What do we pay doctors to do?

Use medical instruments to collect data? Record that data in our charts? Perform procedures? Prescribe medications? Give referrals to other medical specialists? Recommend home care remedies and strategies?

Have I forgotten anything?

The author of a new memoir would say YES!

Kurt Eichenwald has written an astounding memoir, published last year, about his lifelong struggles with epilepsy . . . and people. He tells a story that made me cringe and kept me riveted. I was especially intrigued because his story has so many similarities to my own.

I do not suffer from epilepsy. I have not suffered from drug side effects to the extent that Eichenwald has. But I have suffered from debilitating medical issues. I have also suffered from drug side effects. And I have suffered, like Eichenwald, from the missteps, overconfidence, and occasional outright hostility of other people, while I was trying to attain the medical care I needed.

Perhaps one day I will write my story. But I’m not sure I have much to express that Eichenwald hasn’t already brilliantly covered in A Mind Unraveled.

Experiencing a health problem is scary. Full of fears and anxieties, we turn to doctors for their expertise; and we believe what they tell us. We want to believe; we feel that we have no choice but to believe. But Eichenwald tells a horrific story of doctor after doctor failing him. He was misdiagnosed, multiple times. He was treated with condescension and disrespect, multiple times. He was prescribed medications that almost killed him, multiple times. He was wrongly informed that his seizures were not epilepsy, but a psychological disorder, multiple times.

Finally, after years of worsening epileptic seizures, and years of taking seriously high doses of medication without proper physician monitoring; after years of not knowing where he would wake up next, or with what debilitating injuries; after years of enduring discrimination for having a disability, and personal trauma and that almost resulted in him giving up on life entirely—he finally stumbled upon a doctor who was willing and able to help him. Here’s what happened during Eichenwald’s first consultation with Dr. Naarden:

“After twenty minutes, Naarden had already spent more time speaking with me than any other neurologist ever had.”

What?! No other neurologist had spent more than a total of twenty minutes talking with their patient about a serious, debilitating medical problem?

During that first visit, Dr. Naarden went on to speak with Eichenwald for much longer than twenty minutes. And he continued talking with his patient. He talked with him not just during the initial consultation, but during future visits. And this communication went both ways. The doctor listened very carefully to Eichenwald’s story and asked follow-up questions. He also told Eichenwald, in detail, what he knew about Eichenwald’s current medical situation, what he didn’t know about it, and what he would like to do in an attempt to learn more.

This communication was essential to a correct diagnosis of Eichenwald’s disorder. It was also essential to the series of careful, logical steps the doctor had to take to get Eichenwald’s epilepsy under better control, as well as to prevent high levels of drugs from further damaging the patient’s health. Finally, it was essential in instilling a sense of trust in Eichenwald, who by then had understandably given up on trusting any doctor, and was hesitant to do anything one advised him to do.

When a doctor talks with a patient about a medical issue, this is not wasted time. This is an integral part of the data-gathering process. Anecdotal information from the patient is equally as valuable as measurements obtained from diagnostic tests. When a doctor does not gather information from a patient, key pieces of the puzzle go missing. The doctor is then forced to jump to conclusions.

I was shocked that no other doctor had spent time talking with Eichenwald . . . but I was not surprised. The same thing happened to me. After encountering a series of doctors who misdiagnosed me and gave me wrong treatments and advice, which significantly worsened my problems, I finally stumbled upon one who was willing and able to help me.

How long had each of the unsuccessful doctors spent speaking with me about my health issues, total?

Yep, less than twenty minutes.

How long did the successful doctor spend speaking with me—during my initial consultation alone!—about my health issues?

Yep, more than twenty minutes.

So, what do we pay doctors to do?

One of the great things about the book The Body Keeps the Score, by Bessel van der Kolk, M.D., is that it is written for laypeople and practitioners alike. No matter whether you’re the one lying on the couch, so to speak, or the one with the credentials, the book contains massive amounts of research-based insights.

One point that Dr. van der Kolk makes over and over is that not every strategy works for every patient. The key, whether you are the person in search of healing or the therapist, is to find the strategies that work, and move forward with those. That sounds like wisdom to me! That being said, the doctor explains that an overriding principle applies when people seek to recover from trauma:

“Trauma robs you of the feeling that you are in charge of yourself, of what I will call self-leadership in the chapters to come. The challenge of recovery is to reestablish ownership of your body and your mind—of your self.”

