Education and Advocacy for Mental Illness: Why Bother?
People agree that mental illness is real. On the other hand, people act as if mental illness is not real. If public opinion has steadily shifted toward a recognition of psychiatric illness, public behavior has not. Less than half of people with diagnosable mental illness get treatment in any given year (
Substance Abuse and Mental Health Services Administration 2018), and this number has changed little in nearly two decades (
Wang et al. 2005). Of those who do get treatment, only about half adhere to it (
Sajatovic et al. 2010). Thus, the vast majority of people with mental illness do not accept treatment for it, and do not fully accept the medical necessity of such treatment.
This radical inconsistency of thought and action should not surprise any mental health professional. The contradiction between belief and behavior lay at the root of Freud’s insights about the unconscious, and continued in the “split brain” experiments of Gazzaniga and Sperry that heralded the beginning of modern neuropsychology. It is part of the daily fare of mental health practitioners. Put simply, it is possible to know one thing and do another. Our brain systems for conscious understanding seem to operate along different pathways from those for feeling and motivation. When these contradictions become unbearable, we seek mental health treatment or other forms of growth and healing. Even so, self-contradictory behaviors are a fixture of human nature and can become embarrassingly obvious in both individual and community life. To say one thing and do another is simply a part of the human condition.
Although I cannot prove it, I see the opposite contradiction in the current culture of mental health professionals. On the one hand, we seem to act every bit as if mental illness is real medical illness. Everywhere I look, I see colleagues going about their business in a straightforward, rational, scientifically grounded manner. I see all sorts of health professionals, from primary care physicians to social workers, treating mental health conditions as medical illnesses with medical treatments. Every day, I see psychotherapists recommending medications and pharmacotherapists recommending talk therapy. Although our field is fraught with challenges, I do not generally see massive overdiagnosis, overmedication, or overreliance on just one form of treatment. Nor do I see any crisis of confidence that prevents us from diagnosing and treating mental illnesses in a vigorous manner. Instead, I see a steadily maturing field of mostly well-trained, thoughtful clinicians who go about their business according to appropriate professional and scientific standards.
On the other hand, while mental health professionals act as if mental illness is treatable and real, we regularly speak as if it is not. Of course, in an implicit sense, almost all clinicians “know” that mental illness is real and treatable. It is in our bones and in our guts, a reality that is usually too obvious for words. Most of us do not spend time debating the nature of mental illness any more than surgeons spend time debating the reality or definition of medical illness. We sense clearly enough that it is real and that we need to get on with treating it.
Even so, when we begin to talk explicitly about mental illness, our professional culture begins to sound radically uncertain. We rarely articulate the confidence we enact in clinical practice. For instance, it is commonplace to assert that we cannot generally define mental illness. Some academic experts have even asserted that we should give up trying (
Phillips et al. 2012). It is just as common to assert that we do not know the neurobiology of our most important mental illnesses. We do not know the central pathophysiology of major depression, or the neurobiological cause of schizophrenia, or why some people get PTSD and others do not. So (it is said) we cannot even define what we are treating, philosophically or medically. In similar fashion, debates about the reality of various mental illnesses regularly resurface, even among medical professionals (
Pies 2015).
The New England Journal of Medicine, for instance, occasionally features articles debating whether addiction is a mental illness or simply a learned behavior (
Lewis 2018;
Volkow et al. 2016). Meanwhile, the British Psychological Society’s report on schizophrenia allowed that psychotic symptoms could amount to social deviance or simple eccentricities (
Cooke 2014;
Frances 2013). And, of course, there is the long-running debate over the nature and legitimacy of DSM, along with regular criticisms that psychiatry is vastly overdiagnosing and overmedicating our population (see
Chapter 4).
Such literary conversations stimulate those within our field but confuse those outside it. We should not be surprised, therefore, that skepticism about psychiatry is considered sophisticated among educated Americans. Publications such as
The Atlantic,
The New York Times, and
The New Yorker contain periodic features with titles like “Mental Illness Is All in Your Brain—or Is It?” (
Szalai 2019) and “Psychiatry’s Incurable Hubris” (
Greenberg 2019). Historians continue to document the failures of psychiatry, characterizing it as frequently misguided, overconfident, and reductionistic (
Harrington 2019). And there are a host of popular books that question the entire mental health enterprise, from DSM to clinical diagnosis to treatment (see
Chapter 4).
Full-scale attacks on psychiatry are commonplace from both within and without, yet strangely enough, few mental health professionals think of defending it so vigorously. We rarely see anyone explaining the entire edifice of mental health diagnosis and treatment, much less defending it. I suspect this is because mental health clinicians and researchers sense that the scientific debate ended years ago. Scientific research has obviated the traditional critiques of our field, which are mostly irrelevant to both practice and research. Most of the questions that do remain relevant (such as areas of overdiagnosis or overmedication) are peripheral and not central to our craft. That is, they are questions of degree (how much to diagnose and treat) and not kind (whether to diagnose and treat at all). Most clinicians do not think of defending the legitimacy of mental illness and its treatment any more than surgeons think of defending the existence of surgery. For surgeons, the relevant question is when to utilize surgery, not whether surgery should be used at all. In the same way, clinicians think actively about when to diagnose and apply treatments for mental illness and are usually quite skillful in helping patients understand their plight. But few of us think about mental health practice in a general way or feel compelled to explain the generalities to patients and their families.
