A SMART+STRONG PUBLICATION SPRING 2011 SANEMAG.COM $3.99
Seeing The Light How therapy helped Terrie Williams emerge from the darkness of clinical depression
The truth behind eight mental health myths
Whatâ€™s In Your Genes?
The key to more effective treatments for mental wellness may lie in our genes
T A L K I N G
FROM THE EDITOR
(COVER) BILL WADMAN; (EVANS) COURTESY OF DAVID EVANS
HEN I WAS FIRST DIAG nosed with a mental dis order in 1984, the Prozac revolution was still a few years away, and the range of options for a severely depressed 16year old living in a small town was limited. During the next 22 years, I received vari ous diagnoses and tried new drugs almost as frequently as many people buy new sneakers. Through it all, consistent and trustworthy information about mental health was so hard to find. And in the end, that’s what filled me with frustration. In 2006, amidst the most debilitating depression I’d ever experienced, some thing shifted, and my frustration turned to action. I realized I’d been giving away my power to others. Until then, I dutifully read the pamphlets and fact sheets I was given about my drugs, but I never really took charge of my mental health. This time, though, I was finally fed up enough to do something about it. Despite the fact that my depression was still so heavy that I didn’t want to leave the house, I began scouring medical libraries and spending hours online. I also made a revolutionary decision for me: I started telling just about everyone I knew about my struggles and triumphs over mental illness. In short, I took my power back, and the freedom was exhilarating. I realized fear of stigma had led me to keep my struggles with mental health a secret. It also made me merely a compliant patient rather than an active partner in my health care. Stigma also kept me from asking for the kind of support I needed to
REGAN HOFMANN EDITORIAL DIRECTOR
WILLETTE FRANCIS ASSISTANT EDITOR
KATE FERGUSON ORIOL R. GUTIERREZ JR. TIM HORN LAURA WHITEHORN CRISTINA GONZÁLEZ
MANAGING EDITOR EDITOR
live—and live well—with a serious mental illness. Since being open about my diag nosis of bipolar disorder, I have been able to find the kind of support that has helped keep serious symptoms at bay for years. My journey was part of the inspiration for Sane, Smart + Strong’s new magazine on a mission…to help people living with mental illness take charge of their mental health and live happier, richer and more stable lives. The articles in this issue offer practical advice for better living and investigate the frontiers of mental health research. Our two feature stories document the inspiring tales of two mental health heroes: Terrie Williams and Stephen Puibello. Sane is the kind of magazine I wish I’d found in the waiting room of the very first therapist I saw nearly 30 years ago. Now Sane is in your hands. We hope you find it inspirational and helpful and that you’ll pass it on. And be sure to visit us at sanemag.com for even more content and to connect to others who are over coming mental health issues.
MENTAL HEALTH: THE BASICS
MENTAL HEALTH IN AMERICA
The seven most common forms of mental illness that affect Americans Statistics about our nation’s state of well-being
MIND OVER MATTER
Famous examples of success despite mental illness
4 DECONSTRUCTING MYTHS ABOUT MENTAL HEALTH Separating fact from fiction
5 BRAIN ON FIRE
Is inflammation at the root of bipolar disorder?
6 GETTING THE HELP YOU NEED
Key steps to achieving your optimal mental health
SERIOUS SIGNS OF TROUBLE How to know if and when it’s time to seek professional help
Alternative treatments for depression and anxiety
8 LADY SINGS THE BLUES
Terrie Williams is breaking the silence and getting people to talk about depression
10 FIELD OF GENES
Unlocking the future of mental illness research
12 POSITIVE THOUGHTS
Stephen A. Puibello advocates for those living with mental illness and HIV
SMART + STRONG IAN E. ANDERSON PRESIDENT
Issue No. 1. Copyright © 2011 CDM Publishing, LLC. All rights reserved. No part of this publication may be reproduced, stored in any retrieval system or transmitted, in any form by any means, electronic, mechanical, photocopying, recording or otherwise without written permission of the publisher. Send feedback on this issue to email@example.com or to Sane, c/o Smart + Strong, 462 Seventh Ave., 19th Floor, New York, New York 10018.
