Her Illness Was Misdiagnosed as Madness. Now Susannah Cahalan Takes On Madness in Medicine.

The problem I have with a lot of psychiatrists is they're just plain hacks. I've had to deal with several in my younger days and back then really believed they had my best interest at heart. Sadly that was never true. I almost never actually got to speak to them, but their underlings and of those I did actually talk with it was like talking to people whose only job was to ensure that people like myself, suffering from depression were locked into wards and pumped full of useless medications. It really wasn't until I realized my depression was just coming and going and if I could just wait it out it would dissipate on its own and I could lead a relatively normal life. The hacks only made things worse and made me distrust anyone actually practicing psychiatry. I really don't need people to practice on me. I need people who actually know what the hell they're doing and in most hospitals and local psych centers all they do is practice screwing up lives. I have almost zero faith in these people.

What about the simple diagnosis that most doctors will give when you have what we call high blood pressure. Even if the person has no real medical problems and is active (runs, pumps iron and walks dogs) they are given pills to lower their blood pressure. But when after awhile such folks find themselves close to fainting, drop things when their hands stop gripping, they have strokes and heart attacks, and wind up going to hospitals where they are told that the pills are not allowing blood to get to their hearts, brains they are still told to take their pills. As a healthy 80-year old I experienced such until I stopped taking my pills and now while I continue to work at overcoming some paralysis in my right leg I have none of the symptoms that I used to have when taking my pills. Doctors need to wake up and stop prescribing pills that make their patients ill.

Beneath the thin surface, our society is a network dog whistle understandings. What appears to be true doesn't seem to make sense because the true social world that produces this surface illusion is only concerned with plausibility to cursory inspection, so cause and effect seem disjointed because the real causes and effects are hidden. I suggest that the reason many of Rosenhan's pretenders were diagnosed as they were is because doctors routinely and knowingly encounter such pretenders who want to be committed, and when they detect this they oblige them by writing up something good that will get them what they're after.

I’m a psychiatrist. I’ve lost count of the number of ER patients resting comfortably and casually reporting “hearing voices telling me to kill myself and others.” How about the new patients who explain they’ve already been diagnosed with ADHD and anxiety demanding whopping doses of Adderall in the morning and Xanax at bedtime? Other new patients recite DSM symptoms of depression or PTSD, but can’t offer actual examples from their lived experience; a week or so after their initial appointment, I’ll receive paperwork asking my support for their disability claim. I’m just a person, not a wizard. I do my best to identify the true diagnosis even when that means not finding one. I don’t hospitalize patients because we have empty beds. I never prescribe benzos for daily use and require neuropsychiatric testing supporting an ADHD diagnosis before starting stimulants. I don’t prescribe antipsychotics for depression just because the TV commercials tell patients I should, especially if the patient hasn’t tried therapy. I don’t accept “mood swings” as sufficient to diagnose bipolar. I’ve come to accept that everything and anything I do offends someone, somehow. I ask too many questions; I don’t ask enough. My prescribing practices are too liberal or too conservative. I’m either too quick or too slow to hospitalize. I’m accused of playing god and being the devil. Still, I don’t seek out patients and none pop in for a yearly check-up so why am I so busy?

Cahalan is more circumspect. “I believe that he exposed something real,” she writes toward the end of her book. “Rosenhan’s paper, as exaggerated, and even dishonest as it was, touched on truth as it danced around it.” There is always a conflict between truth and accuracy. Too often we focus on inaccurate details and reject truth. In many cases patients are given a diagnosis that is the default diagnosis. The physician has used all the information and knowledge available. The state of the art and science of medicine is just not sufficient to diagnose the patient's condition. There is always a default diagnosis that enables the physician to avoid saying, I just don't know. This is particularly, but not exclusively, true in neurology and psychiatry. Beware any diagnosis that is labeled "functional". It is likely just a default diagnosis.

