the chest pains Feb. 4, 2017, not one medical person has 1) asked me how I was doing mentally, or 2) warned me that I was at risk for PTSD.
I even, at one point recently, called the cardiologists’ office, and asked if they had anyone on staff who handled, you know, the psychological side of things. Nope.
I do want to state first and foremost that I am grateful to be alive. Grateful that medical personnel eventually managed to figure out what was wrong with me – a 95% blocked artery that was causing the chest pain, I assume, since the pain went away when they finally put that third stent in on the third catheterization in two weeks. It would be churlish not to be grateful for being alive.
I am also lucky to not have been visibly damaged – no heart surgery scar, for example.
It doesn’t help.
‘Trauma’ includes medical trauma
There are a lot of websites out there dedicated to what I’ll have to call ‘classical’ PTSD: the reaction some soldiers have to being in combat, the reaction some people will have to being raped or mugged. The classical form, if I may, includes things like flashbacks and nightmares, and has been popularized on TV as almost an alternate reality, where the person with PTSD almost has an excuse for overreacting to loud noises by re-enacting the original trauma.
But medical procedures can be intensely stressful, and medical procedures done on an emergency basis even more so.
A couple of quotes might help:
From Medical Disorders as a Cause of Psychological Trauma and Posttraumatic Stress Disorder:
Research has increasingly targeted serious or life-threatening illnesses as traumatic events, and a growing literature on PTSD among medical patients has developed (e.g. cancer, myocardial infarct, HIV diagnosis).
From When Treatment Becomes Trauma: Defining, Preventing, and Transforming Medical Trauma
Trauma experienced as a result of medical procedures,
illnesses, and hospital stays can have lasting effects. Those who experience
medical trauma can develop clinically significant reactions such as PTSD,
anxiety, depression, complicated grief, and somatic complaints.
Women are more than twice as likely to develop PTSD
The numbers in general are 10% of women and 4% of men will develop PTSD during their lifetime (fuzzy numbers – not sure of the PTSD definition used), which probably reflects that women have more stressors such as problems associated with pregnancy (Caesareans, miscarriages, and even ‘normal’ birth can be quite traumatic) and rape, as well as being socialized to ‘not make a fuss.’
From Facts About Women and Trauma:
Although the majority of individuals will be able to absorb the trauma over time, many survivors will experience long-lasting problems.
Approximately 8% of survivors will develop Posttraumatic Stress Disorder (PTSD).
Many survivors currently living with PTSD experience symptoms that are both chronic and severe. These include: nightmares, insomnia, somatic disturbances, difficulty with intimate relationships, fear, anxiety, anger, shame, aggression, suicidal behaviors, loss of trust, and isolation.
Psychological disorders may also occur in conjunction with posttraumatic stress including depression, anxiety, and alcohol/substance abuse problems.
Research indicates that women are twice as likely to develop Posttraumatic Stress Disorder (PTSD), experience a longer duration of posttraumatic symptoms, and display more sensitivity to stimuli that remind them of the trauma.
And cardiac events in women can be extra stressful
From the HeartSisters blog (where you can find a large number of articles by searching for PTSD):
By the latest account, one in eight heart attack survivors experiences a reaction called post-traumatic stress disorder (PTSD). Although PTSD is usually associated with extreme trauma such as war, rape or a natural disaster, heart attack survivors can experience the same key symptoms: flashbacks that occur as nightmares or intrusive thoughts. As a result, the survivor actively tries to avoid being reminded of the event and becomes hyper-vigilant worrying that it will happen again.
It’s a high price to pay for having your life spared.
In the three studies that reported clinical outcomes, heart attack survivors with PTSD had double the risk of dying or experiencing a second heart attack as those without PTSD. The work was published online in the journal, Public Library of Science One.
Identifying PTSD early is an important step to coping with it. The sooner treatment is started, the more likely it will be successful.
My own risk factors should have warned someone:
Since my energy runs so low from CFS, almost anything extra will overwhelm my already-limited coping skills. I cannot suddenly manufacture more energy to cope with a crisis.