What results is a strange dichotomy in our culture: Clinicians treat mental illness as real but do not sound as if they know it is real. The public, on the other hand, says that mental illness is real but acts as if it is not. To be a bit more precise: The public acts confused about the nature of mental health, as well it should be, judging from public discussions of the subject. On the one hand, people rightfully accept the pronouncements of medical authorities, government agencies (such as the National Institute for Mental Health [NIMH]), and nonprofit groups (such as the National Alliance on Mental Illness [NAMI]) that mental illness is both real and treatable. On the other hand, people live with the uneasy sense that something is deeply wrong with mental health treatment, a sense fed by uncontradicted critiques of psychiatry. It is as if people viscerally know something is rotten in mental health and cannot stop searching for it. People suspect that there must be some source of corruption and mismanagement, even if they are not really sure whether there is widespread corruption and mismanagement. And people feel that psychiatry must have a shaky or nonexistent scientific basis, even as the public “oohs and aahs” over the latest neuroscience research. The public rarely hears a full explanation of our mental health practices and rarely hears about the overwhelming scientific evidence that supports such practices. And so, most people affirm the goodness of psychiatric treatment while strenuously avoiding it.
The signs of public ambivalence are not especially hard to notice: Acceptance of mental health diagnosis and treatment is growing, while at the same time rates of treatment do not increase. Understanding of mental illness is growing, yet stigma continues (
Livingston and Boyd 2010;
Parcesepe and Cabassa 2013). Governments and insurers now accept that mental health should be addressed as other medical problems, yet mental health treatment is handled in a drastically different fashion by both. We discriminate against mental disorders at the same time we declare such discrimination illegal. Our own patients go to great lengths to get treatment yet still feel “weak” for seeking it and ashamed of receiving it. They doubt the reality of their illnesses and the legitimacy of their treatments, regularly going on and off medications, cycling in and out of treatment. Patients, like the rest of the public, know that mental illness is real but feel as if it is not. They see the necessity of psychiatric treatment but feel that it is self-indulgent.
The national tension about mental health is not dramatic, but the results are disastrous. The ambivalence that we Americans have toward medical treatment of mental illness costs thousands of lives every year and incalculable levels of human suffering. While we accept mental illness in general, we reject those who carry it and socially distance ourselves from them (
De Pinto and Backus 2019;
Parcesepe and Cabassa 2013). While greater numbers of people access mental health care, deaths from substance use and suicide rise dramatically
(Woolf and Schoomaker 2019). By law, insurance companies must cover mental illnesses as they do other medical problems, yet in practice this does not occur (
Appelbaum and Parks 2020). Psychiatric treatment is grossly underfunded and overcontrolled by insurers and governments. For years, everyone has agreed that people with severe mental illness should receive the highest levels of treatment and social support. Yet treatment of severe mental illness in this country constitutes a scandal and a human rights disaster. Everyone knows that individuals with severe mental illness are more likely to be jailed than treated (
Torrey et al. 2010). Everyone knows that treatment funding is preposterously low for those with serious illness, and yet the situation remains unaltered.
If we fully believed in the medical realities of mental illness, such events would not be tolerated. Imagine, for instance, that severe forms of cancer received no more treatment and research funding than mild forms. Imagine patients with metastatic cancer languishing in the streets because of utterly inadequate social and medical support. Imagine that all forms of treatment for diabetes were underfunded except for outpatient appointments and medications, leaving those with ketoacidosis, hyperglycemic crisis, and osteomyelitis to fend for themselves as outpatients. What if people with medical illness and delirium were regularly jailed with minimal medical care due to being combative or socially disruptive? It is difficult to imagine, because such actions violate common sense and simple humanity.
This ambivalence is costing patients dearly, and we who are mental health professionals cannot simply wait for the situation to improve. Due to the COVID-19 pandemic, the long-term situation is far more likely to worsen than improve (
Vindegaard and Benros 2020). The plight of our patients is already urgent. Therefore, the plight of our profession is urgent. It is time for the second-class status of psychiatry and other mental health care to come to an end. It is time for our national ambivalence to end. It is time for half measures in the treatment of mental illness to come to an end. And it is time for us to end it. We as medical and mental health providers have the authority, the experience, and the understanding to do so. We have the instrument (science) and the means (access to our patients and communities), and the goal is well within our reach—if we have the will to take hold of it.
Who Advocates?
Honestly, I am writing a book about advocacy, yet prior to becoming involved, I would never have sought out a book or lecture on the topic. I am a psychiatrist in long-term private practice. I spend my time in individual dialogue with patients, offering psychotherapy and biological treatments to one patient at a time. Though I have spent time in academic and research settings (and continue to teach), I find my clinical work to be overwhelmingly satisfying. I do not feel a great need to be out among large groups, and I only began regular public advocacy by chance. I have since then spoken about mental illness to large and small groups of almost every description—business leaders, NAMI members, faith groups, young adults, and of course thousands of patients. Yet I never thought of myself as an advocate, or even thought that I needed to learn about advocacy.
