Out Of The Shadows
The diagnosis and treatment of mental illness has garnered a huge amount of attention from politicians, health care advocates, lobbyists and even the President. Here, a local perspective on the national discussion of obstacles, causes and treatments
Liz McDermott was understandably upset. Her mental health was already fragile enough. But now she had just been in a traffic accident on Interstate 95. Not only was the collision her fault, but the cost of repairing her car was going to be more than she could afford. She was driving back to her place, shaken by all that had happened, when something extraordinary occurred. “I got what’s called a command hallucination,” she remembers. “It was a voice telling me what to do.”
And what that voice, which she could hear as clearly as if someone was sitting beside her, told her to do was to go home and take all the sleeping pills she had recently purchased, two full containers. Obligingly, Liz would ingest all 120 pills. That her therapist happened to call shortly afterward, and that Liz even picked up the phone, was the stuff of miracles. When he learned what she had done, he summoned help, and Liz was rushed to the emergency room.
That was twenty years ago, during the darkest days of the former Riverside resident’s struggles with what her doctors would determine to be schizoaffective disorder, a condition that includes elements of both bipolar disorder and schizophrenia. Now in her late fifties, Liz has her illness for the most part tamped down. By staying on her medications, regularly seeing her therapist and seeking help when her condition starts to get the better of her, she can live her life undaunted. A former dispatcher for the Greenwich Police Department, among other jobs, she’s on disability and shares an apartment in Norwalk with her cat, Mellow. She also volunteers as an advocate for others with mental illness and their families, speaking before educational gatherings and support groups.
“I move forward,” Liz says. “I try not to look back. Because if I were to look back, I would never get out of bed.”
In many ways that’s the same tack taken by those who are leading the fight to win acceptance, fair treatment and better care for the mentally ill, locally and around the country. Though much has been achieved over the past thirty years alone, particularly in terms of understanding psychiatric disease, much remains to be done. Conditions like depression, anxiety disorders, bipolar disorder and all other forms of mental illness are widespread. Even if we haven’t been directly affected ourselves, everyone knows someone, perhaps a number of people, whose life has been upended by such an ailment.
Yet for all that familiarity, mental illness continues to be shrouded in fear, shame and ignorance. It’s joked about in ways that would be reprehensible if the subject was cancer, for example. It’s demonized, in the form of The Dark Knight’s Joker, Tucson shooter Jared Lee Loughner’s wild-eyed police mug shot, and countless other representations in the mass media. And for many it’s hidden away in shame, which only heightens the problem for individuals, their families and society.
“It’s one of the last bastions of a civil rights movement, to simply have people recognize it as a chronic disease like any other chronic disease,” says Kate Mattias, executive director of the Connecticut chapter of the National Alliance on Mental Illness (NAMI). “We’re trying to get to a tipping point where people recognize that people with mental illness are their neighbors, their coworkers, their spouses and their children. They’re just like you and me. They are you and me.”
Certainly the statistics bear that out. Some 45.6 million Americans, one in every five adults, suffered from a diagnosable mental illness in 2011 (the most recent available data), according to the Substance Abuse and Mental Health Services Administration. (Connecticut falls right in line with the nation, with 19 percent of the population experiencing a mental illness in 2009 and 2010.) Young adults, those between ages eighteen and twenty-five, are at greatest risk with an affliction rate of nearly 30 percent. Women are more likely to be affected than men—23 percent versus 16 percent.
“It’s in practically every family; we know it is,” says Alan Barry, commissioner of the Greenwich Department of Social Services. “But people push it under the rug, put it in the closet. They don’t want to admit it because of the stigma. We need to shine a light on it and say it’s part of who we are, and begin to work on it. We’d be a lot better off.”
Opening the Dialogue
As happens so often in life, our greatest failures tend to be the best catalysts for change. The killings of children and school workers in Newtown last year brought horror and devastation, but in the aftermath came considerable soul searching about mental health and society’s contribution to the tragedy. In the wake of the shootings, folks began to open up about the corrosive effects of mental illness. Some heartrending stories emerged from last winter’s legislative hearings in Hartford. And while there was disagreement about certain issues, such as violence and gun control as they related to the mentally ill, people were at least talking. A conversation had begun.
