Saving Normal : An Insider's Revolt Against Out-of-control Psychiatric Diagnosis, Dsm-5, Big Pharma, and the Medicalization of Ordinary Life (9780062229274)

by Frances, Allen

  Patient’s rights regulations demand that inaccurate diagnoses be corrected, but the hospital has so far refused to admit the diagnostic mistake despite letters from other psychiatrists stating firmly that Susan is not bipolar. At least one cloud has lifted: “When my psychiatrist first told me that I am the best mom for my kids, I was speechless. I do have imperfections but feel thankful and proud to be the mother of my two little miracles. And I will keep fighting to get my records corrected.”

  There are many lessons here. Fads cause careless diagnosis. Clinicians should buck fads, not join them. Wrong diagnoses can do enduring harm that comes with no automatic expiration date. It is almost always better to underdiagnose than to overdiagnose. And doctors should never take at face value advice given to them by drug company sales representatives.

  Liz’s Story: The Fad Overdiagnosis of Childhood Bipolar Disorder and ADHD

  Liz is twenty-three years old, a generally happy person now embarked on a life of public service, extensive travel, and loving relationships. “I have my ups and downs, like anybody else, but I don’t think that makes me particularly crazy. Being able to say that and really believe it has been a long time coming.”

  Liz was a difficult child—hyperactive and prone to tantrums and power struggles. Neuropsychological testing at age five revealed high IQ—but the discrepancy between the verbal and performance scores was taken as evidence of attention deficit disorder and learning disability. Ritalin improved her handwriting but caused troubling side effects—a coughlike tic, compulsions, and depression.

  “At age six, I would sometimes go in to the kitchen and hold a butcher’s knife to my throat, not really thinking about actually killing myself but more just contemplating what would happen if I did. When I admitted this to my mother, she took me to Dr. Y, an expert on childhood behavioral and bipolar disorder at a famous medical school.”

  After a very brief visit, Dr. Y prescribed Zoloft. “What followed was a vicious cycle saga I still find infuriating and bizarre—it’s unbelievable that a top psychiatrist put a young child through such traumatic and unnecessary experiences. The Ritalin meant to counteract ADHD caused depression, so they prescribed Zoloft, which made the ADHD worse. Instead of taking me off Zoloft or trying something else, my dose of Ritalin was increased, which caused worse depression, and so my dose of Zoloft was also raised.”

  This mindless chasing of side effects with ever-increasing doses of medication caused Liz’s behavior to become increasingly erratic, uncontrollable, and wild. “I jumped out of the car as my mother pulled out of the driveway. I broke a glass and attempted to walk on the pieces. This was not me—I had never demonstrated such admittedly insane behaviors, neither before nor since. But I was just seven years old, and the high doses of two powerful drugs were just too much for me to handle.”

  On Dr. Y’s advice, Liz was pulled from school and sent to a nightmarish day program. They responded to her drug-fueled defiant behaviors punitively, which made her more defiant. “My most vivid memories are of being dragged kicking and screaming into a small white locked room with padded walls. If I hadn’t felt crazy before, that certainly did the trick.”

  After a few days, Liz’s parents wisely rescued her from the program, stopped her medications, and returned her to school. Her behavior improved, but fights with parents over homework and discipline persisted and got worse as she began puberty. Dr. Y was again consulted—his national reputation overcoming doubts about the negative effects of his earlier interventions. The new diagnosis was childhood bipolar disorder, a concoction widely popularized by Dr. Y and his colleagues at the famous medical school. Liz’s parents were told that antipsychotic drugs could help, and she was prescribed not just one, but two in combination. Her parents fortunately could not bring themselves to give her the drugs, and Liz refused to take any more medication.

  “Although I continued to fight with my parents and teachers fairly regularly, I had my fair share of friends and got good grades. By the time I reached high school, I was a moody, angsty teenager, not unlike most high school students. I pushed myself to take honors classes and subsequently struggled with the unmanageable workload. My academic difficulties and the pressure I put on myself caused me to grow quite unhappy. After much debating, my mother convinced me to see Dr. Y once again.”