For whatever reasons, I experienced a particularly clumsy set of medical procedures which took over two weeks, three cardiac catheterizations and a nuclear stress test, and nine days in two different admissions to two hospitals each time, before they found and stented the right arterial blockage. Instead of going in for chest pains, having the catheterization, and waking up with the proper place stented – which should have happened on the first two days, the procedure was prolonged beyond anything reasonable. I still have no satisfactory explanation for this.
And, because of the same CFS, and which I warned them about, I have had a constant and continuous string of side effects from the medicines prescribed – and eventually withdrawn. I told them I always overreact to meds, and usually can’t tolerate them, but I was required to prove that by doing so. Did I get smaller doses than they would have given someone else? I don’t know. What I do know is that my body has rejected every drug so far with violent side effects, physical AND mental, and I am still experiencing some which may be related to the last drug they really want me to take (we’ll see about that).
‘Opinionated, over-educated female suddenly experiences total loss of control’ – that would have warned even me! Loss of control, by the way, makes any of the ‘consent’ forms I signed under those conditions meaningless. As well as the fiction that you actually get to choose any of what happens; I found that fiction – unwillingness of the doctors to say what I should do as if they stood behind their ‘recommendations’ – added incredibly to the stress.
Introvert suddenly having to deal with literally hundreds of new people – duh!
And the unfortunate major side effect that the meds kept me from using my main coping mechanism for stress: 3-5 half-hour naps/rests daily during which I spend most of the time doing yoga-type breathing which slows my heart rate and removes stress and allows me to process away the mental debris. Add the meds causing an increased heart rate for a nice recipe for PTSD simply from sleep deprivation.
Oh, and the pain. I cope with a large amount of pain normally on a daily basis; the increase – and them not wanting me to take additional pain medications I normally use – made excessive pain a constant companion, to the point that it was difficult to separate the pain into parts I could cope with – and all the rest. At one point I realized that I was putting up with a whole host of side effects making me a non-functional zombie, simply because those side effects didn’t hurt!
None of this is prescriptive: how do I know I have PTSD?
Here we go back to some of the symptoms and assessments, of which there are many on the web, with the caution that many if not most are for the more classical form.
From Screening for PTSD:
- I am troubled by having experienced a life-threatening event that caused intense fear and helplessness.
- I reexperience the events by repeated, distressing memories; and I have intense physical and emotional distress when I am exposed to things that remind me of the event.
- Reminders of the events affect me by avoiding activities and places or people who remind me of it; blanking on important parts of it; losing interest in significant activities of my life; sensing that my future has shrunk; and feeling my range of emotions is restricted.
- And I am troubled by problems sleeping; irritability and outbursts of anger; problems concentrating; feeling ‘on guard’; and have an exaggerated startle response.
What will I do about dealing with PTSD in myself?
There are a number of ways of dealing with PTSD which have been developed for the classic forms (and which can be, I read, amazingly effective for those who will seek help). They include talk therapy, some interesting procedures, and medications.
I am brought right smack up against my limitations again: I wouldn’t try a drug for this if you paid me, not after all the problems I’ve had with drugs recently; leaving the house another time a week to talk to someone – for a therapy which would probably take many weeks – isn’t a real possibility unless nothing else works; and I’m not new age enough to try things like the eye movement thing.
I will do as much as I can to handle this myself, now that I have a name for what is going on.
From HeartSisters again:
* UPDATE, August 13, 2013: U.S. Staff Sargent and military Medal of Honor recipient Ty Carter has launched a campaign to remove the D from PTSD: “Post Traumatic Stress Disorder is really a formal diagnosis for natural stress that one experiences after a traumatic event. The formal title of PTSD sometimes gives a false impression that the ‘disorder’ is something associated with a disease or a chemical imbalance, when in reality it is simply a biological response.
Three steps are necessary to successfully treat the condition:
• acknowledging one has symptoms
• communicating with others about it
• seeking treatment without fear of judgment
This post is the review of the first step – acknowledging my symptoms and what they mean.