State and federal funding for mental health programs, meanwhile, continues to be a sore point for those who work with the mentally ill. Still, progress has been made on the public policy front. The Affordable Care Act, also known as Obamacare, is far from perfect in the eyes of mental health proponents. Yet it will open the doors to psychiatric care for some 32 million Americans who previously lacked such coverage. And during his State of the Union address this year, President Obama’s clarion call for a long-term scientific project to map the workings of the human brain right down to the neurons, excited many and ignited hope that out of it will one day come remedies for even the most intractable mental conditions.
Today, medical research into mental illness is taking off like never before. Seemingly every week, scientists report new findings in genetics, brain imaging and potential therapies. The future looks to be one in which treating mental disorders will be tailored to the individual, homing in on specific variations in a person’s genes or the wiring one’s brain. “That holds out a lot of hope,” says NAMI’s Mattias, “because right now we’re still using a sledgehammer to put a very fine point on a nail.”
Indeed, current therapies are far from ideal. It takes weeks, often months, of trial and error to determine what drug, for instance, will drive one’s depression into remission. Often, none of the available offerings will work. But research is pointing to new approaches and treatments that scientists expect to be nothing less than revolutionary when they are finally realized. Says Dr. John H. Krystal, chairman of psychiatry at the Yale School of Medicine: “This is the most exciting time in the history of our field.”
Commonly, mental disorders reveal themselves full force just as their victims are stepping out into the world as young adults. Liz McDermott is a case in point. She had shown indications of psychiatric problems as a child, with thoughts of suicide and otherwise harming herself, though she never acted upon them. It was only after she graduated from Greenwich High School in the early seventies and was attending what was then Central Connecticut State College and later Katharine Gibbs secretarial school that her illness began to interfere with her daily life. At Central Connecticut, her sleep pattern reversed, and she found herself awake all night, then sleeping, and missing classes, during the day. A year or two later came her first suicide attempt.
“When I was about nineteen I started acting on the self-destructive thoughts by swallowing pills,” she remembers. “I would swallow aspirin, whatever I could get my hands on. I was going to Katharine Gibbs at that point. I wasn’t doing well and I think it was more a reaction to school and the pressure.”
Within a few years she had her job with the Greenwich police. But her symptoms were growing unmanageable—and unsettling. She’d have mood swings, punctuated by angry outbursts at coworkers. She lacked concentration. Her sleep problems continued. And she was unmotivated to socialize or to leave home for anything but work. There were also dissociative episodes in which she would blank out, having no awareness or memory of activities in which she was involved, from whole swaths of conversations to driving on the highway.
For years Liz would be dogged by flare-ups of her condition. And though she had one seven-year stretch without having to be hospitalized, during which she worked as a secretary and bank teller, sometimes even holding down a couple of jobs at once, life could be tough. “I grew a lot and I learned a lot,” she says philosophically. “I had successes and failures. One time I was thrown out of a house where I was living. I had two hours to leave with no place to go. I ended up staying with a friend for two weeks.”
In Greenwich, the Department of Social Services helps its clients with psychiatric needs to connect with healthcare services and to get assistance with matters like food stamps or housing. The department was also a driving force behind the creation of a mental health-provider group of organizations and agencies from Greenwich and Stamford—Greenwich Hospital, Family Centers, the state’s Franklin S. Dubois Center, among others—to help coordinate care for clients and to follow up on their progress, to prevent folks from falling through the cracks.
Mental illness is particularly tough on families, each of them struggling with its own set of challenges. “If you have a family member who is not seeing their need for treatment and is breaking furniture and is irritable or aggressive, you can have a family that has to kick a loved one out of the house,” says Patsy Schumacher, a case worker for Greenwich Social Services. “You can have a family where the parents are not ready to kick a loved one out but other siblings are being affected. You have situations in which you have substance abuse, where the substance abuser is stealing to support their habit.