  This was another unfortunate triumph of misplaced faith over unhappy experience. Within minutes, Dr. Y was enthusiastically recommending two new medications. “I had been through too much trouble with medications and refused to take any more. After graduating from high school and leaving my parents’ house, I have never since struggled in the ways I did before. My problems as a child would not have been so problematic if they didn’t need things to be so structured and rigid—just the wrong fit for me. I don’t doubt I have ADD but can live with it. The mental scars left by the doctors who tried to cure my growing pains with medication may never fully go away. They made me feel less than normal when I was young and still developing. Ironically, it is my very obstinacy, which they were trying to cure, that has allowed me to move past those experiences to lead a full and ‘normal’ life, whatever that means.”

  Brooks’s Story: The Fad Overdiagnosis of Schizoaffective Disorder

  In eleventh grade, Brooks had a six-month spell of sadness. After a few minutes of conversation with his family doctor, he was diagnosed as having “clinical depression” and medication was begun. “The impact of the label hit me like a ton of bricks. I developed a strong self-hatred for what felt like my puny, defective brain.”

  Eight months and numerous failed antidepressant trials later, Brooks experienced the added burden of a manic episode, probably triggered at least in part by the medication. “I felt I was here for a very special reason and I was going to do BIG things. When I was diagnosed with schizoaffective disorder, it was something I truly couldn’t wrap my head around. The line between reality and fiction became quite blurry.”

  His hospital records state that Brooks had experienced delusional beliefs about decoding a message to save the planet and that he planned to write a book about healing to share with hospitals in the city. The delusional thoughts faded over the following year and doctors finally settled on the more accurate and much less stigmatizing diagnosis of bipolar disorder. But the psychological impact of the changing labels and constantly altered treatments was excruciating. “I believed I was wrong, period, and everyone else was right.”

  For several years, Brooks continued to feel severe dread, paralyzing anxiety, emotional pain, and a sense of being disconnected from friends and family. He worried that the numerous medications had permanently rearranged his brain chemicals, putting him on a crash course that could only get worse and worse. His dilemma forced a decision to either commit suicide or commit to fighting the battle wholeheartedly.

  “There was an undying spark in the middle of my soul that said no. I was my own man and should decide for myself what’s normal and what isn’t. I refused to live without meaning.” Brooks began an in-depth study of cognitive behavior therapy and created his own customized techniques for analyzing his emotional and cognitive states. He grouped these into what he calls “The Lens.” “I knew there was something incredibly wrong in the metaphorical glass that was shaping my perspectives, beliefs, and emotional states, and I set out to correct the glass so I could see through it clearly and recover.”

  It worked. Using “The Lens” and other methods for the past twelve years, Brooks was able to define the life he wanted and feel well enough to go after it. He became a filmmaker, began to speak publicly about his experiences, and included many metaphors of his journey through psychosis in the first feature, Kenneyville. Brooks was also serious about that book he intended to write. Now entitled The Lens, it is nearing completion. “Of course there are life’s ups and downs, but I’ve broken out of the intense fear, paranoia, sadness, and anxiety I once felt. I’m appreciative of everything in my life, including this journey. It has made me much stronger with a
greater sense of connection to myself and others.”

  Bob and Sarah: Confusing Grief with Depression

  Sarah’s thirty-three-year-old son Bob committed suicide by taking a combination of antidepressants and sleep medications. The pills had been casually prescribed and carelessly monitored over a period of eight months by a doctor who saw Bob only a few times for a total of about thirty minutes and never once asked what was going on in his life. Bob had become disconsolate as he struggled through a painful and protracted divorce and difficult custody battle. He badly needed counseling help to deal with the emotional stresses and his practical problems, but this was never offered. All Bob got were increasing doses of unhelpful pills used in changing combinations—and these eventually became the vehicle he used to end his life.