DIRECTOR, INFORMATION TECHNOLOGY
WEB PRODUCER AND DEVELOPER
EXECUTIVE VICE PRESIDENT AND PUBLISHER
MANAGER, ADVERTISING SALES
ART PRODUCTION MANAGER
ONLINE ADVERTISING MANAGER
VIDEO PRODUCER AND DEVELOPER
CDM PUBLISHING, LLC JEREMY GRAYZEL, CEO SALES OFFICE 212.242.2163 (TEL) 212.675.8505 (FAX) SALES@SANEMAG.COM
ARNIE LEWIS, KABRINA MCLAUGHLIN CIRCULATION ASSISTANTS
SPRING 2011 SANE 1
Mood and anxiety disorders are serious medical illnesses. Here, an explanation of the seven most common forms of mental illness that affect Americans. By Tim Horn
EN TAL I LLN ESS IS A N equal-opportunity disabler that can be broken into two general categories for most people: mood and anxiety disorders. Mental illness can strike at any age, regardless of your gender, race or income level. It is not a result of personal weakness, lower intelligence, lack of character or poor upbringing. Mood and
2 SANE SPRING 2011
anxiety disorders are medical conditions that, fortunately, can be treated. The causes of mental illness are varied and include long lists of genetic, chemical, environmental and psychological factors. Often, though, mental illness is the result of a combination of causes. MOOD DISORDERS
It’s perfectly normal to experience bouts
Mental Health: The Basics
of sadness, loneliness or moodiness. They are natural and healthy responses to traumatic events—such as the loss of a job or the death of a loved one—or other stressful situations, whether short-lived and traumatic or long-reaching and persistent. By comparison, mood disorders are serious, pervasive conditions that affect both the mind and the body. Major depression is one of the most common mood disorders, affecting nearly 15 million American adults, or nearly 5 percent of the U.S. population. It affects all races, ethnicities and income levels. Not only is it a leading cause of disability in the United States among people ages 15 to 44, but it has also been linked to a number of other serious illnesses. Heart attacks, for example, are four times more likely to occur among those with major depression than those without a history of the mental illness. More than the occasional blues, major depression is marked by periods of intense sadness, feelings of guilt and worthlessness, trouble concentrating, sleep and appetite problems and lack of interest in things a person usually finds enjoyable. To be diagnosed with major depression, a person must have several symptoms occurring on most days for at least two weeks. Mild depression, technically known as dysthymia, affects another 3 million Americans. Whereas bouts of major depression can come and go, dysthymia is often chronic and unrelenting—sometimes for years. Also under the umbrella of mood-related illnesses is bipolar disorder, affecting roughly 6 million Americans. It usually involves intense periods of excitability, or mania, followed by periods of major depression. Manic episodes, lasting days or sometimes months, can include risktaking activities, increased energy and activity, euphoria and paranoia. The depressive episodes that frequently follow can include many or all of the symptoms seen in major depression. There is also seasonal affective disorder, or SAD. As its name suggests, this mood disorder is generally associated with increased symptoms of depression
during the winter months, when there is less natural light to stimulate the central nervous system.
Anxiety may not be pleasant, but it’s typically a healthy response to life’s stresses. However, when anxiety becomes excessive—manifested in unusually strong and persistent feelings of fear and dread—it can become a disabling disorder. Generalized anxiety disorder (GAD) is the most common form of anxiety disorder among adults, affecting nearly 7 million Americans. It is marked by persistent worry and anxiety about everyday activities. In some people, GAD is fairly mild and does not interfere with daily living. In others, the condition can be severe and interfere with work, school and family as well as social responsibilities. People with panic disorder often experience symptoms associated with GAD, along with panic attacks—feelings of being overwhelmed with terror. About 6 million Americans suffer from panic disorder, nearly a third of whom will go on to develop a phobia in efforts to avoid stressors, such as the agoraphobe who never leaves the house in order to avoid public places. Unhealthy anxiety can also manifest as recurrent negative thoughts (obsessions) and repetitive behaviors (compulsions). Combined, they can lead to obsessivecompulsive disorder (OCD). Compulsions such as ritualized and incessant counting, cleaning and hand washing are often performed to prevent or reverse obsessive thoughts that can lead to panic attacks. It’s estimated that more than 2 million Americans struggle with OCD. Finally there is post-traumatic stress disorder (PTSD), a debilitating compilation of anxiety-related symptoms, including persistent frightening thoughts and panic. It affects nearly 8 million people in the United States. Typically thought of as a lingering psychological effect of war or physically violent acts, PTSD can follow any traumatic or extremely stressful event. For detailed information on these and other mental health issues, go to sanemag.com.
Mental Health in America Some telling statistics about our nation’s state of well-being More than a quarter of Americans will suffer from a psychological or substance abuse disorder this year. l
About 1 in 4 Americans will have a diagnosable mental illness in his or her lifetime. l
More than 5 percent of Americans have a psychological disorder that interferes with daily functioning, and 2.6 percent have a severe and persistent psychological disorder.