Psychiatry is a scary field because there are no definitive tests to confirm many conditions. Depression and anxiety (diagnosed so often today) may or may not involve chemical imbalances in the brain yet there are no 'before and after' tests to confirm a condition or that a given treatment is effective. Some medications are extremely addictive. Others require careful tapering on and off. Others have side effects like blurred vision. It seems that the use of these drugs SHOULD require close and continued supervision but I am astounded at how little direct oversight occurs when one is taking psychiatric medications (having a sibling who has been in and out of treatment for decades). Benzos are highly addictive and warnings say they are for short use only yet I have seen them prescribed over long terms. One aspect of the many school shootings and armed forces suicides never mentioned is medication history. It seems very plausible that some (many?) of these incidents are linked to psychiatric medications yet this topic seems to be deliberately avoided. Are blood tests for psychiatric meds conducted in cases of suicide or violent acts?

How many of us have had to deal with car mechanics who try to fix a problem that they can't quite diagnose? Maybe the customer doesn't describe the funny sound correctly, that it only happens when the car is in reverse. Garbage in, garbage out. What happens when someone shows up at a psych ward lying about auditory hallycinations? The right information and the right science plus some professional creativity may still not be enough if you don't properly define the problem. All medicine is a bit of art mixed with the science. A patient at an urgent care place presenting with vomiting and diarrhea can be diagnosed with a variety of ailments, sent home with medicine...The symptoms stop, the patient feels better, but we really don't know what caused the problem. Psychiatry is the most mysterious of problems. The stigma of mental illness attacks the field on patient levels. Science here is way behind, yet those with schizophrenia or bipolar disorder can now function far better than was once imagined possible. There is progress with anxiety and depression, PTSD,etc. Medicine is hard. I'm so happy for Ms. Cahalan's recovery and successful, interesting experience writing her books.

After dealing with the mysterious task of identifying people with a "medically determinable impairment" for 40 years I have come to the conclusion that what we call mental illness is really not a definition of anything specific. Mental illness appears to be the state of reporting symptoms which coincide with symptoms outlined in the "Diagnostic and Statistical Manual of Mental Disorders" as published by the American Psychiatric Association. The Social Security Administration has carefully attempted to further define what is a disabling mental illness through its Regulations, which include a Listing of Impairments. Our knowledge of the causes of this illness are minimal, and treatment seems symptomatic, at best.

I remember an Aesop's fable-type story my mother read to me when I was a child. A king sent two of his men out into the kingdom, instructing one to find all the flowers he could, and instructing the other to find all the weeds that he could. Each one returned with a sample of what they found. The first brought beautiful flowers and a glowing report that the kingdom was simply filled with such beauty; when asked if he had seen any weeds, this man answered that he had not. Likewise, the second man brought armloads of weeds of many kinds, along with a dismal report of how the kingdom was in trouble, being so overrun with weeds. When asked if he had seen flowers, his reply was that he had not. The moral of the story, of course, is that we see what we're already looking for; we find what we expect to find. I've seen this play out in many areas of life and in many professions, including that of mental health hospitals, and therein lies my mistrust. Having worked in the medical field for almost 30 years, I have seen the find-what-you-expect principle in play too often when it comes to mental illness, even to the point of an RN who formerly worked on a psychiatric floor calling stroke patients "crazy". That is truly all she saw, regardless of diagnosis. I hope that neither I nor anyone in my family ever find ourselves in their keep.

As a relative of a patient with mental illness and as a physician, I have experienced the problems the elimination of mental health hospitals has produced. The hospitalization time given in institutions nowadays is very often too short to stabilize the patient enough so that a return to normalcy for the patient and the family is achieved. My relative's children had to deal with their very unstable mother while trying to study and live the lives of young people after she was briefly hospitalized and discharged, which happened very often. That this trend was based in flawed science is nothing strange to me. There have several cases in which a study that appears to be a great breakthrough in science turns out to be the creation of a very resourceful mind. Turns out that when patients are affected by that study in a negative way a lot of harm is done.

