I am continually astounded by how many people I meet with horror stories that have not been diagnosed with PTSD. The American Psychiatric Association states that about 3.5% of Americans have PTSD. Still, I believe that number to be much, much higher. My views come from my unique position as a trauma specialist who has had the opportunity to interview thousands of people, and from my own experiences with PTSD. I have PTSD, but I was misdiagnosed by every doctor and therapist I had seen for 30 years. I didn’t even put it together until 10 years after I got my doctorate. But it was such a relief to finally realize what was going on for me! Are you one of the undiagnosed?
The are many reasons PTSD is so rarely diagnosed. For one thing, PTSD is a difficult concept to quantify in clear, logical terms and the consensus diagnostic criteria that we have all seen are not an explanation. This ambiguity opens the door to all kinds of incorrect assumptions. Further, therapists and doctors are influenced by the medical insurance and pharmaceutical industries. As a result, they are often taught not to diagnose PTSD. Finally, patients also have their own objections to the diagnosis. In this blog, I will offer a much better definition of PTSD and propose a new way of thinking about trauma.
Try looking up “What is PTSD?” What you will see is not clear, nor is it a definition. It’s just a list of symptoms. Just about every website, article, or book regarding PTSD is based on information from the fifth version of the Diagnostic and Statistical Manual of Mental Disorders or DSM-V for short.
The book is necessary because people, including clinicians, need to classify mental disorders to understand and communicate them. I admit that PTSD, like many other disorders, is challenging to measure and quantify because it is not a function of the logical side of our brain. Instead, it’s a phenomenon of the unconscious brain, just like meditation, mindfulness, or dreaming, which scientists also struggle to explain.
While there need to be clear-cut criteria for diagnosis, the DSM-V overly complicates things and ultimately misses the point. There are eight criteria, most of which contain multiple sub-criteria. I once met a guy who suffered from numerous massive traumas, yet to my surprise, he was not diagnosed with PTSD by his doctor. Because he met only one out of two criteria from section E of the DSM-V, he did not qualify for a PTSD diagnosis in the eyes of this book. So his doctor told him that he did not, in fact, have PTSD. Simple as that! As a consolation prize, he was awarded a prescription for anxiety medications that came along with tremendous downsides.
You don’t have to go to war or almost die to contract PTSD. Unfortunately, the lack of a clear definition has led professionals and laypeople alike to be preoccupied with actual life-threatening events. In other writing, I argue that the limbic system responsible for the fight or flight response can easily be triggered by stimuli that are not existential threats. Furthermore, simply being exposed to certain conditions such as military service or a job as a first responder requires elevated levels of adrenaline and other stress hormones and can evoke an adaptive response that ends up being similar to PTSD. In fact, just growing up in a dangerous area or with mild neglect or abuse can lead to this. PTSD is a healthy response to an unhealthy situation.
Too many clinicians see traumatized kids and miss the boat. In his book The Body Keeps the Score, Bessel van der Kolk discusses his fight to get the American Psychiatric Association to create a Developmental Trauma Disorder diagnosis. It’s caused by growing up in unhealthy conditions and not developing the ability to regulate one’s emotions. He hints that it was never adopted because the American Medical Association is in bed with the pharmaceutical industry. Children who get a poor start in life are prescribed an excessive amount of pharmaceuticals. They are fantastic customers who never get better.
We humans need to classify everything in our world as much as possible. It’s how our brains work to allow us to navigate through our environments. Classifying mental disorders is reductionist. There is nothing inherently wrong with reducing things to smaller parts to understand them. Still, it can lead to people being pigeonholed. Mental health clinicians tend to assume that all pathology must fall within the criteria for specific mental health diagnoses listed in the DSM-V. Round people and their experiences, personalities, and circumstances are routinely put into square holes. If you think about it, we all simplify things way too much to soothe the anxiety of not knowing something. I remember being in graduate school, wanting so badly to learn everything I could to become a great psychologist. I found myself desperate for rules and certainty, but psychology naturally defies that because people are so unique and complicated.
Making hard and fast rules and assertions like this is reductionistic and, therefore, not holistic. Western medicine breaks everything down in its attempts to isolate the disease. Practitioners treat individual symptoms independently of each other. I have heard many times how they should not neglect to treat the whole person. I believe that therapists should also be more holistic. Family therapy is rare these days and is forgone in favor of individual Talk therapy. Often people are treated without regard for their social contexts, even though research has always underscored their importance. Not surprisingly, there is minimal mention of social contexts in the DSM-V.
I believe that doctors are mostly good people who want to fix their patients’ problems. The tools they possess are tests that help them isolate specific problems, rule out others, and medications. It must feel great to be able to prescribe a drug that cures someone’s ailments. But when one has a hammer in one’s hand, everything can start to look like nails. Confirmation Bias is when people naturally overlook conflicting information to try to prove something to themselves. I believe that medical professionals over-diagnose anxiety and depression because there are so many medications for those problems. They can tell themselves that’s what’s going on and that they have an answer. Another reason that PTSD is underdiagnosed is that there are no meds for it! Therefore, it is ignored. PTSD is listed under the umbrella of anxiety disorders, but anxiety is only one symptom of PTSD. PTSD should be in its own defined category. Like anxiety, depression is often a byproduct of PTSD but is not directly related to it. These are the two most common misdiagnoses that people with PTSD experience.