This passage occurs on the first page of the last section of the book, “Paths to Recovery,” which takes up nearly half its pages. In this section, Dr. van der Kolk offers information on a variety of ways that people can move toward self-leadership. These strategies are as diverse as the people they help. Some require a group of people, some require one-on-one sessions, and some require the seeker of relief to be alone. Some require help from a trained professional (in psychology, yoga, theater, choir, or another area), and some require merely a willingness on the part of the seeker of relief to try something new.

Dr. van der Kolk further refines what it means to develop self-leadership. Here is his explanation of what self-leadership entails, no matter which strategies one uses:

“For most people this involves (1) finding a way to become calm and focused, (2) learning to maintain that calm in response to images, thoughts, sounds, or physical sensations that remind you of the past, (3) finding a way to be fully alive in the present and engaged with the people around you, (4) not having to keep secrets from yourself, including secrets about the ways that you have managed to survive.”

All four of these involve taking control over one’s life. Learning to be and remain calm is the same thing as learning to control one’s response to emotions. Learning to stay in the present (and not the past) is the same thing as learning to control one’s experiences. Engaging with other people is the same thing as taking control over one’s ability to receive something essential to all people: human companionship and love. And being honest with oneself is an essential first step in taking control over one’s life—as opposed to letting one’s fears control it.

In writing this post, I suddenly remembered a short story I read in college, “The Yellow Wallpaper” by Charlotte Perkins Gilman. At the time, I did not understand why my professor thought the story was so great. I reread it just now, and wow—do I understand now. (Oh, the things I wish I had picked up on at a younger age!)

“The Yellow Wallpaper” is about a woman experiencing “nervous depression.” Her husband and her brother, both physicians, insist that the cure is for her to do as little as possible. She must not do anything she loves, such as writing or visiting with loved ones! No, she must stay isolated at home, mainly in bed, until she recovers. The poor narrator trusts these authoritative men more than she trusts her own intuition. Things do not, needless to say, end well.

If you are hoping to recover from trauma, the last thing you need is for someone to further restrict your agency. And note that Dr. van der Kolk mentions both writing and loving human contact as strategies for developing self-leadership. But also note: the answer is not to stop listening to the advice of loved ones and professionals. Rather, it is to listen to them with a grain of salt. If your gut tells you a recommendation is a bad idea . . . it probably is. Even if the person giving you the recommendation is a doctor, your husband, or both.

Who’s in charge of your life?

Today I’d like to share with you an example of the importance of getting the words right. The language we use is immensely consequential in not just how we think about real-world issues, but also how we handle those issues as a society: how much money is allocated, what kind of care people receive, and other important effects.

Bessel van der Kolk, M.D., exposes the faulty language we use surrounding trauma, and then he makes a fascinating argument for a change in the language—with a corresponding change in people’s decisions and actions.

(Note that this blog post is a brief synopsis of and commentary on a long and complicated expostulation. I encourage you to read The Body Keeps the Score to understand and appreciate Dr. van der Kolk’s full evidence and argument.)

Dr. van der Kolk argues that, over the past century or so, there has been a cover-up surrounding the scientifically demonstrated fact that abused children experience detrimental psychological effects. Moreover, he explains, these detrimental psychological effects are not random; there is what he calls a “consistent profile,” which he describes in detail. Not all abused children exhibit the same symptoms (just as, for example, people can experience different symptoms despite being infected by the same virus). However, such children have commonalities such as trouble regulating emotions, trouble concentrating, trouble getting along with others, sleep disturbances, unexplained pain, and doing things like rocking and cutting to relieve tension.

But, Dr. van der Kolk laments, there is no established diagnosis for this consistent profile. Instead, children are being given multiple diagnoses that describe symptoms, not the underlying cause. For instance, many children are being labeled as having “oppositional defiant disorder” or “disruptive mood dysregulation disorder.” As a result, children who desperately need care that addresses trauma are instead receiving care that addresses bad behavior. Such care, since it does not focus on the core problem, does not come close to resolving the core problem.