I have read the Rosenhan paper. His descriptions of how the pseudo-patients are treated fit well with the anti-psychiatry genre of the time--think Ken Kessey's "One Flew over the Cuckoo's Nest." But, basic points remained true. Diagnosis then and now with the latest guide for psychiatrists, the "Diagnostic and Statistical Manual of Mental Disorders," 5th ed (DSM-5), remains highly subjective. Thus, I present to the medical students vignettes that sure look like "schizophrenia", but are NMDA auto-immune encephalitis, low plasma zinc (easy to fix with a multi-vitamin, and intermittent porphyria. My point to the students is that even if the diagnosis slaps them in the face, they should never lock in, but formulate a differential diagnosis with a minimum of three possible causes for some or all of the symptoms. Then do the appropriate tests. Rosenhan's paper is a great read. It is disappointing to read that much of it was slanted or faked. Nevertheless, the resultant self-reflection by psychiatry was much needed and still is needed.

Anyone presenting to medical attention to any reputable hospital with new onset of psychiatric symptoms would never be dismissed as a 'crazy person' as some might think. The opposite is in fact the case, a thorough workup is undertaken while considering a broad differential because there are so many other things that can present as idiopathic psychiatric disorders. Yes, psychiatry does rely heavily on phenomenology but all areas of medicine have gone through this before getting to where they are now. Also consider that the brain is far, far more complex than a simple pump (heart) or filter (kidney). I would further submit that it is often a psychiatrist (a trained medical doctor) who alerts others to the possibility that something else might be going on and in essence prevent them from being dismissed as 'insane'. There was no miracle or marvel here, just the practice of good medicine.

First of all, the reason so many psychiatric institutions were able to close was not due to a "growing antipsychiatry movement" but because of the introduction of new,effective medications for the treatment of the most common disorders resulting in extended hospitalizations: depression, schizophrenia, and bipolar disorder. As to the quote from a psychiatrists that "symptoms and signs are all we fundamentally have" and the lack of blood tests for mental disorders, let me note that as a pain management physician I can tell you the exact same thing can be said about the most common chronic pain conditions. Doctors have to rely upon symptoms and signs to diagnose back pain and the most forms of headaches, the most common chronic pain conditions. Tests that patients believe may have some clinical relevancy such MRIs for back pain actually do in a very small number of cases. And if the author of the book or the reviewer knows of a test to diagnose migraine, tension-type, or cluster headaches, I wish they'd share it with the world; it sure would make life easier for headache specialists. That neither the reviewer nor the author of the book appears to be aware that these limitations are not unique to psychiatry makes one question the extent of their knowledge about medicine.

Rosenhan's study demonstrated that if bright people showed up at a hospital and reported hallucinations and distress they would be admitted. There were no typical indications that they might be faking, such as involvement in a court dispute. They were typically discharged after a few weeks with a diagnosis of no longer hallucinating or distressed. There were very real, serious problems with psychiatry, but I'm not sure detecting mallingering was one of them.

I too was misdiagnosed and frequently threatened by the ideas of the Doctors that I must be mentally ill. I was born with spina bifida and a tethered spinal cord. In 1946, when I was born, the possibility that a spina bifida might bubble into the spinal column instead of bubbling out of the infant's back was unknown. This remained unknown until I was 50 and I was finally diagnosed properly. During those 50 years my parents and then I searched endlessly for the reason for my many baffling problems, which were carelessly explained by Docotrs as evidence of my bad attitude, frailty or mental disease. The deep fisure in my lower back which gave obvious evidence of my spina bifida, along with my posture, which sloped steeply to my left, presented enough evidence of my birth defect. But Doctors enjoyed ascribing these things to some kind of mental problem, instead of hearing me and looking at the situation with an open mind. I have often told my friends, that if you have a medical problem that perfectly fits the established criteria, you will get good medical care in the USA, but if you have the misfortune to have something that is outside of the norms, then GOD help you!

After watching "Brain on Fire" based on Susannah Cahalan's experiences with autoimmune encephalitis, imagining the trauma of a medical team and your friends and family labeling you insane and having no recourse to support your beliefs of your sanity shook me to the core. Considering treatment, I wonder why hasn't the discussion of autoimmune encephalitis considered that diet maybe a factor? There has been a growing community of individual autoimmune sufferers from lupus to multiple sclerosis dissatisfied with traditional medicine treating their symptoms with immunosuppressants. They have taken their health back by changing their diet. There are many diets out there but the one that maybe beneficial to AE sufferers is Autoimmune Paleo Diet. My family has seen their fair share of autoimmune diseases (lupus, sjogrens, thyroiditis). Starting in my late twenties I suffered from thyroiditis, multiple joint pain, psoriasis, IBS symptoms, brain fog and a sensation that my brain felt swollen frequently. I implemented an AIP based nutritional plan for myself last year. It is an elimination diet that introduces foods back slowly and one at a time. My symptoms were alleviated. As always, those who are considering a diet change should consult their primary care providers.