The second step (yes, I told my husband, and I will tell the doctor this Thursday when I see her, trying very hard to not be judgmental) – I am communicating with anyone who reads this. And I’m hoping it will prevent distress in someone else when they realize how easily PTSD can happen, and how common it is. And that it isn’t just the classical war and rape form.
And I will, if I cannot handle it myself, seek professional help. Because those activities I used to enjoy, and my ability to write, are what was making life bearable for someone with a chronic illness and zero energy, and I’m not going to give them up without the fight of my life. For my life.
I don’t feel sorry for myself, and I’m trying hard not to feel too angry.
As always, comments are welcome. It isn’t really communicating unless it’s a two-way street.
Thank you for your post. I also believe I am struggling with PTSD – I went through a rape 7 years ago, but three years ago I underwent lung surgery, also rather emergency surgery for a freak lung infection that went septic. Both of these traumatic events occurred around the same time of year, and while I had processed parts of the first, I believe I am seriously still struggling with the later and just the culmination of grief from them both. Added to that has been strange neurological muscle tremors and chronic pain issues to which doctors have found no answer – and so I am stuck feeling traumatized in pain and confused (and frankly rather young for all of this at 31), and yet unable to figure out how to get better and still function as necessary. I really appreciated your post, because it makes me feel like I am not alone and like it is legitimate to say I have this and it isn’t just me being pathetic. I hope you improve and find ways to heal – I can share a couple of things I have tried or am trying. For one – you mentioned you aren’t up for the eye-movement thing – EMDR I believe it is called. It can also be done just with tapping on the upper legs while you visualize what you went through. I did try that for the rape – I think it helped some, but unfortunately it was so expensive where I live I had to stop. But something that might be even better for an introvert – cranio-sacral therapy. I believe that so much of my own trauma is trapped in my body, and this is a very gentle technique (you don’t have to talk at all or get undressed or anything), and at the least it is incredibly relaxing, at most it may help your body release some of the trauma as well as help you feel less pain. I wish you all the best.
I’m sorry you’re dealing with all this – I can’t imagine having to deal with rape. And to add some medical trauma on top of that, well, you’ve got a lot to handle.
I’m pretty sure my method will involve writing (more), and possibly talking. Because of my severely limited energy, and the many demands on it, the concept of trying to find a therapist, establishing a relationship, and talking things out with someone else (which also usually involves having to tell them NO a lot – therapists are no better than most people at listening) is something that gives me pause. Just to go would require me to get dressed an leave the house – a HUGE expenditure of energy for me. For something which probably wouldn’t start helping, if it did, for many sessions (I’ve been in therapy before). Can’t right now, even if I wanted to, which I don’t.
The disruption to what little schedule I have, and my own writing, would be devastating, so I’m not likely to try any of the things you mention. Not for a great while.
I say this, and I also say that if it’s necessary – because my current method of catching what’s going on and talking sense into it every time stops working – I will find the time. And the energy. But it’s my choice, because many therapists don’t even know about the possibility of medical trauma (and the whole cardiologist practice pretends it doesn’t exist), and I’d have to wade through that in finding someone, too.
I understand about the physical symptoms – that’s exactly what I’m using now to cue myself that I need to think/write/talk.
So I hope all this works for you, and you find some peace.
All I can offer is sympathy and virtual hugs. The suffering is yours, but you are not alone.
Most appreciated, Jennifer. Friends are good to have.
LikeLiked by 2 people
I’m so sorry all this has happened to you. It’s outrageous that an already stressful event has been turned into a nightmare by medical carelessness (in more than one sense of the word). I’m reminded of the time my elderly mother went through three emergency rooms and a five-day stay in a hospital, being treated for constipation WHEN SHE HAD PNEUMONIA. Her real doctor finally got back in town and took matters in hand. Mom was in the hospital on her birthday, and the doctor bought her a shawl and a bird statue and had the nurses give them to her from them, because of some rule or other. THAT’S a doctor!
Dear Alicia, I wish I could do something to shield you and heal you. If I could, I would.