“Sometimes people have to leave their professions to caretake for someone who is struggling. You can have situations where parents disagree on how to handle difficulties with their child, so now they’re at odds. You see families in denial; they’ll deny the presence of the illness and sort of collude with it. That happens particularly in cases of substance abuse; they’ll protect against the world seeing that there’s a problem. There are all different ways that a family could be impacted, but they’re typically impacted in big ways.”
One invaluable resource for families coping with mental illness is NAMI, which has a local affiliate based in Stamford. In addition to its advocacy work, the nonprofit runs support groups and educational programs. Last year’s inaugural Family to Family classes at Greenwich Hospital, which cover the basics of understanding and coping with mental illness, drew a respectable initial gathering of thirty people, says Peter Case, past president of the local chapter. This year’s program, held at Greenwich Town Hall, drew thirty-seven attendees. “I think folks in Greenwich are becoming a little more open to coming out and talking about a mental illness problem in the family,” he says.
The truth is that mental disorders are different than most diseases. “If someone has a heart attack, there are tests,” says Dr. Jeremy Barowsky, a psychiatrist and director of addiction medicine at Greenwich Hospital. “There are EKG changes. You can see blood levels change. Mental illness is much more insidious. We don’t have a blood level for it. And because we can’t quantify it or necessarily even see it, people are less willing to accept it as real.”
Other conditions tend to spare the essential personality of their victims. But mental illness affects people in fundamental, oftentimes unnerving, ways. “It strikes at the core of a person’s identity,” says Dr. Barowsky. “When someone has a broken arm, they can look at it and say, ‘I’m not broken, my arm is broken.’ Mental illness involves personality, emotions, feelings. It’s really hard for people to separate themselves from the illness.”
Similarly, it’s difficult for others to understand what someone with a psychiatric condition is experiencing. Even empathetic, well-meaning individuals are often at a loss for how to behave when confronted with someone suffering from such an ailment. “When I caught pneumonia, people came out of the woodwork to help me,” says Liz McDermott. “People came over and grocery shopped and just went out of their way for me. But if it involves a mental health issue, they scatter. They don’t know how to handle it.”
That kind of response, or lack of response, sets off a process of denial and deception among the afflicted that ripples outward. Linda Autore, president of Laurel House, which provides housing and programs for the mentally ill in Stamford, remembers her own family’s experience when she was a child. “My mother was schizophrenic and had a variety of different diagnoses when I was growing up,” she says. “I had a wonderful father who mortgaged our house and devoted all his resources to her. But as open-minded and understanding as he was, we would always say when she was gone for long periods in the hospital that she was at my grandmother’s, that she was helping my grandmother. He was worried about me and my sister and what would people think and would they treat us differently because they didn’t understand.”
Physiology & Treatment
Like other ailments, mental conditions tend to have physiological roots. The problem is that whatever has gone awry has done so in the largely uncharted regions of our being—in genes, biochemical transactions and neural pathways of the brain that science is just beginning to understand.
Heredity no doubt plays a part in many mental disorders. But that doesn’t mean the children of someone with depression or schizophrenia, for instance, will necessarily be afflicted as well. As with many other diseases, it’s a combination of problem genes, rather than just one by itself, working in concert with outside factors to cause psychiatric conditions to kick in. Stress, substance abuse, lack of sleep and poor nourishment are just some of the triggers.
Nor are genes the only culprit. Chemical imbalances in the brain’s messaging system, structural abnormalities of the brain by defect or injury; prenatal or childhood exposure to viruses or bacteria; emotional trauma; and stressful life experiences have all been implicated in throwing a wrench into one’s psychic machinery.
Not everyone, in fact, agrees that biology is behind every case of mental illness. For some victims, maybe it has more to do with quirks of personality than anything science can determine. And rather than hunting for a variant gene or an imbalance of some chemical, skeptics say, perhaps researchers should be looking harder at environmental, behavioral and social influences. Maybe childhood abuse is to blame, for example, or a life of poverty, or any number of stressors.