In 1969, it was common for young men my age to seek a psychiatric diagnosis to avoid being drafted. One friend who did it was a clinical psychology graduate student who pulled off an Oscar-worthy performance. It was also reported that dissidents in the Soviet Union were routinely declared insane in order to discredit them and justify locking them up. In that year, I was surprised to learn that the U.S. Air Force had an "underground railroad" for dissident pilots who opposed the war in Vietnam. Pilots willing to accept a bogus psychiatric diagnosis could obtain an honorable discharge, and avoid having to desert and flee to Canada. With coaching from a Quaker at the Central Committee for Conscientious Objection, I took advantage of that program. Years later, the Rosenhan study came in handy, when I used it in a successful effort to reestablish my aviation credentials, as a civilian. It may have been fake, but its publication was timely for me.

A person close to me was misdiagnosed with a serious incurable mental illness from which they would not recover, and recommended to be committed. That did not happen, and the person did recover, from what was probably depression and PTSD.

Such a remarkable personal story. So happy for you that you got an accurate diagnosis! You really are fortunate. I now see psychiatrists as the "drug pushers", doing nothing but chemistry experiments with harmful effects. With few exceptions, they don't mention the side effects or possible drug interactions while they add drug on top of drug; they treat symptoms, knowing nothing about individual variability and rarely pay attention to the whole personal history - and they increasingly go "off-label" as much as on - all while prescribing drugs that alter and ultimately DAMAGE the brain. All done without true informed consent with a patient who is in severe distress - not the time to do the research the doctor's aren't doing to make such critical decisions. They know nothing about true therapeutic interventions for so-called mental health disorders. I continue to wonder if we haven't found the right doctor with a holistic enough mind to identify the real source of my husband's problems through 3 years of trying to help him recover from medical trauma/PTSD. How does one find the doctor who can see past the symptoms? Meanwhile, the best thing that has helped my husband is the program from the book "Wired for Healing: Rewiring the Brain to Recover from Chronic and Mysterious Illnesses" by Annie Hopper.

Wow!

The ambiguity in the field is rampant and I am hopeful that more individuals have similar 'luck' in reaching appropriate treatment as did Ms. Cahalan. Additionally, there is no doubt commercial financial motive in the administration of many of the psychiatric treatment clinics, individual practices, as well as the asylums of the past. The DSM/diagnosis of mental health manual increases annually the number of issues with which one can be diagnosed and thus, reimbursed by our for-profit insurance companies and public entities such as Medicaid and Medicare and the Veteran's hospital system. Another good read could be Thomas Szasz around the myth of madness and its variance among cultures. f you talk to God, you are praying; If God talks to you, you have schizophrenia. --Thomas S. Szasz, The Second Sin

I have MS. Many of us have been diagnosed as mentally ill or just not believed by our physicians and neurologists. One women had become temporarily blind in one eye and was dragging a weak leg when she was given a referral to a psychiatrist--no other tests ordered. One neurologist had me tested for syphilis! "It's all in your head" has become a joke for us. That's right, it IS all in my head--it's a neurological disorder. Turns out my original doctor suspected MS from the beginning but withheld the information to "minimize hysteria since MS is primarily a disease among highly educated females." This isn't just a doctor problem--it's a sexism problem. I'm so disillusioned about not getting help from the medical profession that I'd rather just go to the health food store. Cheaper and better results, and I don't care whether they're psychosomatic results! I'm looking forward to reading these books.

Like everything else in the medical field or in any endeavor for that matter , the outcome generally is correlated with the skill set of the provider.