depression, but men are more likely to attempt suicide. Fewer than half of those who need treatment for mental illness actually get the help, and most treatment received does not meet expert guidelines. l
Depression and other psychological disorders increase the likelihood of other serious medical conditions including heart disease. l
Left untreated, depression is as costly to the U.S. economy as heart disease. l
Rates of mental illness are about the same for adults as for children and teens. l
Women are more likely than men to be diagnosed with l
Mental disorders lead to nearly $200 billion in lost wages each year in the United States, both from unemployment and the loss of other employment opportunities and career advancement. l
The aggregate cost of mental disorders in the 1990s was about 2.5 percent of the U.S. gross domestic product. l
Mental health issues are the second leading cause of U.S. workplace absenteeism. l
Sales of anti-psychotic drugs for psychological issues topped $25 billion in 2008. l
Approximately 170 million antidepressant prescriptions were filled in 2005. –DAVID EVANS l
Mind Over Matter
Famous examples of success despite mental illness
Many people living with mental illness have made major contributions to society. Some of the most prominent include:
Ludwig van Beethoven (pictured), who overcame hearing loss and bipolar disorder to become a world renowned classical musician and composer. Abraham Lincoln, who led the country through the Civil War as the 16th president of the United States despite severe depression. Tennessee Williams, the Pulitzer Prize and Tony Award–winning playwright of A Streetcar Named Desire, who wrote about his clinical depression in his memoirs. Oscar winner Richard Dreyfuss, U.K. singer Robbie Williams and actress Carrie Fisher (a.k.a. Princess Leia), who were among the celebrities featured in a documentary about people living with bipolar disorder, The Secret Life of the Manic Depressive. There are countless more examples—all of whom show that mental illness doesn’t have to keep you down. —CRISTINA GONZÁLEZ
SPRING 2011 SANE 3
motivation and persistence to work hard and persevere. MYTH: There are no effective treatments for mental illness. TRUTH: This couldn’t be further from the truth. Depending on the disorder, between 70 and 90 percent of people will see reduced symptoms and improved quality of life when they receive appropriate and effective treatment for mental health issues. MYTH: If I take antidepressants I’ll feel like an emotional zombie. TRUTH: Not all meds are alike. Some people do feel less alert and clear-headed on some medications, but most of the time this is not the case. Sometimes you have to try different drugs to find the one that works best with the fewest side effects.
Myths and misinformation about mental illness can lead to stigma that keeps people from seeking insight and support regarding their mental health. The biggest truth is that no one needs to suffer the debilitating effects of mental illness. Help and happiness are possible—no matter how dark the clouds seem. By David Evans MYTH: Psychological disorders are different from other medical problems. TRUTH: The experts are still arguing nature versus nurture, but most concede there’s a genetic and biological root for many psychological disorders. Environment, upbringing and life circumstances are linked to mental illness, but these same factors also strongly predict whether a person will develop cardiovascular disease, diabetes and other conditions. MYTH: Having a psychological disorder means I’m weak. TRUTH: Not necessarily. People with mental 4 SANE SPRING 2011
disorders often display remarkable courage and strength—maintaining jobs and raising families despite crushing anxiety, depression and other cerebral challenges. It takes courage to admit you’re suffering from a problem that carries such stigma. In fact, people who seek to overcome their mental illness are quite strong and brave. MYTH: If I have a mental illness, I won’t be able to pursue my career or other goals. TRUTH: If you’ve been successfully treated, and you respect your limitations, you should be able to accomplish almost anything you want to—provided you have the
MYTH: If I just do enough exercise or yoga, get enough sun or eat the right diet, my psychological problems will disappear. TRUTH: These things can help you recover from mood and anxiety disorders, but they often aren’t enough—by themselves—to pull someone out of a serious depression, resolve problems with panic or compulsive behavior, or keep someone with bipolar disorder from having a manic or depressive episode. MYTH: If I tell people I have a psychological disorder, they will treat me differently—or even reject me. TRUTH: Probably not as many as you think. There’s no way around it—mental illness carries a huge stigma, but that’s changing fast as more people “come out” about their struggles. The truth is some people, whether from ignorance or prejudice, will treat you differently or reject you if you tell them what you’re going through. The trick is knowing whom to tell and when to tell them.
GETTY IMAGES/MARK HOOPER
Deconstructing Myths About Mental Health
MYTH: If I take meds I’ll lose my ability to function sexually. TRUTH: Studies show that most people don’t have this problem. However, some meds are more prone to cause this side effect than others. Your doctor should take your concerns about your sexual performance seriously and help you find a medication that doesn’t impede your sexual life. Ask your doctor if drugs like Viagra and Cialis can help you.