So who advocates? Most of us have the same reflexive response: someone else. To various degrees, we all support our professional organizations, advocacy groups such as NAMI, and government agencies such as NIMH. All of these are prominent public advocates, and all of these do an excellent job. But all of them would tell us that together they are not enough. The evidence itself tells us that they are not enough. We, the community of clinicians who treat mental health disorders, are enough. We are numerous enough and influential enough to push our larger culture to a complete acceptance of the realities of mental illness and the necessities of its treatment.
Over 38,000 psychiatrists are practicing in the United States (
Bishop et al. 2016). This number pales in comparison to the more than 200,000 primary care physicians (
Agency for Healthcare Research and Quality 2018b) and 50,000 nurse practitioners in primary care, along with over 30,000 physician assistants (
Agency for Healthcare Research and Quality 2018a). In mental health, there are more than 350,000 licensed social workers (
Salsberg et al. 2017), 100,000 licensed psychologists (
American Psychological Association 2014), and 250,000 mental health therapists and addiction therapists (
U.S. Bureau of Labor Statistics 2019). Given these numbers, it seems safe to say that there are about a million professionals who regularly treat mental illness in this country, not including nurses, nursing assistants, crisis line workers, and mental health aides and technicians. There are too many to count, and more than enough to form a critical mass for the cultural change we need.
All of these million or so people advocate. Everyone reading this book is an advocate. Everyone who explains mental illness to a client or patient or friend advocates. Everyone who recommends a treatment for mental illness advocates. Everyone who supports family members with mental illness advocates. When we offer information to trainees, support personnel, and fellow clinicians, we advocate. When we talk to a friend about depression or a family member about alcoholism, we advocate. Most of us do not think of ourselves as advocates because we engage only in grassroots, person-to-person advocacy. We advocate unofficially and unconsciously, but this is the most important kind of advocacy. When someone we know and trust tells us about mental illness, we are inclined to listen.
And all of us together have been powerful advocates. In truth, the last couple of generations have seen astounding improvements in our cultural understanding and response to mental illness. Put another way, there has been more progress in understanding and helping those with mental illness in the last 70 years than in all eras of previous human history combined. Every advocate and every mental health professional should take justifiable pride in this fact, and every one of us should feel grateful for the generations of advocates and educators who came before us. Psychiatrists, psychologists, social workers, physicians of other medical specialties, researchers, members of NAMI, families, and people with mental illness have all contributed mightily to this cause. The medical and social treatment of those with mental illness is unrecognizable compared with treatment of the mid-twentieth century: We now have scientifically validated treatments of all major forms of mental illness. We have widely shared standards for diagnosing mental illness. Mental health care is accepted and practiced as an integral part of medical care. At least in principle, we have agreement by the government and insurers that mental illness is true medical illness. Parity between mental and medical illness is now a matter of law. The public, researchers, and medical professionals agree that mental illness is biologically and medically real. Mental illness is no longer a taboo topic in the popular culture, and sympathetic treatments appear regularly in film and television. Patients and families are empowered participants rather than helpless victims.
All of us should feel immensely proud of our collective efforts. From a wider historical view, the results have been spectacular. We should all feel proud, but at the same time we can all do better. All of us can do more in ways that are congenial to our individual personalities and habits. All of us can be better prepared to educate, more up-to-date and confident in our knowledge base. All of us can be more attentive for opportunities to advocate outside of the clinic, and braver in responding to them. All of us can be more clear, powerful, and on point in the way we present the information. All of us have community connections among extended family, groups of friends, faith communities, book clubs, volunteer organizations, sports organizations, and internet chat boards. And all of us can wield greater influence on behalf of those countless millions who face mental illness. I hope that this book will be one of many tools to help us do all of these things.
How Do We Begin?
All mental health clinicians know the following from experience: If we want to help others heal, we need to pursue healing in ourselves. We cannot offer others what we do not have. So we need to embody the change we seek to bring about in our culture. If we intend to “heal” our national ambivalence about mental health, we need to resolve our own ambivalence first.
In one way, the information in this book—and the information that the public needs—is already part of the professional DNA of every competent mental health practitioner. We all implicitly know that mental illness is real medical illness, that it is deadly serious, that treatment is anything but hopeless. But in another way, we all have our own residual doubts and biases, hindrances that keep us from true clarity on this issue and from advocating for our field in a straightforward, unhesitating way. When we and colleagues in our field still feel ashamed about our own mental illness, when so many of us still avoid full treatment of it, when so many of us have to avoid fully disclosing our mental illness to medical employers and professional organizations, it is clear that our professional culture still embodies some of the residual ambivalence that most of us carry. So I hope that this book will provide more than a review of the information we all need for advocacy and education. I hope that the reading experience will foster a full emotional conviction to accompany our intimate knowledge of the realities of mental illness. Without such emotional clarity, we will never have the motivation or the will to do the community work we need to do.
Although personal and emotional empowerment is most important, we also need conceptual clarity to advocate more effectively. We need the right information at our fingertips, and it is often different from the information that we need to practice as mental health professionals. I have tried to summarize this information as concisely as possible. All of us “know” the basic information of mental health science contained in this book, but we all need to master this information, not through a one-time review, but through a regular process of relearning and reintegration, each time at a deeper and more thorough level. I have personally been over this material hundreds of times, and each time I review it, I experience it as new, exciting, and powerful. Each time, I learn and understand it more deeply. Each time, I experience a shock of recognition, a sense that I knew this before but did not truly know and grasp the overwhelming significance of mental health for myself and everyone else in our culture.
