What Is Mental Illness?
by Rachel Long, MD
Monroe Clinic, Monroe WI
Prairie UU Society
presented on Oct. 9, 2011

In my lay ministry on mental health, one of my goals is to discuss the connection between our understanding of mental illness and mental health and our religious and spiritual quest. Today I will talk first about how society has viewed the people who have mental illnesses, especially in the US. Then I plan to open a conversation about what our concepts of mental illness say about who we are as a society and as individuals, our sense of self, and what kind of control we have over how we lead our lives.

I need to start by describing what kinds of illness we are talking about. I will use today's language. When we think of the most severe mental illnesses, we usually think of schizophrenia, a condition where people often have hallucinations & delusions, and mood disorders including depression and manic depression. We also think of developmental disabilities like autism or various forms of mental retardation. In the modern world, people live longer, so we add dementias like Alzheimer's. But all of these conditions can sometimes be mild and manageable, and other conditions we usually think of as mild can be disruptive or even disabling. Some examples are panic disorder, obsessive-compulsive disorder, post-traumatic stress disorder, or even attention deficit disorder. You have probably heard of most or all of these disorders and know something about them, because taken together they are common. How common? That is difficult to answer, because it depends on how broadly we define them. According to the National Alliance for the Mentally Ill and the National Institute of Mental Health, in any given year about 1/4 of adults suffer from a mental disorder, and about 6% from serious mental illness.

What is it that makes some people feel and act so differently from what is considered normal? What makes some people so miserable and uncomfortable when their life situations don't seem to warrant that level of distress? You have certainly heard many words used to describe the people I treat in my practice, and the behaviors associated with them. Think about the feelings and beliefs contained in these words:

He's crazy!
She should be in a loony-bin.
That's completely insane.
That's nuts.
That's sick!
He's just neurotic.
He's demented!
She's such a worrywart.
What is wrong with you?
Fear, condemnation, revulsion, rejection. Not like us. Unacceptable. Misguided. Immoral.

But think about how mainstream and accepted mental illness has become – almost trivial, something we all recognize:

She got me so depressed.
Oh, don't be so paranoid.
I just about had a panic attack!
I got pretty obsessive-compulsive about it.
I have a split personality about him.
Sorry, senior moment.
I could really use a shrink today!
Serious mental illness continues to be frightening, in large part because the experience of milder symptoms is so common. It's too easy to imagine loosing control and becoming more like those people who we talk about as being different than us, other. We exclude them from our culture, make them seem more different than they really are, because it's too scary to be reminded it could be us.

If we look at the history of mental illness, we are looking back as far as we have written history. People have been fascinated for millennia by portrayals of people who seem to have lost control of their thinking or perceptions, or are suffering emotional or psychic pain. Ancient and modern literature are filled with such portrayals. They fascinate us for the same reason they frighten us – they remind us that our very sense of self, of who we are and how we experience of the world, is vulnerable to disruption. And we dread the idea that we could lose control of our own choices, that someone else could take control of our destiny. Worse yet, those who take control might have ideas very different than ours about what normal is, and try to shape us to match that view. Maybe we could be forced to change who we are.

How do we reassure ourselves it couldn't happen to us? One way is to blame the victim. If we assert that those with mental illnesses are responsible for their symptoms or actively choosing to behave in an aberrant way, it's easier for us to dismiss their suffering. We wouldn't let that happen to us, would we? We would know better, or be stronger, or something. These days we don't let ourselves think too hard about what exactly protects us from a similar fate. But in the past we had more definitive answers. Often we turned to the supernatural to explain these symptoms and behaviors, the way we explained so many other things we couldn't understand, Over the years we have decided mental illness is brought on by witchcraft, demons, or Satan himself. The demon might need to be exorcized, sometimes by torturing or even killing the person with the symptoms. Or perhaps someone else has caused the problem through witchcraft. The culprit must be identified and punished, or even put to death to protect the community. The Salem witch trials were a particularly horrible result of this way of reacting to strange symptoms or behavior. On the other hand, mental illness, like many other illnesses, might be punishments for bad or taboo behavior. In that case it is the person with the symptoms who is ostracized, or further punished or imprisoned.