Your poor mother! Nobody listened to her breathing or her lungs in that time? How can you miss pneumonia for FIVE days? Boggles the mind.
Thanks for your support – it would have been lovely to have you there. My poor husband drove over 40 min each way twice a day to be with me. He was exhausted.
Unfortunately, these stories are too common. Happenings, not stories – stories are not necessarily true.
But you understand why I didn’t feel safe, except from possibly major harm like a heart attack happening right on their watch.
They are busy, cost have to be contained, and somewhere along the way nurses decided on 3 12-hour shifts instead of a 5-day workweek, and I think it is too stressful for those long hours for many of them.
I understand – they want to have a life out of the hospital – but I don’t think it’s necessarily good for the patients.
My ‘caretakers’ over half of the time wouldn’t even post their name in my room. It gets very impersonal, small but critical things (like not telling me to push, which led to a major bleed, huge amount of pain, the repetition of the WHOLE protocol to close the hole they made in my femoral artery on what was supposed to be my last day, so I had to stay ANOTHER whole day in the hospital)…
It adds up, you have no control, and you’re too scared to give anything near true informed consent.
If it were always successful at saving lives, we wouldn’t complain, but your mom, my MIL, and I were NOT taken care of properly, and WE suffered. I’m sorry they’re tired – I’ve lived, ignored by the medical profession, with exhaustion for almost three decades.
So: glad I’m alive, and wondering how I ended up paying so much for it.
But glad I’m alive – and not able to write yet. Better blood flow, supposedly – but can’t write.
And doctor only cares that I continue taking the drug which in 2011 was the second biggest revenue producer in the WORLD.
Yeah, my mom: They did listen to her lungs, and they took x-rays and CT scans and they STILL missed it. I think, because she DID have a bowel impaction, they just treated the obvious and didn’t look any further. AS YOU WELL KNOW, if you aren’t textbook, the production line (if metaphors were cocktails, I’d be the world’s best bartender) simply can’t see your problem.
THAT’s actually scarier: they did what they should have done, and still missed your mom’s pneumonia. Wow.
I’m living proof that happens, too: they did all they should – 4 different procedures – and the only reason they kept at it is that the one irritating doctor kept insisting my pain was cardiac. I guess (as I told the doctor at yesterday’s visit) I owe my life to his stubbornness. I never credited him with bad intentions, but he would have done FAR better if he’d just SHOWED me what he meant when he said my EKG was abnormal. I would have believed DATA far sooner than his lame explanations, which went on for hours, and completely bewildered me in the mental state I was in. That and the fact that the pain was really scary, even if it had turned out NOT to be cardiac. Mule kick in chest should be taken very seriously. As he did. When all this is over, I shall write several thank you notes; his will be one (but I will mention he should have showed me data instead of trying to talk me to death. Ditto the guy in the hospital between the second and third catheterization: show me the data, and STOP TALKING – I was a zombie, and it was further punishment, and they really should have known it.
Glad your mom’s doctor knew what to do. And I KEEP turning up in the tiny outlier classes; even the ‘congenital anomaly’ I have, where the left circum flex artery starts from its own ostium (like a beginning vestibule) instead of from the right? anterior descending artery like most other people – it is still a 1 in 200 people defect, and should not have been that big a surprise to them. I think they just saw a smaller but far more obvious blockage or two, and stented those, and then were surprised. So I’m lucky, I guess. I don’t feel lucky today – I’m having very bad full body pain, and I’m pretty sure its the one drug they don’t want me off yet. Sigh.
Most patients don’t want the data and wouldn’t understand it if they saw it. You’re an outlier in many ways, mostly amazing.
If my brain had been on, AT ALL, I would have told him (and all the others) to SHOW me what they meant on their EKGs, etc. But they had effectively ruined my ability to think well before that point – with the very cocktail of drugs they insisted I take at the hospital.
I AM an outlier. And right now I’m an outlier in so much pain she can’t think – again. Sheesh! How many of these do I need to survive? The stress is pretty high, and I have a lot of techniques I’m using to deal with pain, stress, AND fear – they’re working, but just barely.