In brief, our task is to thoroughly integrate this information into the emotional, social, and cognitive levels of our nervous systems. I do not think this task should be daunting. On a deep and intuitive level, we understand the realities of mental illness and its treatment. We could not practice effectively if we did not. We are most of the way there. But all of us have pockets of ambivalence, based on gaps in our education, personal issues with mental illness, and, most of all, old attitudes and feelings that color our current views. And we must address these old attitudes.
More than any other group, mental health practitioners understand that the past colors our view of the present. Yet, like every other discipline, psychiatry suffers from an unconscious hangover of old attitudes and old ways of thinking. Most of us seem to fall back into these when publicly speaking of mental health, even if they influence little of what we do as practitioners. Still, they confuse us and our listeners when we attempt to engage with widespread skepticism about our craft. And so we need to name and correct them.
How Not to Advocate: Avoiding Dangerous Dichotomies of the Past
These old ways of thinking reflect unreal dichotomies, “either/or” approaches that do not honor current holistic ways of understanding our field. These black-and-white characterizations usually distort the many-shaded nature of reality and use one truth to cancel out another. The history of mental health is littered with such long-running debates as genes vs. environment, conscious vs. unconscious mental life, and the importance of behavior vs. affect vs. cognition. We have to take particular care to avoid these dichotomies when speaking publicly.
Knowing Everything vs. Not Knowing Anything
We do not know the central pathology of any of the major mental illnesses, including major depression, bipolar disorder, and schizophrenia. Internal and external critics therefore assert that mental illnesses are medically unproven and unsubstantiated. Of the medical professions, psychiatry is the only one in which not knowing everything equals not knowing anything. Yet only in psychiatry (among medical specialties) does not knowing everything equal not knowing anything. But ignorance about what precisely causes depression (for instance) does not mean that depression is not medical. For centuries, doctors knew that cancer was real medical illness, even though the cause of cancer (DNA alterations) was not fully explicated until the 1960s and 1970s. Today, doctors can treat migraine headaches without knowing the precise cause. No one doubts the medical reality of migraine headaches. Similarly, we have more than enough scientific evidence that major depression is medically real and devastating, even if we do not yet have the neuropathological holy grail for the cause of depression. We know that the major mental illnesses are all associated with structural and functional brain changes, genetic contributions, cellular and subcellular dysfunction, increased inflammation, medical comorbidities, medical disability, and substantially increased mortality (see
Chapters 5 and
6). There is overwhelming evidence that mental illness is real, regardless of what we still do not know about it.
In most of our public discussions, we need to remember that public debates have very different contexts from “in-house” debates. In public, there is no context to statements such as “We still do not know exactly what happens to cause depression in the brain.” Or rather, the context is the vague impression that mental health treatment is based on unscientific foundations. Those outside of our field have little sense of the flood of genetic, brain imaging, microscopic, hormonal, inflammatory, functional, and epidemiological studies on mental illness, which together paint a clear picture of mental illnesses as both biological and devastating. We as mental health professionals are not going out on a limb when we assert the realities of these illnesses and their treatments, and we do not need to hide the fact that so much remains unknown. The brain is the most complicated thing in the natural world, and knowing a lot about it (as we do) does not mean we know everything about it. We know an immense amount about mental illness, and we do not know an immense amount about mental illness. Both statements are equally true. Yet what we know is more than enough to scientifically justify the diagnosis and treatment of these disorders.
Many of us who went through medical training heard the following saying countless times: “Medicine is 80% gray and 20% black-and-white—but you had better know that black-and-white.” In a general way, I suspect this applies to mental health as well. There are unambiguous truths, and we should emphasize these in public discussions. Nevertheless, much of what we “know” is gray and uncertain, and we can candidly admit this at the same time.
Biology vs. Psychology
Dualistic thinking emerges during childhood and may be a part of human nature (
Bloom 2005). Human beings tend to divide biological, physical events from psychological, mental ones. So even when we as mental health professionals think and speak holistically, our audiences may hear us dualistically. When we say that mental illness is as biological as cancer or diabetes, we may be heard as being reductionists who deny mental factors in mental illness. In truth, an illness that is “more” biological is not any “less” mental. The two coexist at all times and are not in competition. We can be firm about the fundamental biological dysfunction at the root of mental illness while being just as clear about the reality of psychological dysfunction in the pathophysiology and treatment of mental illness. Psychological and social realities are also real; they simply exist at a higher level of complexity than more simple biological events (
Kendler 2005).
Medication vs. Psychotherapy
Psychiatry and psychology have a long history of divisions between psychologically oriented clinicians and researchers on the one hand and biologically oriented ones on the other. On one side, many pharmacologists of past generations once dismissed psychotherapy as unscientific psychobabble. On the other, many psychotherapists viewed medications as mind-numbing drugs that could never address the roots of mental illness. Many commentators continue to describe the mental health field in this way, so we as advocates need to go out of our way to dispel this view (
Carlat 2010;
Luhrmann 2001). Thanks to extensive scientific research, the days of such divisions are over. Psychotherapy has biological effects (
Barsaglini et al. 2014), and biological treatments usually complement psychological ones. We can therefore be utterly clear about the real and effective nature of psychological and social treatments, which likewise are not less biological than medicines and neural stimulation therapies.