But for many centuries there have been attempts to explain mental illnesses medically or psychologically, which have generally led to more compassionate treatment. In the book Madness In America, Lynn Gamwell and Nancy Tomes describe how people with mental illnesses were treated throughout American history. I was surprised to find that in the 1700's there was a high level of tolerance and care for these individuals. Families of mentally ill persons were expected care for them. If this wasn't possible individuals were often boarded in private homes at public expense. So long as they were peaceable, they were allowed their freedom and independence. At the same time in Europe, such people were being warehoused in institutions with terrible conditions. The Quakers were responsible for a wave of reforms instituting what was referred to as "moral treatment," meaning focus on emotional and spiritual experience rather than experience of the material world. Asylums were founded in America in the 1800's with the idea that people who were mad still retained their spiritual worth, their "inner light," and some ability to reason. The treatment involved exercise, work, and recreation, along with the expectation of behavior consistent with social norms. Many asylum doctors were looking at social influences and psychological reactions as contributors to illness. Some hypothesized that a melancholy patient might have weak nerve fibers, and illness was triggered by stresses such as business worries, overindulgence in masturbation, or intemperance. There was an upsurge in religious revivalism in the mid-1800's, and asylum physicians were concerned that some kinds of religious experience could make patients more ill. In 1835 Amariah Brigham, the superintendent of the New York Lunatic Asylum, wrote the book Observations on the Influence of Religion upon the Health and Physical Welfare of Mankind, in which he stated:

"If a number of people be kept for a long time in a state of great terror and mental anxiety, no matter whether from a vivid description of hell and fears of dropping immediately into it, or from any other cause, the brain and nervous system are likely to be injured."
Unfortunately, protecting people from such influences and treating them humanely didn't generally get them well. Money ran out, public interest waned, and conditions in asylums again deteriorated. I won't go into some of the horrific ways some patients were treated in these institutions, other than to say no one could be sane in these conditions, let alone recover from mental illness.

There were always physicians trying to find effective treatments. They believed for many centuries that an imbalance of the four humors, blood, phlegm, yellow bile and black bile, caused mental illnesses and influenced personality. Balance was thought to be restored by bleeding or purging the bowel. They did autopsies looking for brain abnormalities, Most physicians assumed a close connection between mental and physical afflictions, an attitude that is again prominent in medicine and psychiatry, though we are thankfully not bleeding or purging our patients these days.

But in the first half of the 20th century, the focus of psychiatry was largely psychological treatment. Psychoanalysis was launched by Sigmund Freud, who thought that most mental symptoms were caused by inner conflict, mainly arising in early childhood. He was focused on the battle between our desires and our conscience (which he called id and superego), and how we can be unaware of our own conflicts because we keep these thoughts in what he called the unconscious mind. Some of his followers focused on how modifying the external influences in childhood, especially child rearing practices, could help prevent mental illness. Therapy based on these concepts has helped many people, especially those with anxiety disorders. But for many, especially those with more severe illnesses, psychoanalysis and related psychotherapy treatment provided no significant benefit. Then in the 1950's we had a true breakthrough – medications were developed that were often highly effective for schizophrenia and manic-depression, illnesses that previously had no real treatment.

But before we talk about what happened to psychiatry when medications hit the scene, I want to explore another aspect of mental illness, the issue of social control. What is considered illness has always been influenced by the general mores and beliefs of a society at any given time. Or said another way, labeling certain behaviors as signs of mental illness has always been a way for those in power to compel conformity to social norms. Ideas about race and ethnicity, gender, and sexual orientation influenced diagnosis and treatment of those with mental illnesses. I will describe just a few particularly egregious examples. I won't discuss the abuse of psychiatry for political purposes except to say that people all over the world have been and continue to be labeled mentally ill, and institutionalized solely because they oppose their political leaders. Here I am addressing somewhat more subtle problems with those in power defining what is an illness.

Throughout the 19th century, asylum doctors claimed that political freedom caused insanity among primitive peoples. It followed that society should guard against unleashing these irrational forces, through slavery for blacks and through confinement in reservations for native Americans. This quote is from John Galt, 1848, while superintendent of Eastern Lunatic Asylum of Virginia:

"The proportionate number of slaves who become deranged is less than that of free coloured persons, and less than that of whites. From many of the causes affecting the other classes of our inhabitants, they are somewhat exempt; for example, they are removed from much of the mental excitement to which the free population of the Union is necessarily exposed in the daily routine if life; not to mention the liability of the latter to the influence of the agitating novelties of religion, the intensity of political discussion, and other elements of the excessive mental action which is the result of our republican form of government. Again, they have not the anxious cares and anxieties relative to property, which tend to depress some of our free citizens. The future, which to some of our white population may seem dark and gloomy, to them presents no cloud on the horizon."
Samuel Cartwright was a professor of medicine at University of Louisiana, considered an expert in "diseases of the negro." The state commissioned him to prepare a report in 1851 in which he stated:
"The Negro is a slave by nature, and can never be happy, industrious, moral, or religious in any other condition than that he was intended to fill."
He also claimed that several forms of mental illness were peculiar to blacks, including an obsessive desire for freedom, which he called "flight from home madness." According to him, any slave who attempted to run away more than twice was insane.