As it stands, doctors have precious few tools for combating psychiatric disease. Diagnostic methods—rule out other conditions, observe the patient’s behavior and ask questions about their symptoms—have remained much the same for decades. And though current modes of treatment do help many patients, those victories can be hard won. It took twenty-five years and long stretches on several different drugs, for example, for Liz McDermott’s doctors to finally get her condition under control, with the availability of the antipsychotic drug Risperdal. And she is better off than many people. Only about half of those on medication see improvement in their conditions. And for most mental disorders, the recurrence rate is high.
Treatment, too, has its risks. With medications come potentially onerous side effects. Those taking antidepressants often suffer from debilitating headaches, insomnia,
stomach aches and sexual dysfunction. Some drugs also carry warnings about increased thoughts of suicide. Antipsychotic drugs and mood stabilizers, for their part, can lead to weight gain and illnesses like diabetes.
Psychotherapy, especially when used in conjunction with medication, has proven beneficial. One of the more successful methods is cognitive behavioral therapy, a goal-driven approach in which patients work with a counselor to consciously challenge and change their self-perception and the behaviors that are disrupting their lives. Depression, anxiety disorders, eating disorders and other conditions have all been eased by revamping one’s thought patterns.
Peer-support programs, well known for their role in helping those with addiction to alcohol or drugs, also work, though insurance carriers seldom cover them. Nor should one underestimate the value of exercise, good sleep habits and eating right.
For particularly tough cases, doctors may recommend brain stimulation therapy. Electroconvulsive therapy (ECT), which has been around for seventy-five years, is the best known of such procedures. It’s mainly used for major depression, though it’s also been a resort for patients with schizophrenia or bipolar disorder. Basically, ECT involves delivering a brief course of electricity to the brain, through electrodes placed on the head, to induce a controlled seizure. Doctors are uncertain why it works, though it’s believed to stimulate biochemical changes in the brain and boost the functioning of neurons. A certain degree of memory loss is common after the procedure. Nor is ECT without controversy. Some credit it with saving lives while others allege that it fundamentally alters one’s brain, personality and ability to think.
Other brain stimulation approaches, still largely experimental, also have potential. Among them are transcranial direct current stimulation, a noninvasive procedure that targets the front of the brain with electromagnetic pulses; vagus nerve stimulation, which involves implanting a device under the skin of the neck to stimulate nerves that connect the brain with the heart and others organs; and deep brain stimulation, in which electrodes are surgically implanted within the brain and wired to a generator placed in one’s chest to issue continuous pulses of electrical stimulation.
Researchers are further optimistic about what is known as cognitive remediation therapy, which is thought to help rewire the brain of those suffering from schizophrenia. Using video games, patients are challenged to perform progressively more difficult tasks and gradually begin to regain basic functions like attention, learning, memory and problem solving.
Advances in technology are opening entirely new vistas of knowledge, which scientists expect will produce better methods of diagnosis and treatment. The Human Genome Project, the $3 billion mission to map the DNA of human beings that was completed in 2003, has led to myriad breakthroughs in medical research as well as innovations in treating diseases like cancer. Now it’s proving its worth for researchers investigating mental illness.
Cracking the Genetic Code
“One of the consequences of the emergence of genetics is that it’s beginning to point to some connections that we didn’t appreciate when we were just looking at signs and symptoms that people have,” says Dr. Krystal, of the Yale School of Medicine.
Earlier this year, an international consortium of researchers discovered that those suffering from schizophrenia, bipolar disorder, autism, major depression and attention deficit hyperactivity disorder shared variations in four regions of their genetic code. There was no smoking gun; the variants in themselves pose little risk to one’s developing mental illness. But the study, which analyzed genetic information from more than 60,000 people, challenges conventional thinking about psychiatric disease. Perhaps we have been wrong to consider those five conditions as being so distinct from one another. Despite outward appearances, maybe they fall under the same disorder, with the same underlying cause.
Genetics has upended much of what we once believed in other fields of study, such as evolution. Long-accepted classifications and assumptions based on what scientists knew about fossils and living creatures have been toppled by the evidence of DNA. Our ever-expanding knowledge of the genome is likewise starting to rattle coveted notions about mental illness. Or as Dr. Krystal puts it: “Genetics research is blowing it up.”