Psychiatry vs. Other Medical Specialties
There is a subtle but pervasive understanding, even among physicians, that psychiatry lags behind other medical specialties. Psychiatry has long been seen as less scientific, more subjective, and simply less effective than other established specialties, like oncology and ophthalmology. A common knee-jerk reaction is to view psychiatry as a second-class specialty in comparison to others. This impression, however, is superficial and outdated. Psychiatry now rests on an immensely sophisticated and rapidly deepening foundation of neuroscience. Research shows that our treatments compare well to those of other common and chronic medical conditions (
Leucht et al. 2012). Yet critics routinely assume that any doubts or inconclusive data about mental health care delegitimize the entire undertaking. Why, for instance, can one negative review of antidepressant medications create a widespread sense of crisis, after decades and hundreds of studies on antidepressants (
Fountoulakis et al. 2013;
McAllister-Williams 2008)? And why does the same occur in regard to stimulant medications for ADHD, when studies show a high level of effectiveness for these medications (
Banaschewski et al. 2016)? Studies of psychiatric medications are performed according to the same scientific standards as those for other types of medications, but the handwringing begins immediately when these studies are challenged, as if we share this secret conviction that our treatments are unreal and ineffective. Even if some of our treatments ultimately prove to be inadequate or misguided, this would not separate psychiatry from any other medical specialty, including oncology and gynecology (
Prasad et al. 2013).
A related issue concerns attitudes about systems of psychiatric diagnosis such as DSM. Psychiatrists and other professionals have long maintained that we do not know how to precisely define or delineate mental illness. Internal and external critics of psychiatry tend to take this as
ipso facto proof that mental illnesses are unreal, or at most the cultural creations of psychiatrists (via DSM). In fact, many philosophers of medicine also hold that we cannot precisely define and delineate medical illness (
Stein 2008). Yet no one concludes that medical illnesses do not exist or that they constitute a fraud on the part of doctors. No one really believes that our difficulties defining the precise boundaries of medical illness are going to invalidate the realities of severe medical illness. However, that is precisely the conclusion that many outsiders draw about mental illnesses.
Although illnesses like chronic fatigue and fibromyalgia remain difficult to define or classify, no one attacks the credibility of rheumatology in the same way that psychiatry comes under fire for entertaining even the possibility that complicated grief or behavioral addictions might constitute mental disorders. The example of ADHD, a well-established disorder, is especially interesting. Studies have shown that ADHD is more heritable than type II diabetes, heart disease, or breast cancer and responds better to treatment than most mental and general medical illnesses (
Banaschewski et al. 2016;
Brikell et al. 2015), yet it remains a favorite of critics, who have by and large convinced the public that mental health professionals are creating a nation of speed addicts by treating this serious disorder. Certainly, we should regularly reevaluate the widespread diagnosis and treatment of children with putative ADHD, as well as the risks of stimulants, but areas of overdiagnosis and overtreatment do not invalidate the existence of this biological disorder, which rests on scientific data.
Mental health care will continue to grow and change over time. Treatments and diagnostic instruments we use today will become obsolete. We need both internal and external critics to help us reform and refine our practices. But when deep questions about mental health care arise, we should be wary of concluding that all mental health diagnosis and treatment is flawed. Instead, we should insist on the same standards of legitimacy for psychiatry that we do for other medical specialties.
Mild vs. Severe Mental Illness
A large portion of the public has the impression that “mental illnesses” or “biologically based mental illnesses” refer to illnesses such as schizophrenia or bipolar disorder, but not to “milder” forms such as depression or anxiety. For instance, a national poll showed that over half of people believe depression can be caused by personal weakness or failing, at the same time that 73% affirm “mental illnesses should be treated no differently from physical ones” (
Kaiser Permanente 2017). While it is intuitively easier to believe that disorders like schizophrenia are the result of biological brain dysfunction, the view that various forms of depression and anxiety are not biologically based is a pernicious misunderstanding. It widens the gulf between so-called “normal” people with milder illnesses and “abnormal” people with severe ones, directly contributing to stigma.
A related issue is the tendency to unfavorably compare treatment for mild vs. severe forms of mental illness. Mental health professionals and advocates are rightly appalled at the gross underfunding of treatment for severe mental illness, but frequently contrast this with possible overtreatment of mild forms of illness in clinic settings. For instance, Allen Frances published a powerful and much-discussed piece in the
Huffington Post,
Psychology Today, and
Psychiatric Times contrasting 1) “the overtreatment of the worried well” with 2) “the neglect of the really sick” by all responsible organizations (
Frances 2015). Ethically, he was surely correct to juxtapose the two, but members of the public might also be forgiven for taking away the impression that those with mild to moderate mental illnesses are really the “worried well” who do not need treatment at all. Even worse, such an image puts those with severe mental illness back into their own segregated camp, unrelated to the plight of those with other forms of mental illness. In truth, everyone is in this together. Those with milder forms of depression and anxiety have mental illness, and so do those with more severe forms. All should be treated appropriately, and certainly those persons with severe illness should receive the lion’s share of resources, as in every other branch of medicine.