Irish patients were characterized as particularly depraved and offensive, and were segregated to avoid distressing the "better class of patients." This is from the 1858 report of the superintendent of the Massachusetts State Lunatic Hospital,where the word "race" refers to Irish vs. other whites:

"It would not be well to class the two races in the same wards, where each must bear from the other what was considered troublesome and offensive while in health."
As the women's suffrage movement gained in strength, medical arguments increased citing mental and medical problems women supposedly suffered when they engaged in unnatural activities. In 1873, physician Edward Clarke published an influential book entitled Sex and Education in which he blamed over-education of adolescent girls for diminished reproductive capacity physical and mental weakness including insanity, which he indicated would be inherited by what few children they could produce. Baltimore physicin William Howard warned in an article titled "Effeminate Men and Masculine Women"1900:
"The female possessed of masculine ideas of independence, the viragint (masculine woman) who would sit in the public highways and lift up her pseudo-virile voice, proclaiming her sole right to decide questions of war and religion, the female who prefers the laboratory to the nursery, is a sad form of degeneracy. The progeny of such human misfits are perverts, moral or physical."
Prominent psychiatrists in the late 1800's were also publishing books and articles on a link between creativity and degeneracy, which was assumed to be hereditary. This work provided the scientific basis for Nazi ideas of degeneracy. Cesare Lombroso in his 1864 book "Man of Genius" asserted that all creative individuals suffered from a type of degenerative, epileptic-like psychosis. In 1892 Max Nordau wrote
"Degenerates are not always criminals, prostitutes, anarchists and pronounced lunatics; they are often authors and artists. The tendencies of the fashions of art and literature have their sources in the degeneracy of their authors…the enthusiasm of their admirers is for more or less pronounced moral insanity, imbecility, and dementia."
At the same time, neurologists were publishing data on what they called neurasthenia, a collection of physical and mental symptoms they believed were due to the stress of high demands of society on "brain workers" such as businessmen. They believed one is born with a certain amount of nervous energy that can be exhausted by the demands of living in an upwardly mobile society. They believed it was a disease of upper-class men, whose brains were superior to working-class men and to women. When they found the numbers of such patients were distributed among the classes and genders more equally than expected, they changed the theory to include different forms of the disease, including higher or cerebral neurasthenia in upper class men vs. lower or spinal neurasthenia in the working classes, and a different version of neurasthenia affecting women that was generated from women's reproductive organs.

The famous patient Lucy Ann Lobdell Slater was a skillful game hunter and lived with another woman. She lived the second half of her life in an asylum where her family had her committed. Three justifications were given for declaring her insane; she insisted on wearing male attire, she called herself a huntress, and she supposedly threatened violence to herself and others, though there was never any evidence of violent or threatening behavior.

Psychiatrists disagreed for years about whether homosexuality was a disease or a normal variation. In 1935 Freud famously wrote a letter indicating homosexuality was "nothing to be ashamed of" and "certainly not an illness." But the American Psychiatric Association did not officially remove it from the diagnostic manual as a disease until 1973, and some psychotherapists continue to practice so-called "reparative therapy" to reverse homosexuality.

I give these examples to illustrate one of the biggest difficulties n the field of psychiatry and psychology – the definition of normal or healthy. Awful as some of these examples seem, the physicians quoted were likely acting in good faith, trying to be scientists, observing and drawing conclusions from what they saw. Yet in retrospect it is obvious how their observations were colored by the lenses through which they saw. How can the observer transcend their own time and place to find some more objective truth? Our training as psychiatrists encourages us to monitor and evaluate our own responses to attempt to mitigate this problem, but it is not possible to eliminate one's biases in a field where what we do all day is work with people whose stories and understanding of their own lives are just as subjective. Not just in psychiatry, but in all of medicine we are aware of how many treatments over the years have been ineffective or harmful. We know it can't be true that as soon as our generation began practicing, all our theories were accurate and treatments safe and effective. One of the major innovations to try to assure we are not repeating the same old mistakes is called "evidence-based medicine." It is a process of depending on scientific research to determine which treatments are the best options available, and treating the patients accordingly. This approach has been embraced by those who pay for health care, from insurance companies to the federal government, as well as those in medicine. Unfortunately there are many problems using this approach in practice, which I will describe. But first, let me bring you up to the present regarding the practice of psychiatry.