From the review written here, I find myself more sympathetic than critical regarding the efforts of Dr. Rosenhan to reform psychiatric diagnoses. I suspect that he, like others, had become deeply disturbed by the lack of anything resembling scientific methodology in the psychiatric profession. Even today, as is quoted in this article, "Symptoms and signs are all we fundamentally have." Compare that to the methods used in cardiology to diagnose and treat heart disease. It would make cardiology look like actual science and psychiatry look like a hit or miss pseudo-science, at best. I wonder (and perhaps Ms. Cahalan's new book will reveal): -- since "Brain On Fire" how much in use is the neurological testing which led to a diagnosis of autoimmune encephalitis? Has this become standard in patients exhibiting similar symptoms? -- what is the state of research today regarding discovering biological diseases other than autoimmune encephalitis which could possibly be the actual cause of "mental illness" symptoms? It would seem logical that research would be going in that direction. And if not, why?

When I was first diagnosed with bipolar, I fell into a severe depression that lasted for years, losing most of my “executive functions”. That was over a decade ago. I focused my attention on the study of brain science. That study took me into further studies of mental disorders, psychiatry, psychopharmacology and other interesting, loosely-related articles and studies. I became interested in neuroplasticity and the potential for generating new pathways at any age. I’ve spent years meditating, both with guided imagery and independently-focused. Add to that cognitive behavioral therapy (CBT), diet and exercise. Hmm. All the good stuff that helps everybody, sane or otherwise. This article dovetails nicely into my own conclusions, my hospital stays, how easily, quickly, I was diagnosed by one person and how the diagnosis was never challenged. I’m not suggesting I have a rare autoimmunity but I do believe the “science” of psychiatry needs to examine itself. Not only did my reaction take years away from an otherwise productive life, I was convinced I was mentally ill!

The study's importance is exaggerated, if the standard rules of science are assumed. What about replication by a third party, quality control such as verifying the data (like, duh, the existence of the subjects), and examining the motives and biases of the experimenters? "Medical marvel" or not, this smacks of finding the evidence to fit the author's hypothesis.

Another expose of the very UNscientific quality of much of the work of the soft sciences. These disciplines simply do not understand or teach real science. Peer review is clearly not enough for the social sciences.

Faking a scientific study is immensely damaging, not only for the erroneous conclusion of the study itself, but for the effect it has on the public's perception of scientific studies. The waste of time and money of the scientific community to "overturn" bad science that is published in a prestigious journal is also a real shame. Unfortunately, it is all too easy for a poorly trained scientist to submit for publication their "best" results, ignoring data which doesn't fit their hypothesis. The ethics of experimental design should be taught in science classrooms from high school on, and this story should be shared in those classrooms. It also should be taught to students contemplating careers in journalism and law enforcement, the fundamentally same issue can occur there too.

...I take a bit of issue with the use of the word “marvel.” She was lucky. Period. She came across the right doctor at the right place at the right time to solve her “Brain on Fire”. Let’s be honest about the state of Psychiatry: while everyone might hope for her outcome, nobody should expect to have it regularly for at least another 20 years, or until Watson is so extensively trained and accessible that every diagnostic challenge is fed through it. Medicine-Psychiatry in particular-is among the most imperfect of Medical Arts. Changes in the fundamental business model-as well as the fundamental science of how we study the brain-has resulted in fewer and fewer psychiatrists graduated every year. The tools of medical diagnosis-particularly in psychobiological illnesses-are largely treat first, modify the algorithm when treatments fail, until you get something that works. The successful treatment determines final diagnosis, if you will. Its not like other fields of medicine, where one can clearly see cancer markers in bloodwork or a biopsy, or a blocked artery on an arthrogram. A fMRI or deep EEG does not necessarily show schizophrenia, or bipolar disorder, or a rare protein allergy. I read “Brain on Fire” and found it interesting mostly for terror it conveyed of not knowing why you’re head isn’t working. To think she’s a “marvel” is disingenuous. She was lucky. Frankly it sounds like she hasn’t understood the field she’s trying to investigate.