Us vs. Them
This brings us to the most dangerous dichotomy of them all: us vs. them. The idea is that there is a different sort of person who has mental illness (such as the “schizophrenic”) who is not like everybody else and who needs special pity. I feel confident from personal experience that this notion runs terrifyingly deep in our cultural attitudes, even among those with the best intentions. People have frequently attempted to encourage my advocacy with comments such as “It’s so good to do something to help them” or “I feel so bad for those people.” As long as those with mental illness are “them,” as long as “they” are the crazy, the weird, and the helpless, attempts at advocacy will fail miserably.
Only the fundamental realization that everybody is in the same boat with regard to mental illness can change the approach to mental illness forever. The fact that around half of people will experience mental illness in their lifetime (see
Chapter 3) means that having mental illness is as common as being a woman or a man. And if half the population experiences mental illness, then it is certain that everyone is affected, at least indirectly. Everyone has someone they care about who has experienced mental illness. Mental illness concerns everybody; it concerns the human condition. And once our culture has deeply integrated this one reality, a new era of mental health will finally begin.
Medically speaking, we do not culturally separate those with mild diabetes controlled by diet from those with “brittle diabetes” or advanced end-organ damage. We do not ontologically distinguish those with mild hypertension from those with malignant hypertension. Nor do we act as if treatment of people with basal cell and thyroid cancers should be in competition with treatments of metastatic cancer. Why then do we act as if severe mental illness constitutes its own unique category? I suggest that this attitude, however well intentioned, is the result of residual stigma, not progress in mental health. And it is time that those of us who advocate put an end to it.
Finally, there is one more version of the “us vs. them” dichotomy that is unique to mental health professionals. Often, in our professional roles, we forget that we too are part of the “us” affected by mental illness. The limited available evidence suggests that lifetime rates of mental illness are even higher among mental health professionals than in the general public, possibly around 70%. Similarly, mental health professionals seem more likely to experience mental illness among family members, something that prompts many of us to enter the field in the first place (see
Chapter 7). Therefore, we mental health professionals
are the ones with mental illness, at the same time that we are the ones who
treat mental illness. We are the “them,” which also means that they are the “us.” On the deepest level, the line that separates us from our patients, and from the rest of the public, is an illusion. In clinical practice, we keep our personal lives separate, as we should. But as advocates, we need an implicit attitude of being one with those we address, whether they are patients, family members, or community advocates.
Thus, the important practical virtue for advocacy is humility. I hope that at least part of the time you will be advocating (and reading this book) from the perspective of someone who has mental illness, or from the perspective of a family member of someone with mental illness. Even if this is not the case, all of us who are medical and mental health professionals are deeply connected to people who have mental illness. This is a professional issue, but it is also a personal issue. And so I urge you to approach this topic from a personal perspective so that you can in turn approach people outside our field. The days of medical paternalism are over. As professionals, we are just as often suspected as trusted, and doubted as believed, by members of the public. Therefore, we need to approach community members as equals, but equals who can remind them of the scientific and personal realities of mental illness and its treatment. In other words, we professionals have just as personal an interest in mental illness as anyone else. We personally care whether mental illness is real and whether people get appropriate treatment. We are not authorities forcing our own professional interests on the public. We are members of the public who have the same interests as everyone else on these issues.
For What Do We Advocate?
The approach of this book is simple: We need to advocate by communicating the fundamental scientific basis of mental health care, a basis that most clinicians assume but do not articulate. Although we all know the following statements are true, few of us bother to regularly articulate them:
•
Mental illness is common.
•
Mental illness is serious.
•
Mental illness is treatable.
These assertions would not raise an eyebrow in any mental health or even medical clinic. And members of the public recognize that these constitute the party line on mental illness (as the polls show). But members of the public seem to take these statements more as ideological beliefs than as descriptions of reality. They know they “should” believe this catechism, and they try their best to believe it. But they are not wholly convinced, and their deeper beliefs about mental illness repeatedly resurface in their behaviors. They do not realize that there is a bedrock of science supporting these assertions. They do not know that these assertions are now beyond serious scientific debate. They do not yet feel the emotional conviction that comes with deeper knowledge about the realities of mental illness and mental health. Neither do most of our intelligentsia—our journalists, historians, and cultural critics who comment on mental illness. They all need to learn, and we need to help them do so.
Rather than hearing broad generalities, members of the public need to experience a deeper, more detailed level of understanding for themselves. They need to see the science for themselves. They need to look at the numbers, the graphs, the headscan photos, and even some of the studies for themselves. Because mental health science is immensely complicated, these only amount to examples. But specific examples will carry a power far beyond that of generalities. Though most will not remember the details of such examples, they will carry away a deeper conviction that mental illness is indeed real medical illness. And perhaps for the first time, they will experience mental illness and its treatment to be grounded in reality rather than cultural consensus alone. Treatment of mental illness will then become as intuitively obvious as treatment of a broken bone or appendicitis.
