Regaining power over our own health - power that has been taken from us by uncaring bureaucracies and arrogant authorities - was the goal of Ivan Illich's 1976 book Medical Nemesis, which detailed an epidemic of physician-caused death and illness. Unfortunately, this epidemic continues, and so does an epidemic of physician-caused anger, anxiety and despair.
Today, it is not news that US medicine is killing us in huge numbers. Even the American Hospital Association now admits to 98,000 deaths per year caused by hospital mistakes, and recent research shows this total is far higher. In 2013, the Journal of Patient Safety reported that, at the lower limit, 210,000 deaths per year are associated with preventable harm in hospitals, and that the "true number of premature deaths associated with preventable harm to patients is estimated at more than 400,000 per year." That makes it the third-leading cause of death in the United States (behind heart disease and cancer). And this total doesn't include outpatient treatment errors, which research shows include a similar amount of malpractice.
Among the lengthy list of preventable medical errors resulting in death, it is especially drug use errors, communication failures and diagnostic errors that result in another medical nemesis: They can make us appear - and sometimes feel - like we're "crazy" - out of touch with reality.
When it comes to medical interactions, there is no bigger source of resentment, anger, helplessness, depression and behaviors that are deemed "crazy" than the experience of not being taken seriously.
Investigative journalist Robert Whitaker, in his 2011 book Anatomy of an Epidemic, has brought attention to the research showing that psychiatric drugs, for many patients, can result in mild and episodic emotional problems becoming severe, chronic and disabling ones. For example, an adverse effect of antidepressant and ADHD stimulant drugs is mania, which can result in a bipolar, psychotic diagnosis.
While I've seen several examples of these psychiatric drug adverse effects that Whitaker reports, what I've heard even more from patients in my three decades of clinical experience is that many of their doctors' routine communications, diagnoses and standard treatments can be invalidating and infuriating.
An American Journal of Medicine study (February 2015) about the effects of doctor communications on a small sample of pain patients reported that a lack of understanding and acceptance can create anger and distress. Invalidated patients reported feeling dismissed and disbelieved, resulting in hopelessness and anger. In an interview with the study's lead author Maddy Greville-Harris, she stated, "Our earlier work too, suggests that receiving non-understanding feedback can have very powerful effects."
A generation ago, the idea that invalidating, incongruent, catch-22 and double bind communications from authorities - be they military commanders, doctors or parents - could be "crazy making" was mainstream discourse among my fellow psychologists. However, Big Pharma drug sales benefit from a strictly biochemical view of mental illness, and a major agenda of the National Alliance on Mental Illness (NAMI) is to abolish "parent/authority blaming" with regard to mental illness; drug companies have funded NAMI, which has successfully made it politically incorrect to discuss communication by authorities as one potential cause of disturbing behaviors.
How Diagnosis Can Render Us "Crazy"
My experience is that, when it comes to medical interactions, there is no bigger source of resentment, anger, helplessness, depression and behaviors that are deemed "crazy" than the experience of not being taken seriously. Such invalidation can be caused by doctors' misdiagnoses in two major ways.
One way is that when physicians can't figure out an organic cause for a patient's physical suffering, many of these doctors become frustrated and even angry with patients - and label them with psychiatric diagnoses. This is the subject of Chloe Atkins' 2010 book My Imaginary Illness.
Doctors often diagnose a person with a psychiatric disorder when that person's so-called symptoms are actually normal human reactions.
When Atkins was 21 years old, she developed serious motor skill problems and at times couldn't walk. Doctors could not figure out what was physically wrong with her, and so they declared that it was "all in her head," and she was given psychiatric diagnoses such as conversion hysteria. For the next 20 years, her physical symptoms were not taken seriously. Finally, Atkins found a physician who did take her physical symptoms seriously and diagnosed her with a form of myasthenia gravis for which she was successfully treated.
But Atkins remains afraid that, given the psychiatric labels that remain in her medical records, she is still vulnerable to once again being stigmatized as a "head case." Such fear makes Atkins appear mentally ill to those authorities who equate a fear of doctors with paranoia.
Atkins is not alone. I recently consulted with a woman who, after years of misdiagnosis, figured out on her own that her physical and psychological symptoms were caused by pernicious anemia, a physical condition that can be treated with B12 injections, a simple and relatively inexpensive treatment that continues to be successful for her. But her medical records include diagnoses such as "somatic pain" and "somatoform" (which means that symptoms cannot be traced to any physical cause), as well as other psychiatric diagnoses. These psychiatric diagnoses create a great deal of anxiety and anger for her because for any physical problem she may have, many doctors will not attempt to get to the root physiological cause; instead, based on the psychiatric diagnoses in her medical records (that she has so far been unable to have expunged), her physical complaints are dismissed as psychiatric issues. Her fear and anger seem quite reasonable to other people in her situation, but for doctors and even for some of her family members, she appears paranoid.
Beyond the misdiagnosis of physical illnesses as psychiatric ones, doctors often diagnose a person with a psychiatric disorder when that person's so-called symptoms are actually normal human reactions.
When our inattention, depression, anxiety and distrust are quite normal reactions but are instead deemed mental illness, this can be enraging.