What lies ahead for the treatment of mental disorders is tantalizing, though still nebulous. Psychiatric illness seems destined to one day be diagnosed more like other diseases. Researchers have been looking into blood tests, for example, which might show biological indications of a particular disorder. Though largely met with skepticism, at least two biomarker tests, MDDScore for depression and VeriPsych for schizophrenia, are already being marketed to psychiatrists. Among other problems, the tests are less than definitive. The results, critics say, could be attributed to other factors, such as another medical issue or medications one might be taking.
It’s also possible that in a decade or two, psychiatric patients will routinely take a blood test to determine their genetics. In the emerging field known as pharmacogenomics, treatment is tailored to one’s DNA. “The idea is that if we can understand genetically an individual’s makeup, then we can customize a treatment vis-à-vis medications and other biological modalities,” says Greenwich Hospital’s Dr. Barowsky. “That’s the future. It won’t just be treating depression. It will be treating depression in Bob Smith who has a certain genetic makeup.”
Brain imaging offers similar hope. The Human Connectome Project, a five-year study funded by the National Institutes of Health, is just beginning to churn out high-tech scans and other data about the brain’s circuitry and its relationship to behavior. Included in their arsenal, investigators in the United States and Europe are employing a technique known as diffusion spectrum imaging to boost traditional magnetic resonance technology. In short, scientists are tracking the diffusion of water molecules in the brain to help uncover neural pathways.
“It’s really too early to tell, but maybe one day before you start your treatment, I’m going to ask you to have an MRI brain scan to tell us about the activity of your particular brain circuits,” says Dr. Krystal. “And maybe then we’ll choose a treatment that’s targeted for that type of circuit dysfunction. I don’t see that in ten years. I’m not confident we’ll be there in twenty years. But it is certainly the way the field seems to be going, which is to increasingly focus the selection of treatment to restore the function of the underlying biology. That’s the way we develop new treatments for cancer. That’s the way we develop new treatments for diabetes. And that’s going to be the way we develop new treatments for psychiatric disorder.”
Pharmaceutical companies are hoping within a few years to start rolling out the first fast-acting antidepressants. Current therapies like Prozac and Zoloft, which target the neurotransmitter serotonin, take an average of seven weeks to beat back depression. But drugs like ketamine, scopolamine and GLYX-13 go after a different neurotransmitter, glutamate, with good results in just hours and days. Side effects are a concern—ketamine, for example, has been known to cause psychotic reactions—so researchers press on. When and if such medications do win FDA approval, they stand to be game changers, indeed life savers.
“If we could find a rapid-acting antidepressant that is safe and that we know how to use, it could do things like prevent the hospitalization of somebody who was very seriously depressed,” says Dr. Krystal. “Maybe it would help people who were suicidal to have those feelings go away relatively quickly. Maybe it would shorten the time that some people would spend in the hospital.”
Change is already in the air. Connecticut’s Department of Mental Health and Addiction Services, for example, is a proponent of the recovery model for mental health care. With treatment, it is understood, people can manage their disease and reclaim their lives. Individuals who thirty or forty years ago might have languished at home are now living on their own and returning to school and work.
Nonprofits like Pathways in Greenwich and Laurel House in Stamford, for their part, help folks with housing and other programs. “We’ve seen a lot of success,” says Florence Griffin, executive director of Pathways, of the thirty-eight residents her group provides apartments for in town. “It may not be what they dreamed when they were eighteen, but it’s a life. This is the life they have and they make the best of it.”
To have the greatest impact, advocates say, mental illness must emerge from the shadows. That means better education across the board, of individuals, families and communities. It also means integrating mental health into the health care system and society as a whole. More basic screening—just some simple questions from primary care physicians, teachers or athletic coaches—could save lives. As would better follow-up by health care providers and social services agencies.
Individuals, too, can effect change. A good starting point is to simply set aside one’s fears and prejudices and accept others for the human beings that they are. Liz McDermott, for one, admits that her condition has cost her friendships over the years, though she refuses to dwell on it. “If I were to lose sleep over every person who’s stopped talking to me, I would never sleep at all,” she says. “If you don’t want anything to do with me, then too bad. You’re missing out on a good person, you really are.”