Brain on Fire
Is inflammation at the root of bipolar disorder? By David Evans
GETTY IMAGES/CAROL & MIKE WERNER
NFLAMMATION IS OUR BODY’S WAY of responding to injury or threat. In the simplest terms, inflammation works like this: If our cells are damaged or overworked, or if we are infected with a germ, then our bodies release microscopic proteins and amino acids that alert other cells to the problem. There are dozens—probably even hundreds—of inflammatory proteins, and scientists are finding new ones every day. When too many of them flood our system over a sustained period of time, it’s referred to as chronic inflammation. This can cause extensive tissue damage in the brain, clog up our arteries and ultimately provide an ideal environment for cancers to develop. Similarly, new scientific evidence shows that brain cell inflammation might be at the root of mental illness. Several studies have found that microscopic structures associated with cellular inflammation in the brain were more likely to be present in the cerebrospinal fluid of people with schizophrenia
than people without the disorder. Such findings inspired a research team led by Lennart Wetterberg, MD, PhD, from the Karolinska Institute in Stockholm, to explore whether these microstructures would be found in people with bipolar disorder. To test this hunch, the researchers tapped the spinal fluid of 31 people with bipolar I (which is associated with severe mania), 25 people with bipolar II (which is associated with a milder form of mania) and 20 people without bipolar disorder. Ultimately, Wetterberg and his colleagues found the inflammatory microstructures in 45 of the people with bipolar disorder. These people were more likely to have bipolar I and to have experienced more severe manic episodes. In other words, the more severe the psychological disease, the more likely a person was to have these proteins. While the study of inflammation and mental illness is in its infancy, the evidence that inflammation plays a central role in psych disorders is gathering rapidly and
coming in from all sides. In fact, as a number of recent studies have found, the success of psych meds might be linked to their ability to reduce inflammation in the brain and encourage the formation of new healthy brain cells rather than their impact on specific neurotransmitters, such as serotonin.
e haven’t yet identified what causes inflammation in the first place—inflammation is l i kely spur red on by substances such as tobacco smoke and sugar as well as excess fat in the gut. In fact, our own stress hormones can also set off a chain reaction of inflammation that ultimately damages healthy cells. We also don’t know why some people seem more vulnerable to inflammation than others. It will probably take decades to finally understand the connection between inflammation and bipolar disorder. Inflammation is now implicated as the cause of myriad health concerns, ranging from cancer to cardiovascular disease— even aging itself. If it turns out that inflammation is indeed at the root of some mental illnesses, and that we can easily and consistently measure it, this knowledge could radically transform both the diagnosis and the treatment of psychological disorders. SPRING 2011 SANE 5
CONSIDER PSYCHOTHERAPY. Psychotherapy,
or talk therapy, is widely regarded as a tried-and-true treatment. It can be hard work, and your feelings of sadness or distress might seem to get worse before they get better. It’s important to work with a specialist whom you feel comfortable with—it’s not uncommon for people to try different therapists. Consider group psychotherapy, which is a great way to learn from others, receive validation and feel less lonely.
If your mental anguish is caused by more than just a bad day or an emotional rough patch resulting from a specific life event, consider seeking the help of a pro. By David Evans
EF T U N T REAT ED, MEN TAL illness can result in profound consequences. Debilitating symptoms can lead to unemployment, substance abuse, homelessness, even suicide. The following are key steps to achieving your optimal mental health: SEE YOUR DOCTOR. Schedule a comprehen-
sive physical with your regular doctor— and be sure to tell him or her about any emotional difficulties you’re experiencing. Many physical conditions and treatments can cause depression and anxiety. If all 6 SANE SPRING 2011
checks out physically but you’re still suffering mentally, you can discuss next steps, including a referral to a mental health specialist. FIND A PROVIDER. A referral from your pri-
mary doctor isn’t the only way to connect with a mental health expert. Ask friends and family members for suggestions, especially if you know they’ve had good experiences themselves. National mental health organizations such as SAMHSA (mentalhealth.samhsa.gov) and NAMI (nami.org) can also provide referrals.
PAYING FOR CARE. Many insurance companies allow for mental illness treatment and care, but there may be limits—premiums or co-payments for psychiatric visits and prescriptions, and limited coverage for psychotherapy. If you lack adequate health insurance—both Medicare and Medicaid also cover mental health services—you still have options. Many psychotherapists, for example, will accept sliding scale payments. You can probably find service agencies or organizations that provide psychotherapy at discount rates. There’s no one right treatment for everybody. A combination of different approaches, sometimes through a process of trial and error, is often needed. Go to sanemag.com for more information about mental health services.
GETTY IMAGES/JON BERKELEY
Getting the Help You Need
CONSIDER MEDICATIONS. Psychotherapeutic drugs have helped many people manage mood and anxiety disorders, including people with advanced illness unlikely to benefit from psychotherapy by itself. Medications can only be prescribed by a licensed medical provider—either a doctor or a psychiatrist. However, psychologists and psychotherapists can work closely with other medical providers to ensure that you’re being prescribed the best treatment. You should be well informed about the medications you’ve been prescribed, including the timeframe in which they are expected to work, potential side effects, correct dosages and what to do if you experience problems. Also, to avoid the risk of drug interactions, tell your doctor about all medications you’re taking.