Another common misdiagnosis is Bipolar disorder; this is because many people who have PTSD have trouble sleeping. Doctors hear this and gravitate towards a Bipolar diagnosis.
I contend that insomnia results from too much adrenaline, which aligns well with a PTSD diagnosis. Still, the unfortunate fact is, medical professionals often need to cram their patients into a small square hole, and that’s why that is so over-diagnosed.
I recall my professors instructing me to not diagnose PTSD. Most therapists stay away from doing so because they are taught that a heavy diagnosis could follow people and prevent them from getting health insurance or employment. I have never personally or professionally heard of anyone having any such difficulty, but the notion remains. There is also a belief among clinicians that assigning a label for something severe can be detrimental. That amazes me because while they have an aversion to diagnosing PTSD, therapists are taught to zero in on everything that has ever gone wrong in someone’s life! Talk therapy is insight-oriented. Therapists help their patients craft a narrative of their life. Explanations for people’s pathology are agreed upon whether they are true or not. Insight can assist people in dealing with some disorders but lacks value in the face of PTSD. How many times have you seen your therapist lean back, satisfied with their illustration of how you came to be messed up? As if that’s really going to change anything! I have often felt that my personal therapy sessions amounted to painful mining for gold that I can’t spend.
I did not have the best start in life in terms of my mental health. And then, when I was 14, my mother suffered a stroke that left her handicapped for life. Soon after that, my father died from cancer. I lost my childhood and my whole life as I knew it. My mother grew bitter and quite abusive. How on earth would that not be profoundly traumatic? Why was I never diagnosed with PTSD? I suffered multiple traumas that ruined my life for decades. Yet, every therapist or doctor I saw failed to even mention PTSD. Because that’s only for soldiers? Even after I earned my doctorate, I have to admit that I still didn’t have a better understanding of PTSD than anyone else. It wasn’t until I focused my practice on trauma sufferers that I saw how much I have in common with them. I diagnosed myself.
Even patients sometimes have objections to being diagnosed with PTSD. Like everyone, they retain the convenient extreme archetype of PTSD, broken down by combat veterans. So when someone thinks they may have PTSD, they do not want to be seen as taking anything away from the sacrifices made by our veterans. They also feel guilty or embarrassed telling others of their diagnosis. Patients fear that they will be challenged or ridiculed.
Interestingly, no one has ever told me that they had spoken to a veteran trying to have a monopoly on PTSD. In fact, people often see me after they’ve talked to a vet, who recognizes their own symptoms in them. Finally, some people do not like to be labeled as broken. Dealing with the mental health system tends to define people by their past, and that disempowers them
I wish society had a convenient, easy-to-understand definition of PTSD. Mine has been developed and honed over many years and thousands of interviews with traumatized people. I believe that PTSD is simply an overactivity of the fight or flight system. Its sufferers have to deal with extra adrenaline in nearly every moment of their lives. That explains why so many suffer from insomnia and anxiety and how difficult it is to feel comfortable in one’s own skin. When I tell people that, they often resonate with this definition and wonder why it had not been put to them so simply before.
I have been deeply affected by trauma. And personally, I don’t care if I meet the official diagnostic criteria for PTSD or not. My brain has changed, and I wish there were a colloquial term to identify that. I’m told that in some Spanish-speaking cultures, people can just say that they had suffered “un trauma.” Then others understand it without challenging it or analyzing it, or breaking it down into meaningless parts. So I’m looking for a new name for this condition that has nothing to do with psychiatric diagnosis to administer medication or medical insurance reimbursement. Something like “Activated,” or “Wired,” or a name that connotes the maladaptive changes that have occurred.
PTSD is grossly under-identified by the mental health establishment. There is no clear, convenient definition available to the public or even to professionals. This opens the door for nearly everyone to simplify their understanding of it, to only include its worst and most sensational sufferers- combat veterans. In their attempts to understand PTSD, Social Scientists have failed to present us with clear concepts. Instead, they have been unduly influenced by the health insurance and pharmaceutical industries – inevitably resulting in rampant misdiagnosis.
If you are living with PTSD, you deserve to know what is wrong with you and how it can be fixed. The current diagnostic criteria for trauma-based disorders focus on the symptoms of clinical depression or anxiety but exclude those who have experienced a traumatic event outside of this diagnosis. This has led many people to believe that they are crazy when their brain is just wired differently from others’ due to its exposure to trauma. I am calling for a paradigm shift regarding understanding and talking about trauma unrelated to clinical diagnostic criteria so that everyone knows what is going on inside them and can seek appropriate treatment accordingly.
If you think your life may be affected by posttraumatic stress disorder!