So, suppose the love of your life suddenly dies and you find yourself having difficulty concentrating and making decisions, having difficulty sleeping, lacking any appetite or interest in once pleasurable activities, lacking any energy and pretty much immobilized. And suppose you happen to have your annual physical exam three weeks after this death, and you report how you are doing to your doctor. Does your doctor simply assure you that you are experiencing a very normal grief reaction? If your doctor follows the American Psychiatric Association's latest diagnostic manual, the DSM-5, your symptoms indicate that you have the mental illness of depression, and that doctor will likely prescribe antidepressant medication. While there are some patients who want medical treatment for their emotional suffering, others who reject this path run the risk of being labeled in their medical records as treatment noncompliant.
"Diseasing" normal reactions is especially common with children and adolescents who are rebelling against oppressive environments; doctors simply label them with mental illnesses. When our inattention, depression, anxiety and distrust are quite normal reactions but are instead deemed mental illness, this can be enraging - and then that rage, too, is determined to be a "crazy" reaction.
The Case of Ernest Hemingway
In the last years of his life, Ernest Hemingway became extremely depressed and ultimately committed suicide in 1961. The origins of his depression are uncertain - one of many possible causes may have been ongoing severe pain from the physical damage caused by multiple injuries. What is certain is that not only did doctors not help his depression, but, by Hemingway's own words, doctors made him more hopeless.
"Well, what is the sense of ruining my head and erasing my memory, which is my capital, and putting me out of business?"
Hemingway's doctors leaped to diagnostic conclusions of paranoia about what we now have evidence were Hemingway's very valid fears. And these diagnostic conclusions resulted in his depression being viewed as psychotic depression, which led to multiple electroconvulsive treatments (ECT) that resulted in Hemingway feeling even more depressed, hopeless and suicidal.
By 1960, Hemingway was depressed and sounded deeply paranoid to those around him. His friend and biographer A.E. Hotchner recounts how Hemingway and another friend (Duke) met Hotchner's train in Shoshone, Idaho, for the drive to Ketchum, Idaho. When they did not stop at the bar opposite the station as they usually did because Hemingway was anxious to get on the road, Hotchner asked Hemingway, why the hurry? Hemingway replied, "The feds ... It's the worst hell. The goddamnedest hell. They've bugged everything. That's why we're using Duke's car. Mine's bugged. Everything's bugged. Can't use the phone. Mail intercepted."
But was Hemingway actually experiencing delusions? Later, Hotchner discovered the FBI had in fact placed Hemingway under surveillance, and Hotchner believes that it is likely that Hemingway's phone was tapped. Hotchner wrote:
Decades later, in response to a Freedom of Information petition, the FBI released its Hemingway file. It revealed that beginning in the 1940s J. Edgar Hoover had placed Ernest under surveillance because he was suspicious of Ernest's activities in Cuba. Over the following years, agents filed reports on him and tapped his phones. The surveillance continued all through his confinement at St. Mary's Hospital. It is likely that the phone outside his room was tapped after all. In the years since, I have tried to reconcile Ernest's fear of the FBI, which I regretfully misjudged, with the reality of the FBI file. I now believe he truly sensed the surveillance, and that it substantially contributed to his anguish and his suicide.
Hotchner feels guilty for misjudging Hemingway's fears, but it was psychiatrists' arrogant certainty that Hemingway was paranoid and thus psychotically depressed that resulted in treatments that, by Hemingway's own words, made him more hopeless and suicidal. According to another Hemingway biographer, Jeffrey Meyers, Hemingway was treated with ECT as many as 15 times in December 1960, then in January 1961, he was "released in ruins." Hotchner reports in Papa Hemingway that Hemingway's loss of memory caused by the ECT made him even more depressed and hopeless, as Hemingway stated, "Well, what is the sense of ruining my head and erasing my memory, which is my capital, and putting me out of business?" In July 1961, soon after Hemingway had been given still another series of shock treatments, shortly before his 62nd birthday, he committed suicide.
Can the Medical Nemesis Be Abolished?
What can halt this epidemic of physician-caused death, illness, anger and despair?
Medical Nemesis author Ivan Illich clearly acknowledged there are valuable aspects of modern medicine, but he knew that much of it is deeply problematic. And while Illich greatly admired dissident, whistleblowing physicians, he knew that there are not enough of them in places of power to transform health care, and so he warned, "What is dangerous is a passive public that has come to rely on superficial medical house cleanings."
Illich instead hoped, "The crisis in medicine could allow the layman effectively to reclaim his own control over medical perception, classification, and decision-making." Recognizing the enormity of uncaring bureaucracies, greed-driven institutions and arrogant doctors, Illich believed that change will not come from inside the medical establishment, and so he instead urged the public themselves to regain power: "My argument is that the layman and not the physician has the potential perspective and effective power to stop the current iatrogenic epidemic."
While many Americans have been touched by this epidemic of physician-caused anger, despair and death, my sense is that much of the public feels helpless to change it. Thus, the job of dissident health-care professionals is to: (1) validate the public's perception of this medical nemesis, (2) encourage patients, when it makes sense, to challenge authorities and (3) to energize the public by describing how in fact they do have power. Patients can demand to be taken seriously, and all of us - patients and dissident professionals together - can help one another to be taken seriously.