Serious Signs of Trouble How to know if—and when—it’s time to seek professional help for mental health issues. By Tim Horn
(VITAMINS) ISTOCKPHOTO.COM/MA-K; (MAN) ISTOCKPHOTO.COM/BRAVOBRAVO
OU ALWAYS WAKE UP AT 3 a.m., but you’re tired all the time. Your favorite television program seems pointless now. You bit your best friend’s head off for the second time in two weeks over a misunderstanding. You haven’t even started a report at work that’s due in two days. Are you just really stressed out, or are these things signs of a bigger problem? The answer, though perhaps not very satisfying, is that it depends. If all this has been occurring under the cloud of an impending divorce, for example, then your reaction to stress may be relatively normal. Having a trusted person you can talk to will probably help you weather this kind of emotional storm. You can also take steps to help manage the stress—try meditation or give up caffeine for a while—and you’ll probably be OK once the stressful situation resolves. If, however, everything else is going swimmingly in your life, but you still feel like a dead person reanimated into a living body, then turning to a professional for help is probably a good idea.
Psychology isn’t as exact a science as biology or chemistry—at least not yet— but there are clusters of symptoms that commonly point to certain psychological problems. To help determine whether you might be dealing with a mental health issue, consider the questions a professional might ask you: Has your sleep, appetite or energy level changed?
l Are you feeling unusually guilty and down on yourself—or on the flip side, overly confident and exuberant? l Are you more irritable and impatient? Are you thinking about painful memories over and over again?
Has your drinking or drug use increased?
l Do you feel persistent anxiety, or find yourself panicking when you are not actually in danger?
Remember, each mental health disorder has specific symptoms. In fact, psychological disorders are diagnosed based on the number, severity and persistence of specific symptoms. A diagnosis should come from a trained mental health professional, not from yourself, your spouse or your mother-in-law. Understand that if you do seek help, you won’t be forced to do anything against your will—unless you are an immediate danger to yourself or someone else. Most providers will recommend counseling, medication and/or lifestyle changes. One vital point: If you have thoughts of harming yourself or someone else, it is critical to seek professional help right away. To speak with a trained crisis counselor, call 1.800.SUICIDE (1.800.784.2433) or 1.800.273.TALK (1.800.273.8255).
Going Natural Considering alternative treatments for depression and anxiety The effectiveness of some antidepressant drugs has recently been called into question by scientists. As a result, many people are exploring non-pharmaceutical solutions to treat mild mental health disorders. But do complementary and alternative medicines work? Data show that some naturally occurring fats found in fish oil can trigger an antidepressant response. Some physical activities like rigorous workouts and cardiovascular exercise (and to a lesser extent yoga and meditation) have also been shown to counter depression. A disadvantage of health supplements is their cost, which can add up and usually isn’t covered by health insurance. There is also the issue of safety and quality control. North America doesn’t regulate health supplement manufacturing, so you may not always get what’s listed on the bottle. Finally, even natural supplements can have side effects (some can be serious) and the supplements can interfere with your drug regimen, so tell your doctor if you’re considering alternative options. —DAVID EVANS
SPRING 2011 SANE 7
Lady Sings the Blues
As the high-profile president and owner of her same-named PR firm, Terrie Williams routinely handled the public and professional lives of some of the biggest names in entertainment. Then one day her mask slipped. She was forced to face the pain sheâ€™d been hiding.