How did we get ourselves into this predicament of language? Why has there been a cover-up surrounding childhood trauma? Dr. van der Kolk takes us back to the time of Sigmund Freud:

“In 1896 Freud boldly claimed that ‘the ultimate cause of hysteria is always the seduction of the child by an adult.’ Then, faced with his own evidence of an epidemic of abuse in the best families of Vienna—one, he noted, that would implicate his own father—he quickly began to retreat. Psychoanalysis shifted to an emphasis on unconscious wishes and fantasies, though Freud occasionally kept acknowledging the reality of sexual abuse.”

It’s a hard topic. It’s not a great issue to talk about, politically speaking. What would you rather give a public speech on, child abuse or unconscious wishes?

But Dr. van der Kolk gives the reader hope with his historical analysis of another kind of trauma, today known as post-traumatic stress disorder, or PTSD. When governments came to realize that fighting in WWI caused “shell shock,” they worked to hide this fact. Publicizing shell shock would cost money (soldiers experiencing it would need treatment and disability pay) and destabilize the war effort (governments wanted to encourage men to enlist, not emphasize war’s dangers). So WWI veterans were not treated for shell shock. Neither were WWII veterans. The politics during the Vietnam War era, however, were different; and a new diagnosis, PTSD, entered the books and the lexicon. Along with this new language to describe a medical condition came new awareness, treatments, and funding.

There was another huge benefit of the language change. As it turned out, veterans were not the only ones who had this medical condition:

“The adoption of the PTSD diagnosis by the DSM III in 1980 led to extensive scientific studies and to the development of effective treatments, which turned out to be relevant not only to combat veterans but also to victims of a range of traumatic events, including rape, assault, and motor vehicle accidents.”

Dr. van der Kolk argues that we are overdue for a language change in the realm of child abuse. He proposes the term Developmental Trauma Disorder. I am not a doctor and cannot comment on his suggestion with authority. However, I can comment with authority that I have read over and over about falsehoods told for political purposes. I don’t know about you, but I am tired of the fake news. If there is a problem and a solution, let’s name the problem in plain language and implement the solution. Covering up the problem and addressing symptoms never works over the long term. The doctor says it best:

“You would not want to have your appendix removed when you are suffering from a kidney stone, and you would not want to have somebody labeled as ‘oppositional’ when, in fact, his behavior is rooted in an attempt to protect himself against real danger.”

Do you fight for truth in language . . . despite the risk that someone will label you as “oppositional”?

Have you ever lived in a home with a fire alarm that was too sensitive?

It creates quite the scene! You’re innocently boiling water on the stovetop, when the merest thread of smoke happens to emanate from the burner. You don’t notice it. You can’t see it. You can’t smell it. Your husband across the room can’t smell it. Not even your dog can smell it.

And then—BLEEEET!!!! Ouch, your ears hurt! and you can’t think and you and your husband are crashing into each other as you lunge for the same towel and the dog is barking and howling and you try to fan the alarm, but it’s too high up and you realize you need to grab a chair and stand on it and meanwhile your ears, ouch! and you finally get the chair in place and stand on it and fan the darn thing, and it stops blaring. Whew! You decide to take out the battery, because this happened three times this week, and you put the chair away. But then you think, “What if there’s a real fire?” So you put the chair back and put the battery back in, and the darn thing starts blaring again because the water is now boiling over the sides of the pot and creating another minuscule emission of smoke so you fan it off again. You shut off the burner, and meanwhile it fails to occur to either you or your husband to notify the landlord, partly because the landlord is annoying to deal with, but mostly because you’re in your 20s . . . which is an excellent excuse for all kinds of mistakes!

I read the most amazing and scholarly and mind-blowing book recently. In it, the author compares a certain structure within the brain—the amygdala—to a smoke detector. This alarm system warns the body of danger and triggers a quick response. Trauma, according to the author, can cause the body’s smoke detector to become too sensitive. This creates an internal state as chaotic as the scene described above.

The Body Keeps the Score, by Bessel van der Kolk, M.D., is one of the best books I have read in the past year. It’s long, but every page is a gem.

The book means a lot to me personally. Trauma can arise in different ways; fighting in a war and being raised by a psychopath are only two of many possible causes. I feel confident in saying that I have experienced trauma. I also feel confident in saying that navigating the U.S. health care system to find the help I needed was a disheartening—and traumatic—experience in itself. That’s why passages from the book like this one mean so much to me:

“Psychologists usually try to help people use insight and understanding to manage their behavior. However, neuroscience research shows that very few psychological problems are the result of defects in understanding; most originate in pressures from deeper regions in the brain that drive our perception and attention. When the alarm bell of the emotional brain keeps signaling that you are in danger, no amount of insight will silence it.”