Pray that somehow I’ve over-exercised, and this isn’t a drug reaction. I’m not moving today or tomorrow to see if that’s the case. It’s a very small probability, but remotely possible.
Here’s hoping! ~hope hope hope~
LikeLiked by 1 person
Mary Sisson here–I’m so sorry that you’re having such a hard time! Hang in there!
Glad you dropped by, Mary – I don’t seem to be able to comment on your blog!
Hanging in – even though I haven’t had a working brain in DAYS, maybe WEEKS, is hard. I need to be off EVERYTHING to see if it’s the meds – I have no idea what else it could be because I should have BETTER blood flow, and thus BETTER cognition right now.
Will brainstorm with cardiologist tomorrow – and she’d better have some very good ideas, and they’d better NOT be medication.
Now I know why people stop drugs that might be helping them – because they can’t stand the side effects, or the process. Doctors have no time and no patience and no skill.
Hm–I haven’t use that platform for blogging before, so I’m not that familiar with it. I’ve changed a couple of the settings–fingers crossed that that will make it possible for people to comment!
It’s all I can do.
Yeah, I don’t question this at all. As I have read your accounts, >>> I <<< have felt the trauma. And no, you shouldn't take another bloody pill for it. I have other PTSD, but as long as we're being candid, I've never fully recovered from the SHOCK of being told certain things at the dr or the hospital. I won't claim PTSD, but I would definitely claim trauma if prompted, as I was from this post. I was just chatting about a particular circumstance with a girlfriend last week. She'd had to have emergency c-section, and I'd had to have emergency gallbladder removal, and we both went outside to call our mothers, and we both were paged for leaving the hospital, and we both were scared to death and surprised to wake up alive after. It was a trauma. We too are glad to be alive, but it was quite a shock at the time(s). We never had that "Oh I'm alive, thank God I'm alive!" moment after any other anesthesia.
There's something there.
What you've been through is ALAWT.
I've got plenty of anecdotal evidence that EMDR is tops for treating PTSD. I hope you get some help, no matter the path.
I’m glad I figured it out – it is too much to hope for it to go away in six months or so. I don’t know if I’ll need professional help – or can afford the energy expenditure – but getting it all started was very important for getting it solved. You have no idea how much reading I’ve been doing!
Your HTML made the comment not appear after the I, so I missed part of it.
I understand exactly, as I’ve had similar things happen before: at your most vulnerable, the healthy, casual staff cut you off at the knees – never realizing or caring that they’ve done huge damage. ‘First do no harm’ is more observed in the breach.
I’m not doing anything yet but writing and gathering all the pieces, but that’s already helped. I’ll see how the doctor visit goes – I still don’t have my brain back and it’s eating away at my self-confidence.
LikeLiked by 1 person
Anger is a normal and reasonable response, but only up to a point. It takes too much of the energy needed to take positive steps. Maybe I’ve avoided what might be a normal reaction to finding out I have a serious heart condition by objectifying it, and the loss of control about what was done to my body while in the hospital. On the other hand, having realized that there actually *was* trauma from being made homeless by a fire, moving to another state, and changing my life in every possible way, I have to consider that PTSD can sometimes express itself in more subtle ways than are usually taken into account. Logically, the mere discovery of having heart disease has to be stressful.
But the failure of professionals to take any such problem into account – or even to consider that other physical factors may add to the burden? That’s a kind of irresponsibility that has to change. Specialization has its own areas of blindness. When my husband was being treated for prostate cancer, no one was concerned with anything else. Even when he started suffering chest pains afterwards, and had to decrease his activity, it didn’t occur to anyone that his heart might be failing, as it did a few months later.
The human body isn’t a bunch of boxes which can be treated separately without any concern for how they interact.
LikeLiked by 1 person
I’m so sorry about your husband. They didn’t investigate the chest pains thoroughly? How could they justify that? Cancer gives you chest pains?