CREDIT TK HERE
By Kate Ferguson
T A L K I N G
NE DAY IN 2004, T ER R IE Williams descended into the depths. She went home, drew the blinds, lay down, curled herself into a fetal position and pulled the sheet over her head. Then she dozed off into the darkness. That’s where f riends found her—three days later. Alarmed, they booked an appointment for her with a therapist, accompanied her there and provided moral support so she’d continue going. “I was diagnosed with clinical depression,” Williams says simply. The clinical depression Williams experienced was the blackest “blues” she’d ever known. Although she could function, the condition negatively affected how she felt, thought and acted. On the outside, she was perceived as a tower of strength; on the inside, she was dying. She’d feel sad and hopeless for prolonged periods of time, sunk in despair and unable to put her feelings into words. But Williams was not alone. At any given time, almost 5 percent of the U.S. population—or 15 million people—suffer from major depression, according to the National Institute of Mental Health (NIMH). “Everyone wears the mask and feels that to have challenges is a sign of weakness,” Williams says. “Everyone inherits the unresolved pain and trauma of their parents, so you have very wounded people who are raising children. And they’re unable to parent [properly] because they haven’t dealt with their issues. All that impacts the kids.” We are unaware that these aspects of depression affect us on a regular basis, Williams says. And when we don’t speak about, address and release them, they essentially go unrecognized. When she started therapy, Williams reflected on the warning breezes that had whipped red flags around her 30 years before while she was still in graduate school. Although she excelled in her studies, she slept all the time. Even when she became a licensed clinical social worker who knew about depression, she didn’t connect her situation with that mental condition. What she recalls is being dogged by a nagging feeling that something was wrong. Then therapy named her problem. In the aftermath of Williams’s therapy,
once the darkness lifted and she could see the light again, she began speaking about her experience with clinical depression. While on a C-Span panel, she discussed misperceptions about the condition and explained that sufferers often cope by selfmedicating with food, drugs or sex. After Williams spoke, Diane Weathers, then editor-in-chief of Essence magazine, approached her. She asked Williams to share her story in the publication. “That’s when the floodgates opened,” Williams says. “People deluged the magazine with thousands of letters. The reaction was stunning and overwhelming.” As the mail poured in, the reaction sparked a fire in Williams. She began working on a book, Black Pain: It Just Looks Like We’re Not Hurting, a collection of stories
the events also inspired the Ad Council, America’s leading producer of public service campaigns, to team with the national government agency Substance Abuse and Mental Health Services Administration (SAMHSA) to launch a mental health campaign targeting young adults in the AfricanAmerican community. But Williams also hopes to destigmatize depression among all groups. “People [in general] experience extraordinary pressures every single day,” she says. “So how do they manage that?” In answer to her own question, Williams is working on another mental health campaign with BET’s Centric, a 24-hour cable entertainment network launched in 2009. This campaign will address different population groups, including young people
“WE HAVE TO SHARE OUR STORIES WITH EACH OTHER SO PEOPLE DON’T FEEL LIKE THEY’RE STANDING ON THE LEDGE ALONE.” about people experiencing depression in the African-American community. Once published, the book birthed a campaign called “Healing Starts With Us,” launched by Williams’s nonprofit organization, The Stay Strong Foundation. In turn, the campaign generated a series of “Open Book” forums—community gatherings where people share and listen to the testimony of others who have experienced depression. “These are opportunities for people to come forward and speak their truth,” Williams says. “You never know who you’re going to touch when you share yourself or speak about the issue. It’s a huge-ass elephant in the room everywhere we turn.” To date, the forums proved therapeutic for people in cities across America, enabling them to free the beast within. And
and the elderly, Williams says. “We have to break the pain of silence and talk about this stuff,” Williams says. “We have to share our stories with each other so people don’t feel like they’re standing on the ledge alone.” Part of her effort includes lobbying to get people the mental health care they need. What’s important is to normalize mental health treatment so that seeing a therapist is just like visiting any other doctor, Williams says. “How is it that it’s much more acceptable to get physical health care and visit a medical doctor, but you don’t get the same reimbursement for mental health care?” she asks. “People are hurting, and it keeps us from being all that God has called us to be,” Williams says. “It’s just that simple.” ■ SPRING 2011 SANE 9
Field of Genes
Unlocking the Future of Mental Illness Research.
X PE RT S SAY OU R L I M I T E D understanding of the brain has caught up with us and that psychiatric drug development has hit a wall. The best way forward, according to Huda Zogbhi, MD—a professor at Baylor College of Medicine in Houston and an investigator with the Howard Hughes Medical Institute—might lie in our genes. Common wisdom says that if you want to cure a disease, you need to understand the underlying causes of that disease. There are theories for how depression, bipolar disor-
10 SANE SPRING 2011
der and schizophrenia spring from chemical and structural problems in the brain, but our limited understanding of the process has brought us about as far as we can go in terms of developing new treatments for these disorders. If we want better treatments, then we may need a genetic revolution. Thomas Insel, MD, the director of the National Institute of Mental Health (NIMH), says what a growing number of studies have been suggesting for some time: “If we are honest with ourselves and our patients, we need to admit that today’s treatments, both