We left off around 1960, when psychoanalytic psychotherapy was still in its heyday, but effective medications were hitting the scene. In the last 50 years we have seen a tremendous transformation in our practice. Psychiatrists have increasingly become physicians who diagnose and treat certain types of brain diseases, and use psychotherapy to assist patients in coping with those diseases. When patients have problems that are treatable with psychotherapy without medications, they usually see a psychotherapist, who is usually a psychologist or a social worker. Since many conditions respond better to the combination of psychotherapy and medications, psychiatrists often work in partnership with these psychotherapists while we provide the medical part of the treatment.

It is hard to overestimate how much patients have benefited overall from the revolution in biological treatment of mental illnesses. Though we still struggle with some medications that have potentially serious risks, the benefits have been enormous. Most people with formerly disabling illnesses can find treatments that can get them functioning and feeling pretty well. There are now few psychiatric hospitals, and relatively few people needing long-term residential care. The exceptions are patients with severe mental retardation and dementias like alzheimer's, though we are making strides in these areas as well, especially in terms of prevention.

Psychotherapy too has benefited greatly from the focus on evidence and measuring outcomes. We have new forms of therapy, such as cognitive therapy and interpersonal psychotherapy, that are easier to learn and take much less time to administer. Some cognitive and behavioral techniques are adaptable to independent study, and there are numerous self-help and educational books for patients that can be very helpful even without guidance from a professional. These vast improvements in the effectiveness of treatments have made a career in psychiatry much more fulfilling and enjoyable. It is wonderful to see so many suffering people get well.

So what's the problem? Let's come back to the phrase "evidence-based medicine." Where do we get our evidence? Who are the people doing the research we are depending on to determine what is the best treatment for our patients? Most evidence is generated by pharmaceutical companies, whose goal is profit. If a drug is promising but can't be patented, it doesn't get studied. Once medications come off patent and "go generic," research on them basically comes to a screeching halt. What gets studied is what might lead to a profitable treatment, so we don't get much research clarifying mechanisms of specific illnesses, or what the boundaries are among various illnesses, except as it relates to a medication. We don't see much research comparing psychotherapy to medication or of the combination of therapy and medication. Psychotherapy research is harder to conduct, and certainly harder to patent, so most research in our field in on medications, and the simpler and more mechanical a psychotherapy is the more likely it is to be studied. The best medical research is generally the double blind, placebo-controlled study, where neither the researcher nor the patient know if they are taking a sugar pill or taking the medication being studied. The researchers are looking for evidence that people respond better to the medication than to the placebo at a level considered "statistically significant." But what if a small percentage of patients respond very well but most don't? Statistically, the medicine will look like a failure and research on it will stop. And there are medications that work great for a lot of people but make some people feel awful. Those medicines are more likely to make it to market. This research is expensive, and it takes the prospect of a big profit for companies to study a medication. That means medicines for rarer diseases or that work for a smaller subset of patients don't get studied. And what about the "placebo response," the improvements some people get just from believing they may be on a medication and participating in a study? No one stands to profit by figuring out how to maximize this response, so that doesn't get much study. In the US, there remains an unregulated market of so-called "nutritional supplements," and it is definitely a wild west of untested treatments and extravagant claims of cures. Not much evidence, but plenty of marketing. And research by the drug companies is selectively published, so we get distorted information of medications' effectiveness and risk.

And who pays for all this treatment? Insurance companies are more interested in low cost treatment than in effectiveness, and with people regularly changing insurance, they aren't much interested in prevention. And the newer treatments, both therapy and medications, are helping people with milder problems. Even people who don't have a diagnosable mental illness may benefit from treatment. As a society, should we pay for marital counseling, improving coping skills, or coaching for better success on the job? Should we be treating mild problems with attention and concentration with medications? What about medications to make someone more outgoing, or to affect personality in other ways? Where is the line? This brings us back to the questions about what is normal, about how much responsibility we take for treating or caring for those who aren't normal, and how tolerant we are of people who have emotions or behaviors different than the norm who may not want any treatment.

As we get access to better and better treatments to treat milder symptoms, these issues become increasingly pressing. In this lay ministry on mental health, I hope we have the opportunity to explore some of these questions in more detail. They are questions that our society is going to be grappling with for a long time.