Or many worse things I can think that they were thinking. Let’s see how it goes when it’s them – but by then their empathy development is useless.
I wish I could make it happen, the irresponsibility changing.
I’m afraid to complain any more to the doctor, lest I become the ‘difficult’ patient – after which they basically ignore anything you say.
I think I’m going to write the letter to the patient (me) that I wish I would get from them, and explanation, an apology, and a promise to learn from what happened – this would be nice. And since I’ll never get it from them…
It may be healing to ME.
LikeLiked by 1 person
I LOVE your idea of writing the letter to yourself that should come from them. YES! I hope you do it. You are one brilliant, resourceful, and creative lady. Every time you develop a new and surprising-to-me solution, I am amazed all over again by you.
Your self-diagnosis of PTSD sounds right on target. I understand (I think) about the loss of brain causing a loss of confidence. At least, what I have in mind is my most recent presentation to my son’s teachers about his learning disability back at the beginning of the school year. I’m not sure why my own brain went away during the presentation, but it did. And I found it VERY uncomfortable. I forged on anyway, because I had to. But I felt like such an idiot.
The strange thing was that afterward, when I discussed my experience with my husband (who plays the supporting role in these presentations of ours), he said that he thought it was my best presentation to date, He said I was more natural, more relational with my audience of teachers, and he’d liked my presentation.
He wasn’t just saying that to make me feel better. It was his honest assessment.
I share all that merely because I wanted say that even with your loss of brain, you are still doing amazing things, reasoning superbly, generating wonderful solutions.
Of course, I remain angry with all the medical people who SHOULD have done a better job.
LikeLiked by 1 person
I’m more likely to bein that 10% than not, given all the special circumstances.
I would like to pretend I’m more resilient, but I’m not. I’m exhausted, worn down, still trying to adjust to the extra load of cardiac rehab – my one hope for the future – and thinking that I should be BETTER than before, since not much has changed except better blood flow.
There are very few dietary changes I could even make – I’m not losing weight, and I’m eating far less than before, and I wouldn’t change to the ‘cardiac diet’ that lowers fat and cholesterol because I don’t believe it. Research shows elderly women with the highest cholesterol levels live the longest, and statins are bad for them (about the only time I’ve been happy to be classified as an elderly woman).
But the whole cardiac medical profession has its recommendations, and on Thursday it will be stressful to keep saying no to them. I just want to stay away, but I’m too sensible to do that.
I’m sure your delivery to your son’s teachers was completely based on what you had already decided to say, because you would have set that out, and even rehearsed it, so nothing important got left out of the CONTENT; if your delivery was less precise, big deal, as long as you said what you went to say. The important part was your preparation, and I can’t see you shorting that.
Few of us introverts who don’t do presentations regularly are ever going to be completely comfortable, but we CAN be prepared.
The letter idea isn’t original; it is a standard thing to do when confronting the real person or situation isn’t appropriate, safe, or workable for some reason, but the idea gave me comfort.
I WILL write it; I don’t know if I will share that part. This post is already pretty close to the bone.
Maybe that’s partly why I’m so tired: I never allow myself emotions because my system can’t handle getting rid of the adrenaline, the same system that can’t handle getting rid of the drugs. And I haven’t been able to avoid the emotions before, and these last couple of days I’ve been examining them and feeling them deliberately.
ALL of this would have been avoided if I had been able to write. I’ve been spending most of my days at my computer – unable to write fiction. I guess that’s good, as it kept things from getting too buried, but it will be two MONTHS since the stents this Thursday, and two-and-a-half since the beginning, and that’s far too long. Far too long to not be physically and mentally able to get my brain on, while I had all the time in the world to write. Very frustrating.
Such a harrowing story, but thank you for sharing it. Hopefully, the medical profession will begin to recognize PTS as a common side effect.
That’s the thing – it’s ALREADY common. It’s the recognizing they are skipping, and the fact that stress CAUSES second heart attacks, untold misery, and a horrible quality of life.
We need a ‘patient ombusdsperson’ at the doctor’s office.
LikeLiked by 3 people