medications and psychosocial interventions, may be good, but they are not good enough.” He points out some of the deficiencies of current treatments—and the worrisome fact that the “old model” of drug development for mental illnesses isn’t working anymore. The key question is what to do about an imperfect system that probably isn’t capable of bringing mental health treatment to the next level. To answer that question, Insel referenced a proposal issued by a group of leading neurobiologists and geneticists in the journal
GETTY IMAGES/JOHN LABBE
By David Evans
Science. In short, Zoghbi and her colleagues proposed we spend more on studying genes in people with mental illness and mapping the neuronal circuits of their brains. Our genes, along with our environment, shape our brains over the course of a lifetime. Among other things, genes have the capacity to spur the creation of a new cell or to generate proteins that affect the behavior of other cells. Think of a row of dominos that splits in two, and then four, and ultimately hundreds of different rows. Tip just one domino and it determines the action of a thousand others. Though the example is highly simplified, that first domino is the equivalent of a gene. Thus a single gene in the brain—a system so complex we still don’t fully understand it— can have a profound effect on a person’s thinking and mood. Zoghbi hopes that mapping the influence of specific genes on the brains of people with diseases like schizophrenia or autism will one day lead to better treatments. She acknowledges that this kind of research won’t generate quick returns, but it could pay off handsomely in the long run. “[By doing research] today, it will increase our likelihood that in maybe 10 to 15 years we might have interventions that will make the lives of patients better,” Zoghbi says. SYSTEM FAILURE In a controversial blog post on this topic, Insel spelled out the traditional model of developing medicines for psychological disorders. First, the NIMH funds early research to discover how molecules in the brain work and influence diseases. Then the pharmaceutical industry, along with academic scientists, screens millions of chemical compounds to find those that act on the target molecules in the brain. At that point, industry takes over, developing the chemical compounds into drugs and then testing them, first in animals and then humans. If a drug makes it to U.S. Food and Drug Administration approval, the NIMH often compares the new drugs with a host of older ones and determines how much—if any—additional benefit the new drug offers in terms of efficacy or safety. “This traditional model appears to be in trouble,” Insel says. “Over the past year, biotech has gradually moved away from
“OUR GENES, ALONG WITH OUR ENVIRONMENT, SHAPE OUR BRAINS OVER THE COURSE OF A LIFETIME.” central nervous system (CNS) targets, citing the difficulty of creating new drugs in this area. [In 2010], two major pharmaceutical companies for antidepressants and antipsychotics, GlaxoSmithKline (GSK) and AstraZeneca, have announced termination of their psychiatric medication development programs. There are worrisome indications other companies may soon follow.” According to Insel, one of the main problems is that drug development based on our current understanding of the molecular underpinnings of the brain are no longer resulting in medications that work. The next generation of treatments might require expanding our knowledge of how genes influence mental illness. ENTER THE GENETIC REVOLUTION The prospects for developing revolutionary new drugs over the next several years are not particularly high. According to Zoghbi, this is due in large part to our lack of knowledge about the basic mechanisms that underlie many major mental illnesses. “Think about how common schizophrenia and autism are, and yet we know so little about how many molecules can really cause the neurons to malfunction to give you features of [those conditions].” She continues, “It’s like wanting to have the most effective transportation system in a city but you have no clue about the number of people who need the transportation: where people live, where people work, where they want to go…. [We need] to identify the building blocks, the molecules and the neuronal types and the circuits that could be affected and lead to any of these diseases. The payoff of this kind of work will be big.” Identifying the aberrant genes that are common to people with specific diseases can lead to studies that investigate the role of
those genes in cells, then in cellular networks, and ultimately in behavior and thinking. This kind of research could give rise to the next generation of diagnostic tests and treatment tools for specific illnesses. Understanding the genetic basis for disease is only part of the picture; environment also plays a prominent role. Forty years ago, the “nurturists”—those who believed that a person’s upbringing and environment were at the heart of most illnesses—held sway. Then the “naturists” swept in and showed in various experiments how important brain chemistry and function—and the genes affecting them—were to the development of psychological disorders. For much of the past 40 years, those two camps have been in serious conflict. Fortunately, the field has evolved to embrace both views. “If you’re doomed to be born with a gene that makes you susceptible to certain diseases, by understanding the relationship between the gene and the environment, you can actually capitalize on that and manipulate the environment so that you can still be functional,” Zoghbi says. Exploring this new avenue of science is going to take money, and lots of it. She believes that the NIMH shouldn’t abandon ongoing research, but feels that a significant investment in genetics and neural circuitry is a must to come up with transformative solutions. “It is more productive for society to spend money on understanding why something is wrong, how it goes wrong and what you can do about it, than to simply let things go wrong and see how we can put Band-Aids on them and patch them, ” she says. “ We spend a lot more money on [proverbial] Band-Aids, and I just hope we take advantage of this opportunity to really get to the root of the problems and how to prevent them.” ■ SPRING 2011 SANE 11
