McNamara's distraught parents placed her in a private psychiatric facility. After her insurance company stopped paying for her care, she transferred to a nonprofit hospital, where she was diagnosed with bipolar disorder. She rang in the millennium watching TV in the dreary patients' lounge—and spent the next ten days in treatment as doctors gave her a series of symptom checklists and tried to determine the right medication. She often felt marginalized, belittled, and misunderstood by these psychiatrists, none of whom provided the trauma therapy she thought she needed (and that might have plumbed her history of sexual abuse and assault).
McNamara came out of the hospital convinced there must be a better way; over the next several years she connected with others who shared her thinking. In 2002 she cofounded the Icarus Project, an alternative support group for people struggling with mental illness. "Before we started Icarus, I had zero desire to be an activist for mental health—I had hoped my issues would just go away," McNamara says. "But when I began talking to others like me, I realized that if the help we wanted wasn't out there, we could create it ourselves."
The Icarus Project, an entirely peer-run organization with more than 15,000 members worldwide, is part of a growing, sometimes controversial, cause known as the Recovery Movement, or Mad Pride. The movement's goals: to redefine what it means to be sick for the 45.6 million American adults living with mental illness; develop a more collaborative treatment process between doctors and patients; make the public less fearful of people labeled mentally ill; and most important, destigmatize mental disorders for those who are diagnosed.
"The Mad Pride approach is so different from traditional psychiatric care," says Carla Rabinowitz, 49, a community organizer for a mental health nonprofit in New York City, who says leading peer groups helped her move past the stigma of living with bipolar disorder. "You see people who are thriving, people who are struggling. You see what you need to do to keep yourself going."
In a departure from groups like Alcoholics Anonymous, the Icarus Project doesn't push a particular brand of self-help. Meetings, in places as diverse as Minneapolis and Richmond, are lively, lacking any firm structure, and dark humor is a constant. Members may take turns one-upping each other over the records they've broken while depressed (30 straight days of not getting dressed trumps 20 days of not answering the phone). The Oakland chapter convenes at a crafters' collective to bring an inspiring, creative energy to sessions. New members are often encouraged to create wellness maps, which detail what they're like when they're well—and when they're not—and what friends can do to help.
Next: How wellness maps aid recovery
Christine Chapman, 30, was diagnosed with schizoaffective disorder, which causes both schizophrenia and mood problems, but when her meds did nothing to abate her dark thoughts, she took her frustrations to the group, and members urged her to question her meds. She found a new psychiatrist, who diagnosed her with bipolar II (a milder form of bipolar disorder that doesn't cause full-blown mania) and medicated her properly. Now a stay-at-home mom, Chapman finds support from Icarus members online—another popular option for those who aren't interested in meetings or don't have a chapter nearby.
In the mid-20th century, only one in 13,000 people was hospitalized for bipolar disorder, according to one estimate, but today about 5.7 million Americans suffer from some version of the condition—yet the advent of a wide range of new treatments, mostly prescription drugs, has not necessarily led to greater quality of life. The Icarus Project is firmly against forced medicating but otherwise sets no guidelines; some members adhere to the pharmacological regimens set by their doctors, while others question the necessity of psychoactive drugs at all.
"Medication can take the edge off the extreme emotions, but taking care of yourself in other ways is equally important," McNamara says. Indeed, some studies highlight the benefits of more unconventional methods; one recent report found that schizophrenics who practiced yoga (in addition to taking medication) for four months experienced significantly fewer episodes and enjoyed greater social functioning. Yoga, acupuncture, meditation, and even special diets (like limiting white flour or sugar) are alternative approaches many in the Icarus community have come to embrace.
Not surprisingly, conventional health advocates are sometimes wary of groups like Icarus. They warn against the instability of DIY communities that depend on friends and online peers rather than credentialed professionals. "There are mentally ill people who can integrate into society, but some patients need round-the-clock care," says Art Caplan, PhD, director of biomedical ethics at the New York University Langone Medical Center. "For some, the emotional support offered by these groups is not enough and can lead to dangerous or even fatal consequences."
Other scholars, while acknowledging that some people will never benefit from Mad Pride groups, argue that many do. Bradley Lewis, PhD, an associate professor of psychiatry and humanities at NYU, champions the work of alternative mental health groups. "People are finally questioning the categories in the DSM-5, the latest edition of the diagnostic manual that psychiatrists and psychologists use, as the criteria for conditions are becoming wider to include more and more people," says Lewis. "Mad Pride members have been right to critique the rigid way we define mental states, and hopefully we can begin to treat people from a variety of angles." But Lewis is quick to add that while support groups can provide the sort of help doctors often lack the time or experience to offer, they are only part of the solution to helping the mentally ill lead stable, fulfilling lives.
Yet peer-led groups may be the wave of the future, given the prohibitive cost of comprehensive psychological treatment. The U.S. Substance Abuse and Mental Health Services Administration's annual survey on drug use and mental health estimates that 4.9 million adults who believed they needed mental health care did not receive any (half said they couldn't afford it). "We want to offer people who have given up on traditional treatment, or don't have access to it, an opportunity to find support without feeling ashamed or judged," says McNamara. "We struggle with some hard stuff, but we also have the chance to be wounded healers—and that's a gift."
Adapted from Alissa Quart's new book, Republic of Outsiders: The Power of Amateurs, Dreamers, and Rebels (The New Press).
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