Women are frequently misdiagnosed because men are the model that medicine uses for most illnesses. Many of the medical models are also out of date but still get taught in med school. Health issues that were traditionally seen in older patients are now manifesting in younger patients. "You are too young" is a common refrain from doctors who encounter patients with such symptoms. Heart disease, thyroid issues, even menopause are appearing in patients in their mid to late 40s or even earlier. If you suffer from depression you symptoms are often swept aside as part of depression. Getting a correct diagnosis takes time and frequently your doctor visits are no more than 5 to 10 minutes. Not enough time to get the details out. If your bloodwork comes back normal it is even harder to be believed that something is wrong. This is just for "common" health issues (heart attack, hypothyroidism, etc) that effect women. Let alone a condition that is very rare. You have to learn to be your own advocate and how to speak to doctors to get them to really listen. Best wishes Ms Cahalan.

A variety of autoimmune disorders can present as neuropsychiatric disorders. A more common example that is easier to recognize than the one in this case is lupus. One thing that is taught as a matter of course in all medical schools is that not all patients that seem crazy are crazy and that crazy people get sick too. I'm sure that this patient with an encephalitis that presents as a clear case of psychosis (without any other signs or symptoms) would be a vexing case even to the best neurologists, never mind to general practitioners.

A "Great Pretender" is, scientifically, nothing more than what is well known to be a "phenocopy" in biology. All diseases (or any macroscopic phenotype) have ultimately a material basis - even the psychiatric ones: genes, proteins, and metabolites - in brief, molecules. Even environmental causes will first have to "translate" into molecular pathways. Now: All these molecular pathways interact, thereby drastically reducing the space of molecular configurations, which represent phenotypes (or diseases) that are allowed. Thus there is a huge collapse of the space of possible macroscopic phenotypes (diseases) from that even bigger space of possible (microscopic) molecular configurations. This means: many distinct molecular anomalies causes can cause very similar diseases. Thee is a convergence of causative molecular pathways towards the diseases. Hence the mimicry.

This is an unfair article and the book is dangerous. The AMA issues exist throughout healthcare. Patients presenting with pain? Chest pain? Physical limitations? All would be misdiagnosed by cardiologists and neurologists. Heart surgeons were literally killing patients with unnecessary CABG for decades. Orthopaedics has littered our nation with folks who are debilitated after spinal fusions and other procedures of dubious benefit for most who receive them. The way this piece singles out psychiatry as uniquely subjective is absurd when studies have shown diagnostic concordance is on par with other specialties. But it does make for good book sales....

Bravo to Ms Callahan for this fantastic piece.

To be a doctor you have to believe the patients are telling you the truth. If they fabricate either purposefully or because of delusions, then the road to diagnosis becomes meandering at best.

Just out of college. First professional job. Mental health counselor at a group home for adult male schizophrenics. Clients, twelve old guys, mostly WWII veterans diagnosed as chronic schizophrenia. One of the guys, Charlie, had been wounded at Iwo Jima, fell into a ditch and left behind. After the war, he was homeless for twenty plus years. He supported himself working as a migrant day laborer up and down the West Coast whenever he could. A relative discovered him living under a bridge and brought him to the VA hospital. Charlie was lost. But, now he'd been found my the healthcare profession. He ends up at the group home. His mind didn't work. He had a heart of gold. Cared for everyone. Shared everything he owned. The VA Hospital gave him the Chronic schizophrenia diagnosis. Charlie died in 1985. Charlie suffered from what we commonly know today as PTSD. He was not crazy, he was suffering.

Whether the concept of mental illness has an actual referent that can be confirmed by science is still unknown. Thomas Szasz’s 1961 book “The Myth of Mental Illness” is still relevant though it has been relegated to oblivion. It argues against the concept of mental illness. His view is that only those dysfunctional behaviors, “symptoms”, based on organic causes should be recognized as illness and categorized as disease. Other behaviors, thought to be caused by mental illness, remain theoretical speculations that have no intrinsic ground in fact based, confirmed agreement. The difficulty is that mind and the related capacity for consciousness remains a mystery. They have not yet been reduced entirely to matter. I speculate, until that happens, if it can, and the brain is integrated with consciousness on a basis other than correlation, attempts to reduce the totality of reality to matter, natural and human, agreement about the concept of mental illness will not occur. An approach that focuses on behavior itself, normal or disordered, the “sane” or “insane”, may lead to further clarity about how to accurately describe our human condition.