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).
More on Mental Health