My experience in the mental health system is that most of those working in it—especially those who’ve devoted their lives to helping those in need—are to be thanked and admired. Not everyone shares this view. We’re asking so much of them: Here, solve my mental and emotional pain, even though we really don’t know how to do that on a grand scale. There are bad apples—in every profession.
But we’re failing people with mental illnesses. We fail them when we 1) don’t give them the care they need and 2) tell them that their diagnoses are chronic (they’re not), purely biological (definitely not), and the best they can do is manage their symptoms (not even close).
We fail them when we don’t center mental health treatment around recovery.
The 2000s could have been the decade of recovery. It included the President’s New Freedom Commission Report on Mental Health (2003), the National Consensus Statement on Mental Health Recovery (2006), and SAMHSA’s Recovery to Practice Initiative (2009). The 1990s, which had been hailed as the “decade of the brain,” had produced lots of misinformation: the mistaken ideas that psychiatric diagnoses are biological, valid, caused by a “chemical imbalance,” and lifelong. The government, it seemed, was finally going to move away from the biomedical model and adopt the recovery model.
The President’s New Freedom Commission sought to transform mental health care. It had six goals:
Americans understand that mental health is pivotal to health.
Consumers and their families become the center of mental health care.
Disparities in mental health services no longer exist.
All Americans have access to screening, assessment, and referrals.
People receive services and research increases.
Technology is used to full advantage.
But the commission did so much more.
It gave those with lived experience of mental illness a voice. Dr. Dan Fisher, who recovered from schizophrenia, was on the Commission. The Commission sought out feedback from consumers, as we were referred to in the report. We were experts too.
In February 2006, SAMHSA officially endorsed the recovery model. The press release announced, “Recovery must be the common, recognized outcome of the services we support.” It called for the mental health system to “move towards operationalizing recovery from a public policy and public financing standpoint.” It outlined ten core components to recovery: self-direction, person-centered care, empowerment, holistic care, non-linearity, strengths-based treatments, peer support, respect, responsibility, and hope.
Almost as a reminder, as if to say, Hey, it’s been a decade since we made recovery the most important part of our mental health care system, and yet it still isn’t, SAMHSA adopted its Recovery to Practice Initiative in 2009. It sought to provide training and resources on recovery to clinicians. Headed by Larry Davidson of Yale’s Program for Recovery and Community Health, it didn’t take root though not for lack of trying.
The 2010s could have been the decade of recovery, too. Psychiatry was besieged by controversy. The insidious relationship between psychiatrists and pharmaceutical companies reached the public. Publication of the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM) brought protests not primarily from patients and consumers and their families but powerful biopsychiatrists, two of whom essentially wrote the DSM.
In 2011, Marcia Angell helped bring the nefarious relationship between psychiatry and pharma to the public. The former editor of the esteemed New England Journal of Medicine published a two-part review/outcry. She highlighted the scathing criticisms of psychiatry put forth in three books: Irving Kirsch’s The Emperor's New Drugs: Exploding the Antidepressant Myth, Robert Whitaker’s Anatomy of an Epidemic: Magic Bullets, Psychiatric Drugs, and the Astonishing Rise of Mental Illness in America, and Daniel Carlat’s Unhinged: The Trouble with Psychiatry—A Doctor's Revelations About a Profession in Crisis. Others had tried to blow the whistle, but Angell’s critique appeared in a lay albeit literary media outlet. The three books might otherwise have been viewed as fringe, anti-psychiatry diatribes, but Angell, because of her status in the medical community, legitimized their findings and critiques.
Though Angell’s aim was to make people aware of the dangers in the ways psychiatry was being practiced and its reliance on psychotropic medications, her review brought to light the many ways the biomedical model was failing the American public, primarily because of the influence of pharmaceutical companies. They paid academic psychiatrists, referred to by drug companies as “key opinion leaders” (KOLs). Angell writes: “[T]hese are the people who through their writing and teaching influence how mental illness will be diagnosed and treated. They also publish much of the clinical research on drugs.” One-fifth of the American Psychiatric Association’s funding came from pharma, which also subsidized psychiatric meetings, conferences, and research studies. These biopsychiatrists in pharma’s pocket, Angell writes, “largely determine the content of the DSM. In a sense, they are the best sales force the industry could have, and are worth every cent spent on them.”
In 2013, the most recent full edition of the DSM sparked a veritable uproar. Criticisms ranged from the authors’ ties to Big Pharma to the way the DSM pathologized normal thoughts, behaviors, and emotions and invented new diagnoses to how criteria were loosened to make disorders easier to diagnose to the fact that political wrangling, not science, dictates the diagnoses we receive.