Approach of the Book
“See one, do one, teach one.” All of us with medical training have heard this saying, and most of us have practiced it. I often think how appalled patients would be to know that this has been a longtime refrain in our medical education system. Nevertheless, there is a great deal of wisdom in this proverbial saying. Medicine (including mental health treatment) is a practical art. It is a practical art based on science, but it is primarily about doing, not just knowing. Therefore, the best way to learn medicine is to observe it and then do it, once we know enough to understand what we are doing. I believe that advocacy is also a practical art and can best be learned in a similar fashion.
Most medical and mental health training requires spending some time in the classroom, but more time observing and practicing our art. We begin as observing students, move up to being carefully supervised interns and residents, and finally attempt to become independent practitioners and teachers of our craft. This book follows a similar principle, though in a much more modest way: The rest of this book is presented as a “see one” experience, an example of advocacy in action. Therefore I have written the bulk of each chapter as if I were addressing members of the public for the purposes of advocacy. It is meant to teach (sharpen what we know about mental illness), but even more to lay out a way of articulating and presenting the nature of mental illness and mental health treatment.
In spite of my introductory remarks, I do not believe that my colleagues need much formal training in how to speak to people, how to make an emotional connection, or how to deal with contentious issues. We as mental health professionals do these every day in clinical practice. Although admonitions such as “be concise” or “use everyday language” are correct, they do little to help us refine our ability to advocate. Personal stories and case examples are powerful tools in advocacy, but I will assume you have plenty of your own to offer. So I will offer only a smattering of these, and predominantly provide an example of advocacy for you to adapt to your own style and needs. For those seeking more specific direction, I have included a section with some practical reminders at the end of each chapter called “Advice for Advocacy.” But, more importantly, I sincerely hope that you will improve upon this model as you consciously observe yourself in various forms of advocacy, and find what works for you and the specific people whom you address. All of us naturally take bits and pieces from our teachers and colleagues: sayings, attitudes, and important facts. And all of us combine and integrate them in a way that best suits our own personalities and practices.
As a “see one,” the chapters that follow are “addressed” to members of the public. The illustrations and captions have been presented in the same way. That is, the language and visual aids will be suited to the general public rather than reflecting the way that mental health and medical professionals communicate with each other. As advocates, our job is not to teach mental health science, but to translate science into the vernacular and the thought world of people outside our field. Therefore, I have written the bulk of each chapter as if I were addressing members of the public for the purposes of advocacy. The introduction to each chapter is addressed directly to mental health professionals, but the remainder is “spoken” as if to the public, the objects of our advocacy. This unusual approach is meant to provide an exemplar for advocacy, a template that you can adapt to your own needs and preferences. The result, I hope, is informal and open, but not disorganized or rambling. The sequence of ideas, the vocabulary used to express them, and the emphasis on particular topics have not developed randomly. All are based on my long experience with advocacy among nonprofessionals. All of them reflect an intentional way of approaching nonprofessionals for the purposes of mental health education.
For instance, I have avoided arguing with critics of psychiatry, regardless of whether they are internal or external. A debating attitude implies that the content of the information is controversial, when in fact it is established science. Criticisms of psychiatry are lumped together in
Chapter 4. At that point in the book, they serve to heighten the “dramatic tension” and increase motivation for a deeper level of knowledge about mental illness. Why do I not begin the book with criticisms of psychiatry? Because the most important way to introduce mental illness (after providing a few definitions) is to show that it relates to everyone. Why should you care about mental illness? Because you or someone you love has experienced mental illness. It matters to you personally, whether or not you knew it in the past. Only people who view mental health as personally relevant will bother to listen attentively to the rest of what we as advocates have to say about mental health. Therefore, the emphasis of the first part of the book is on epidemiology and the universal significance of mental health.
It would be tedious to detail my reasons for the myriad of other choices behind these pages. You will find it easy enough to evaluate whether they are helpful to your work. I hope that you will not be put off by reading chapters pitched at the level of laypersons rather than professionals. I have attempted to communicate in a way that is straightforward and fast-moving, rather than patronizing or simplistic. I hope that you will read the book from a personal and not merely critical perspective, and that you will experience the fascination, hope, and enthusiasm that I feel when contemplating the extraordinary edifice of science and medicine that stands behind our work. Those of us privileged enough to practice mental health care are among the luckiest people on earth, in my opinion. Our field gives us intellectual fascination, emotional connection, and ethical/existential purpose. And thanks to many decades of research, we can now appreciate that our work addresses the physical, emotional, and social well-being of our patients in real and effective ways. This information—the powerful science supporting our work—should energize and stimulate us, and likewise should energize the public on behalf of those with mental illness. Laid out before us, it should provide more than enough conviction that the time is ripe for cultural transformation and a new era in the treatment of mental health disorders. If it did not, I would be as surprised as I was disappointed. But it will do so, because such information ultimately rests on reality even more than on idealism, hope, and passion.
Advocacy in Action: Argument of the Book
With these preliminaries out of the way, let’s begin the “see one” part of the book. I would like to start with a summary of the whole book, so you know exactly where this discussion is going. The following chapters are filled with facts and details, so these paragraphs will give you a sense of the whole. I hope they clearly convey the central thrust of this book: Mental illness is common, real, serious, and treatable.