Stephen A. Puibello started experiencing mental health issues as early as middle school. “I always knew I was different growing up, so I always knew that something was going on [mentally],” says Puibello, who now advocates for mental health and HIV/AIDS issues for the lesbian, gay, bisexual and transgender (LGBT) community. His symptoms included mania, insomnia and anxiety. In 1996, at the age of 35, he was diagnosed with bipolar disorder (also known as manic-depressive disorder) shortly after an HIV-positive diagnosis. “I was in shock, I had suicidal thoughts, I was extremely depressed, I lost a lot of weight from not eating, and I started to withdraw from people,” Puibello says. “I lost my job, my condo, went on Social Security Disability Insurance [SSDI] and started a very slow road adjusting to life living on only SSDI.” Despite having his life upended, Puibello learned to adhere to his medications for HIV and bipolar disorder. But, with the exception of close family and friends, he still remained isolated from others. Nationally, about half of people receiving care for HIV have a psychiatric disorder. Depression is also two to three times more common among people with HIV than in the general public. When Puibello went searching for support, he got involved with the Boston Living Center—a clubhouse for people with HIV/AIDS. While the center helped him overcome isolation, he couldn’t find any support groups for those who were living with both HIV and mental illness. It was even more challenging to find clinics and hospitals that were gay affirming, he explains. But Puibello didn’t let that stop him from finding a way to cope with his mental illness. He started educating himself about bipolar disorder by reading the latest studies, articles and interviews about people living with the condition. “[Educating myself] gave me a reaffirmation that I’m not alone, and it gave me hope that there are other people out there like me,” he says. Getting educated about his mental illness led Puibello in 2004 to create Bi Polar Bear, a website where he shares his experiences as a gay man recovering from substance abuse and living with bipolar disorder and HIV. It’s also a website with resources—including self-help and peer support groups and LGBT community centers specializing in mental health needs for those dually diagnosed with HIV and mental illness. In addition to bringing awareness to these issues, Puibello also brings in much-needed money, often through fund-raising bike rides. To date, he has raised more than $42,000 for HIV/AIDS rides and LGBT mental health causes. Because winning these battles takes both dollars and sense. —WILLETTE FRANCIS Go to bipolarbear.us for more information.
12 SANE SPRING 2011
T A L K I N G
An estimated 26 percent of Americans ages 18 or older in a given year experience a mental health challenge. If you are one of them, please take the following confidential survey.
Have you or an immediate family member ever been diagnosed with a mental illness?
❍ I was diagnosed with a mental illness ❍ A family member was diagnosed with a mental illness ❍ Both a family member and I were diagnosed with a mental illness 2
Which of the following mental illnesses were you or a family member diagnosed with? (Check all that apply.)
❍ Depression (unipolar or dysthymia) ❍ Anxiety disorder ❍ Bipolar disorder ❍ Obsessive-compulsive disorder ❍ Hyperactivity disorder ❍ Schizophrenia 5
What is your sexual orientation?
What is your ethnicity? (Check all that apply.)
❍ American Indian or Alaska Native ❍ Arab or Middle Eastern ❍ Asian ❍ Black or African American ❍ Hispanic or Latino ❍ Native Hawaiian or other Pacific Islander ❍ White ❍ Other 13
What is your current level of education?
❍ Some high school ❍ High school graduate or GED ❍ Some college or an associate’s degree ❍ Bachelor’s degree or higher
Have you or a family member ever had side effects from the medication(s)?
What is your gender?
❍ Straight ❍ Gay/lesbian ❍ Bisexual ❍ Other
If you or a family member is taking medicaton for mental illness, which kinds? (Check all that apply.)
❍ Male ❍ Female ❍ Transgender ❍ Other
❍ Antidepressant (e.g. Prozac, Zoloft, Wellbutrin) ❍ Antianxiety medication (e.g. Paxil, Ativan, Klonopin) ❍ Mood stabilizer/atypical antipsychotic (e.g. lithium, Geodon, Abilify) ❍ Stimulant (e.g. Ritalin, Adderall, Strattera) ❍ Sleep medication (e.g. Ambien, Sonata, Trazodone) ❍ I don’t know
Do you ever have trouble taking your medication because you don’t like taking it or you forget to take it?
Are you or a family member seeing a psychotherapist?
❍ Yes 6
How long have you or a family member been diagnosed with the illness?
❍ Less than six months ❍ Six months to less than one year ❍ One to five years ❍ More than five years 4
❍ Drowsiness ❍ Unable to get to sleep or stay asleep ❍ Upset stomach, nausea or vomiting ❍ Involuntary movements of your mouth ❍ Jerkiness in your movement ❍ Feeling “flat” or uninterested in things you usually enjoy ❍ Feeling speedy or revved up ❍ Other (please specify): _______________________
If a family member was diagnosed with a mental illness, what is his or her relationship to you? (Check all that apply.)
❍ Husband/wife/partner ❍ Son or daughter ❍ Mother or father ❍ Other family member
If you or a family member has had side effects, which ones? (Check all that apply.)
What is your ZIP code?________
Please fill out this confidential survey at sanemag.com/survey or mail it to: Smart + Strong, ATTN: SANE Survey #1, 462 Seventh Avenue, 19th Floor, New York, NY 10018-7424
EMPOWER YOUR HEALTH
smartandstrong.com You can also find us on Facebook, MySpace, YouTube and Twitter