I tried so hard to heal myself through rational thinking! And others tried so hard to heal me by encouraging me to think rationally! But this failed. Using the logical, conscious part of the brain to try to heal trauma is like waving a towel at an overly sensitive fire alarm. Sure, it works . . . but only if you attend to it continuously and avoid doing anything else in life, for fear the alarm starts blaring again.

When I was in the thick of my struggles, each of these helped me significantly more than talk therapy:

• Yoga
• Neurofeedback and learning to meditate
• Unconditional support from loved ones and professionals, especially those who were empathetic listeners and who urged me to contact them anytime
• Joining a choir
• Attending spiritual services, as well as personal spirituality and prayer
• Medication

Most of these aren’t considered mainstream medical services in the U.S. Thus, most are not covered by health insurance. But as I read The Body Keeps the Score, I was astonished to see every one of these strategies pop up as effective and recommended treatments for trauma. Dr. van der Kolk devotes an entire chapter to yoga, for example, and another to rhythms and theater (which includes a discussion of singing and ceremony). As it turns out, the strategies I gravitated toward in my search for healing, some of which are classified as “alternative medicine”—a term often used pejoratively—are supported by research conducted by leading medical specialists. And yet the U.S. health care system has a long way to go in incorporating this research into practice.

Note that none of the strategies on the list involve rational thought. In metaphorical terms, none of them affect one’s ability to wave a towel. Instead, the strategies work by accessing and repairing (or, in the case of medication, artificially rigging) the smoke alarm itself.

How do you access the unconscious areas of your brain?

“You should be ashamed!”

It’s common to hear outraged people say or type these words. The underlying postulate of the expression is as follows: someone who has wronged someone else should feel bad about him- or herself, and this bad self-feeling will spur them into acting more altruistically next time.

According to Brené Brown, research shows that this postulate is false. Feeling ashamed does not help a person become more altruistic. It’s quite possible, she explains, that guilty feelings will lead to positive behavioral changes—but shame is of no use in that regard. In her recent book Dare to Lead, Brown very simply explains the difference between guilt and shame:

In other words, feeling guilt is making a negative judgment about certain actions you have taken in the past, while feeling shame is making a negative judgment about yourself as a person. The difference is huge. In the first instance, you have the freedom to make better choices in the future, because the judgment is strictly about the past. In the second instance, you are not likely to start behaving differently, since you believe you are permanently, irredeemably bad.

Things get even more interesting when Brown shares the outcomes that research has found to be associated with each of these emotions:

“While shame is highly correlated with addiction, violence, aggression, depression, eating disorders, and bullying, guilt is negatively correlated with these outcomes.”

So in order for someone’s behavior to change—whether that’s someone else or yourself—the answer is to feel guilt (if applicable), never shame. I have been testing this on myself since I first read about it in Brown’s 2012 book Daring Greatly. Previous to that time, I had been walking around the planet feeling shameful for being alive. Literally! It’s astonishing what can happen when, anytime you notice yourself feeling ashamed, you ask yourself whether you should actually be feeling guilt—or whether you’re just beating down on yourself unnecessarily. Either way, I find that it’s helpful to bat away that wretched shameful feeling, give yourself a pat on the back for trying (even if you just failed!), and think about what you might do better next time.

In this passage, Brown takes things a step further and points out that people in power who seem shameless are likely actually shameful—and that therein lies the problem:

“In our political chaos, people throw around the word shameless when they see someone make a self-serving or unethical decision, . . . attributing unconscionable behavior to a lack of shame. This is wrong and dangerous. Shame isn’t the cure, it’s the cause. Don’t let what looks like a bloated ego and narcissism fool you into thinking there’s a lack of shame. Shame and fear are almost always driving that unethical behavior.”

Let’s watch out for the use of the word shame, both on the Internet and in the streets. And let’s watch out for the feeling of shame in our hearts. These things are not needed here on earth. Sometimes we make mistakes. But we are not bad people. We’re just trying to find our way.

Conjure up the feeling of guilt: what does it feel like? Conjure up the feeling of shame: what does it feel like? Can you inwardly sense the difference?