Chapter 2:
What Is Mental Illness? This book is about mental illness. What do I mean by mental illness? I mean a kind of medical illness that is like every other kind of medical illness, with one addition: mental illness is also mental. While we recognize mental illness from mental symptoms, mental illness also has all the characteristic of medical illnesses.
Mental illness is medical illness that primarily affects mental functions. So when the part of the body that we need for normal moods gets sick, we can have a mood disorder like major depression or bipolar disorder. Or if the part of the body we need for normal memory gets sick, we can have a memory disorder like Alzheimer’s dementia, and so on.
Chapter 3:
Mental Illness Is Common. Why should you care about mental illness? Mental illness is relevant to you, because it is relevant to all of us. Mental illness affects you personally, either directly and/or indirectly. How do we know? Several large and detailed studies of the U.S. population find stunningly high rates of mental illness. About one in four persons experiences mental illness every year, and more than half the population will do so during a lifetime. Half of all Americans will experience mental illness at some point in life. And statistically, that means either you will be affected yourself or someone you love will be affected. So mental illness concerns you indirectly through people you love, or directly by experiencing it yourself.
Chapter 4:
The Myth of Mental Illness? How can so many people have mental illness? Some people do not believe mental illness could be so common. They include doctors, university professors, and even psychiatrists and psychologists. They say that the huge numbers in these studies cannot be real because mental illness is not truly real. Some of them do not believe that mental illness is a physical illness. Others think that we simply do not know whether mental illness is medically real, and accuse doctors of creating definitions of mental illness that suit their own ideas. Finally, some think that while some mental illnesses are probably real, doctors have over-diagnosed and overmedicated people without much justification. But all of them believe that mental health care lacks a medical and scientific foundation.
Chapter 5:
Mental Illness Is Real. How do we know that mental illness is medically real? Because the scientific research is clear and definitive. We have countless scientific studies that document the biological reality of mental disorders: Genetic studies show that the risk of mental illness is physically passed down over generations. Head scan studies show dysfunction and deterioration of living brains during episodes of mental illness. We can show that hormones and brain transmitters change during mental illness. Other studies show increased inflammation in the body and brain at the same time. We have all this evidence, and much more.
Chapter 6:
Mental Illness Is Serious. There is another way to show that mental illness is real. We can show that mental illness has all the real consequences of any medical illness. As supported by facts in
Chapter 6, mental illness is serious. Why do we dread medical illness? We fear death, disability, and deterioration of our health. These three consequences—death, disability, and deterioration—are just as common in mental illness as in other types of medical illness. For instance, suicide (sudden death from mental illness) is the fourth leading cause of death for adults ages 18–65. And mental illness causes people to spend more time in disability than any other kind of illness. Finally, mental illness causes wear and tear on our bodies, increasing our risk of heart disease and other chronic illnesses.
Chapter 7:
Mental Illness Is Nobody’s Fault. Mental illness is bad news. But there is also some good news. No one is to blame for mental illness. It is not the fault of parents, of mental health professionals, or of the people who have it. Why does this matter? People with mental illness and their families have been blamed, shamed, and abused for centuries. Most people dealing with mental illness have experienced stigma and misunderstanding. So not blaming anyone
is a big deal. Understanding the real causes of mental illness would be even better, especially because the basic causes of mental illness are simple: genes plus stresses.
Chapter 8:
Mental Illness Is Treatable. Everyone knows there are treatments for mental illness, but few people know just how effective these treatments are. Most people know that we cannot (usually) cure mental illness, but most people forget that we cannot usually cure high blood pressure, diabetes, heart disease, or most other chronic illnesses. Yet we can treat them all. And it turns out that treatment for mental illness is generally as good as treatment for other chronic medical conditions. Medicines for mental health are just as likely to work as medicines for other conditions. And on top of medicines, we have powerful and proven treatments such as talk therapy and social supports.
Chapter 9:
Mental Illness Is Our Teacher: How can mental illness become our teacher? Mental illness usually begins early in life, when people are teenagers or young adults. Facing chronic illness and limitations as a young person is excruciatingly painful. At the same time, those who do face the realities of illness and limitations in life develop a deep wisdom that we will all need at some point. They have learned how to accept life on its own terms and to find meaning and satisfaction in life despite the presence of pain and adversity. This is a profound understanding of the human condition, and we would all do well to listen and learn from it, because mental illness is just another part of the human condition, every bit as much as illness, aging, and death are.
Chapter 10:
A Vision of Unity. Mental illness affects everyone. Sigmund Freud had mental illness, and so have many famous psychiatrists and psychologists of history. Why should we remember this? We should remember that there is really no difference between people with mental illness and everybody else. “They” are not a separate category of persons. “They” are the doctors, the family members, the people with mental illness, the people who love people with mental illness. We are all in the same boat, and the sooner we all realize this, the sooner that boat will go in the right direction.
What is the point of this book? The point is that you or someone you love has had or currently has mental illness. And if you or someone you love has mental illness, it is possible to know and fully experience the following truths with confidence and clarity:
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Mental illness is common: You are not alone.
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Mental illness is real: You are not making this up.
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Mental illness is serious: You are not weak.
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Mental illness is nobody’s fault: You are not to blame.
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Mental illness is treatable: There is help.