The DSM-5 professed to be more “scientific” than the previous editions. It rebranded with the Arabic 5 instead of the Roman numeral V to signal a “new” approach that distinguished it from previous editions and said to the public, yes, this time, these diagnoses are scientific (for sure) even though they weren’t. Everyday behaviors like childhood temper tantrums (disruptive mood regulation disorder), mood changes before menstruation (premenstrual dysphoric disorder), and overeating (binge eating disorder, which states that anyone who has “binged” and felt bad about it once a week for the past three months has a mental illness) became mental illnesses.
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In mainstream media outlets like The New York Times, powerful biopsychiatrists, including former DSM Task Force Chairs Robert Spitzer and Allen Frances, filleted the DSM-5. They tried to inform the public that the DSM doesn’t define what a mental disorder is. It doesn’t provide a measure to gauge if a person’s symptoms are severe enough to qualify as being labeled “disordered.” Its authors can’t show at what point normal thoughts, feelings, and behaviors cross over into abnormal. Frances writes: “There is no definition of a mental disorder. It’s bullshit. I mean, you just can’t define it.”
In his 2013 book Saving Normal: An insider’s revolt against out-of-control psychiatric diagnosis, DSM-5, Big Pharma, and the medicalization of ordinary life, Allen offered a kind of mea culpa for the mistakes made in previous editions of the DSM. He acknowledged the DSM-IV’s role in creating the false epidemics of bipolar II, autism, and ADHD. The DSM-IV could have prevented those “epidemics” by requiring more symptoms of longer duration with greater impairment. In 2019, he explained, “[T[he diagnostic exuberance of DSM-5 confuses mental disorder with the everyday sadness, anxiety, grief, disappointments, and stress responses that are an inescapable part of the human condition.”
Scholars documented the prejudice in the DSM—how, historically, diagnoses have served to try to help some people and control, alienate, and persecute others—setting off a practice of viewing the psychiatric diagnoses not through a lens of biology but social injustice. In his 2011 book The Protest Psychosis: How Schizophrenia Became a Black Disease, the psychiatrist Jonathan Metzel meticulously outlines how schizophrenia, one of the most stigmatizing diagnoses, has been used as social control over Black men. Andrew Scull would later document the many brutal and unproven experimental therapies—lobotomies, forced comas, and the removal of internal organs (really)—inflicted primarily on women. Add to this the long history of “mad women” being exorcised, raped, and burned to death. Scholars would continue to explore the contradictory and damaging reasoning that allowed the American Psychiatric Association to pathologize homosexuality as a mental illness until 1973.
Some of the most prominent biopsychiatrists admitted that DSM diagnoses are abstractions. Thomas Insel remarked, “[W]e actually believe [diagnoses] are real. But there’s no reality. These are just constructs. There’s no reality to schizophrenia or depression . . . [W]e might have to stop using terms like depression and schizophrenia, because they are getting in our way, confusing things.” The psychiatrist and Columbia University professor Michael First has said people “take diagnosis too seriously . . . It is a convenient language for communication, and nothing more.” Others have referred to DSM diagnoses as placeholders. Steven Hyman, another former NIMH director, called DSM diagnoses “fictive [categories].” Allen Frances has said that a psychiatric diagnosis is a fiction sold to the public as fact.
With biopsychiatry’s failures on display, the time was right to finally (finally) move to the recovery model called for a decade earlier. In 2018, SAMHSA pledged recovery services and support to those with mental illnesses. Finally.
Yet mental health clinicians, the American Psychiatric Association, and the World Health Organization still haven’t adopted the recovery model. They continue to press upon us the biomedical model that says all we can do is cope, not hope.
When it comes to adopting the recovery model, the 2020s feel like they’re already slipping away. They aren’t, of course, but they’re the decade to finally fulfill a promise psychiatry actually has the ability to keep.
We know the biomedical model doesn’t work. Biopsychiatrists spent billions trying to show the supposed biogenic origins of mental illness. In doing so, psychiatry failed to care for patients by establishing better (some would say humane) treatments and systems based on rehabilitation and (yes) recovery. As Thomas Insel put it in his book Healing: Our Path from Mental Illness to Mental Health,
“I spent 13 years at NIMH really pushing on the neuroscience and genetics of mental disorders, and when I look back on that I realize that while I think I succeeded at getting lots of really cool papers published by cool scientists at fairly large costs—I think $20 billion—I don’t think we moved the needle in reducing suicide, reducing hospitalizations, improving recovery for the tens of millions of people who have mental illness.”
This has led some to fault Insel, but I admire him for talking about this publicly and trying to rectify the situation in his current work in biotech. How many professionals—particularly doctors, researchers, and other clinicians—admit when they’re wrong?