  Sarah had watched Bob’s suffering evolve and had a premonition that things might end disastrously, but her many efforts to help were of no avail. She was understandably devastated: “I was numb, in a dream state, crying all the time, unable to sleep, eat, focus, work. I never realized how great my life was until I had no life. My family couldn’t help—my father is a strong Catholic and withdrew from me; my sister started drinking again.”

  Two weeks passed with Sarah in deep, shocked mourning. Her friends suggested she go to the doctor, saying this would help her pain go away and get her going again. After a brief interview, he explained that she was clinically depressed and wrote a prescription for Lexapro, with a follow-up visit to occur thirty days later. “I told the doctor my son had taken Lexapro and had used them to kill himself and that I had anxiety about going on any medications because I saw how badly he had reacted to them. The doctor was clinical, brushing aside my fears and my loss. I needed someone who would understand and share the pain I was going through, not put a cold medical label on it.”

  Sarah took the pills for two weeks and got much worse. She became agitated and felt like killing herself to gain relief and to join Bob. The doctor incorrectly told her this couldn’t possibly be a side effect of the medicine. “He said my suicidal feelings were all psychological and would go away if I continued the pills for at least thirty days. I stopped taking them immediately. This ended the suicidal thoughts, but not the suffering or longing for my son.”

  Sarah had to figure out on her own what she needed to do to go on living. “I began counseling, became active in grief groups, drew solace from devotion to my faith and church, practiced yoga, and threw myself into physical activity, into my work, and giving to others in my community. My son had a son, and I believe that Jason’s love and needing me helped to save my life. I continue to live with my grief every day and always will, but at least I feel like living, and after two years, I can experience joy and laughter again.”

  Myra’s Story: Prescription Medications Make Things Worse

  Myra, a documentary filmmaker, was invited to an artists’ workshop retreat where she met Jane, a writer. As they began talking about Jane’s OCD, Myra worried she might have the same problem. “I was in talk therapy for depression with an experienced psychotherapist and had never taken any medication. But as Jane described her OCD, my ears perked up. That’s me too! As a four-year-old, I had this habit of rocking myself to music to get to sleep, and it broadened into what seemed like a compulsion whenever I had a paper due, a new boyfriend, or some daunting task. And my thinking all the time about that dumb boyfriend seemed like an obsession. No doubt, I was OCD.”

  Myra sought consultation with Jane’s psychiatrist, who fancied himself something of an OCD specialist and (mis)labeled many of his patients with it. Soon the diagnoses, the medications, and the side effects all started piling up in a mindless jumble. Dr. Z confidently confirmed Myra had OCD and also added that she might have traits of borderline personality disorder. He prescribed an antidepressant that helped her feel less depressed, but also made her jumpy, irritable, and hyperactive. To deal with this side effect, Dr. Z prescribed an antipsychotic that calmed her down but also knocked her out, made her drool, caused her to see double, and left her feeling like a zombie.

  “I would tell my psychiatrist about all the side effects and he would always make a change. Ritalin to wake me up. Seroquel to put me asleep. Dial the Geodon down, maybe, or even increase it, telling me that ironically sometimes by increasing meds you circumvent their side effects. Maybe we should add on Abilify or Risperdal? Usually adding, rarely subtracting. All of these medications, and all of this strange reasoning, for the next few years. With my brain addled and spinning during that period, it was hard to keep track.” As things got worse, Dr. Z decided that Myra had bipolar II and added on even more medication.

  Myra’s psychotherapist was skeptical. She saw no evidence of OCD or BPD or bipolar disorder. She was concerned that Dr. Z never asked for her insight into Myra’s symptoms and background or returned her calls requesting his rationale for diagnoses that made no sense and medications that caused so many side effects and were making things much worse. “I knew I had to choose between my therapist and my psychiatrist. I felt like the child of divorcing parents—caught in the middle between two different theories of what was wrong with me. With the Celexa withdrawal and deepening depression, I felt like I had to grab at some kind of rope. I was in a dark tailspin, suicidal, unable to sleep at night, to stay up during the day. I couldn’t stop thinking about all of the mistakes I had made in my life, all the opportunities to make different decisions, rerunning over and over again images of the past and bad memories in an endless film loop. I had no choice but to go with the psychiatrist.”