Recovery has slowly made its way into academia: John Strauss and Larry Davidson at Yale (Davidson ran the Program for Recovery and Community Health for twenty-five years); William Anthony at Boston University; and John Gilmore at the University of North Carolina School of Medicine. Although the Yale program and others help secure some funding and lend recovery research an air of prestige, that funding is a fraction of what’s poured into yet more studies trying to prove the biological origins of DSM diagnoses.
Pharma still has its tentacles in psychiatry. Even if we were to purge all academic psychiatrists and patient advocacy groups of their conflicts of interest, pharma influences clinicians, those in the most direct contact with patients.
But we are moving in the right direction. In 2021, SAMHSA opened its Office of Recovery to enforce its commitment to giving every American the chance to heal from mental illness and psychiatric conditions. It named September National Mental Health Recovery Month to declare publicly that there is hope.
The biomedical/maintenance model alone isn’t working. As the New York Times reported in 2021, rates of mental distress and suicide have risen: “[T]he science did little to improve the lives of the millions of people living with persistent mental distress. Almost every measure of our collective mental health — rates of suicide, anxiety, depression, addiction deaths, psychiatric prescription use — went the wrong direction, even as access to services expanded greatly.” We are, by many counts, in the midst of a mental health crisis.
So why aren’t we publicizing recovery to the public, patients, and their families? Why isn’t recovery mentioned in more research studies and during every clinical appointment in which mental health is discussed and in at least some media coverage?
Part of the problem is that there are many definitions of recovery, and medicine prefers single answers. Officially, there are two types of mental health recovery: clinical and personal. Clinical recovery is rooted in the biomedical and maintenance model. It’s aimed at the reduction of symptoms. It says we’re basically all the same. Symptoms in one person are the same as symptoms in another. It’s determined by a physician. The expert defines the course of treatment and, often without telling the patient, decides if and when the patient has healed.
In personal recovery, we determine if we’ve healed. We set the standard. We create lives that signal our recovery—whatever that looks like.
Currently, research on recovery is term-dependent and narrow in focus. Recovery rates depend on whether clinical recovery (the complete absence of symptoms, many of which are part of the human experience, like depression) or personal recovery (hard-to-quantify properties like hope, optimism, empowerment, confidence, work satisfaction, finding meaning in life, having a safe living environment, and feeling part of one’s community) is the benchmark. Much of the research on recovery focuses on serious mental illness, particularly psychosis/schizophrenia, because those suffering are most in need, often have little access to services, and are typically thought of as “hopeless” cases whose conditions will continue to degenerate and bring early death.
More and more clinicians—those who believe recovery from mental illness is possible—now consider personal recovery a clinical outcome. We can recover and play an equal role in determining our treatment. Only then will we save lives and give people the futures they deserve.
The best way to support my work is to purchase a copy of my national bestselling memoir Pathological, hailed by The New York Times as “a fiery manifesto of a memoir.” Pathological traces how we’ve come to believe that ordinary emotions are mental disorders and the twenty-five years I spent in the mental health system believing that psychiatric diagnoses are valid and reliable, which they’re not.
If you’ve already purchased a copy, thank you! You can gift a copy to a friend, your local library, or your favorite used bookstore.
Ms. Fay, many of your criticisms of our mental system are valid. There is over-diagnosis, sometimes enabled by DSM 5 criteria that can be interpreted broadly, or mis-interpreted. But there are two long-standing strengths that could be tapped to bring us to a Recovery Mental Health system. Because the first has been neglected since the 1980s, the second is not as effective as it could be. In the early 1970s I was one of many who implemented the radical Community Mental Health System. We were helping patients live in the community, connect with family and other resources; we provided community residences, community-based crisis intervention services, including suicide prevention. Part of my role was to partner with police to provide crisis intervention that could prevent criminalization, prevent re-hospiatlization, or ensure short term stabilization with planful return to the community support network via the Screeening-Linking-Planning Conference method. We were demonstrating success, but by the late 1980s, we were losing the funding to sustain our community-based system. The public did not understand mental health, or how critical our budget was. And voters supported political candidates who did not care about mental health like the Kennedy's had. So gradually our new, efficacious system degraded. That was right about the time our second strength came along: Evidence Based Practices. As we were losing funding, our scientist-practitioners were finding cognitive-emotional-behavioral treatment methods that worked when matched to the right diagnoses. And though you may not want to hear this, there were also new medicines that were more effective with fewer side effects. We knew what we were doing, but there was no political will amongst voters or amongst politicians to follow-through. So today you're free to criticize, and you think you've got a new way, "Recoverey Mental Health". I really wish we had you with us back in 1973.
Thank you for this important history and perspective.
I particularly resonated with your point that personal recovery is harder to measure than clinical recovery – but just as important, if not more.