  Not a wise choice, but an understandable one. Myra was desperate for relief and Dr. Z always had a new suggestion—something to calm her down, something else to jump-start her. A constant chasing of side effects with medicines that caused even more side effects. Thankfully, the story has a happy ending. Myra went to a different psychiatrist who gradually withdrew her from the many medicines she was taking. She remains on only low doses of Lamictal and Wellbutrin, without side effects.

  “I have no idea if they work at all but feel too scared to try life without them. Thankfully, with much less medicine, I’ve never hit a suicidal space again—just some brief depressions related to idle time from the usual pockets of unemployment that come with working in film and TV. I will never let anyone put me back on a crazy cocktail of drugs, and no one since Dr. Z has agreed with the ‘OCD,’ ‘bipolar,’ or ‘borderline’ diagnoses. Today I rely on exercise, friends, meditation, nutrition, and vitamins and would like to return to psychotherapy if I had more means and a steady schedule. I worry about professionals who call everything a disorder and prescribe unnecessary medications.”

  Through it all, Myra clung to work as a life raft, soldiered through the side effects, and has had great professional success. A grant allowed her to do a documentary selected for Sundance. She is now a sought-after filmmaker able to get regular work in a very competitive industry. And a much wiser consumer of psychiatric diagnoses and treatments.

  Maria’s Story: Missing the Drug Abuse

  Maria had a challenging childhood with tempestuous parents. “My father was a driven man from humble beginnings with a short temper and little patience for ‘emotional women.’ Unfortunately, my mother was a very emotional and fragile woman with chronic depression.” Both parents were frequently absent—her father on business, her mother with periodic breakdowns. His difficult character and her instability made for an impossible marriage. When Maria was eight, they divorced and fought a bitter custody battle that her father settled abruptly by taking Maria to live in another country. She didn’t see her mother again for twenty years. A psychologist evaluating Maria for a custody hearing described her as well adjusted and loving despite all the troubles. Her father hired a series of nannies “who would end up pretty much raising me.”

  As a teenager, Maria experimented with drugs: first marijuana, then LSD and amphetamines. Her behavior became more erratic, and her performance at school deteriorated. “The drugs gave me the
sense of belonging and respite from my tense home situation.” After high school, she moved out, got a full-time job, and enrolled in community college.

  “When I was twenty, I started having trouble sleeping and felt overwhelmed. I saw a general practitioner who diagnosed depression after a fifteen-minute visit. The diagnosis reaffirmed that there was something ‘wrong’ with me deep inside, but having a name for it reassured me it wasn’t my fault.” The doctor prescribed as carelessly as she diagnosed—no follow-up visits, just get in touch for refills. “The first day I took half a Paxil, it felt like methamphetamine. During class I could not stop my legs from shaking and had the almost uncontrollable urge to get up and run as fast as I could. I would wake with a start in the middle of the night, covered in sweat and fearing for my life. Seeking a ‘calming’ drug to counteract my agitation, I tried heroin for the first time—a plentiful drug in my circle of artists and musicians. My casual use escalated into a daily habit, and I was also abusing prescription medications whenever I could get my hands on them: Xanax, Klonopin, Valium, Vicodin, and Dilaudid.”

  Maria saw a psychologist who administered a series of tests to establish a diagnosis. “He said I was suffering from ‘chronic depression’ and ‘generalized anxiety disorder.’ Again, this validated me immensely. It was not my fault I was so screwed up! I did not question how my drug use or even the unresolved (and very real) issues in my life could have affected the results of my tests.” She was referred to a psychopharmacologist. “Our visits lasted roughly ten minutes. He kept giving me more meds. As a drug user, I was ecstatic that now I had a prescription for a drug I had been taking recreationally. But things in my life got worse.”