When Lizzie Simon was diagnosed with bipolar disorder nine years ago at age 17, she kept her condition a secret because she worried her peers and adults would think the worst of her. “I thought people would be afraid of me,” says Simon, now 26, in a recent telephone interview from her home in Brooklyn. “I thought people would see me as ‘crazy,’ ‘unstable,’ and ‘unreliable.’”

Since then, however, Simon has dared to break the silence surrounding her diagnosis, and show that young people with bipolar disorder can be productive, creative, and successful. Detour: My Bipolar Trip in 4-D (Atria Books), a memoir released in June, tells Simon’s story of her diagnosis and her mission to find other young people leading successful lives with the disorder and tell their stories as well. The book has made Simon a voice for a significant, yet quiet, population.

Diagnosis—and Label
The Child and Adolescent Bipolar Foundation conservatively estimates that 750,000 children and adolescents have bipolar disorder. The disorder used to be commonly referred to as manic depression. According to the National Institutes of Mental Health (NIMH), the illness is a brain disorder that causes dramatic shifts in a person’s mood, energy and their ability to function. The shifts in mood can range from intense “high” periods, also called “mania,” to intense dark periods of sadness or depression.

The NIMH reports that bipolar disorder typically develops in late adolescence or early adulthood, while the first symptoms can occur in childhood. It is a long-term illness, but it can be treated with medications and psychotherapy. “Mental illness carries one of the biggest stigmas,” says Dr. Adelaide Robb, assistant professor of psychiatry at Children’s National Medical Center, who runs the hospital’s inpatient adolescent psychiatry unit for youth age 12 to 18.

High Achiever
“A bipolar diagnosis is not a death sentence,” says Simon, noting that when young people make a commitment to proper treatment and receive support from their families, they can lead productive lives. “A bipolar young person can achieve anything he or she wants to achieve.”

In addition to writing her memoir, Simon recently served as a field producer and consultant for “True Life: I’m Bipolar,” a documentary that aired in July on MTV. As she did for Detour, Simon found young adults with the disorder for the documentary and interviewed them. “It helped to give a visual representation of what people with mental illness look like,” she says. “They’re not freaks in a mental institution, but people sitting next to your in your classroom.”

Simon was diagnosed during her senior year in high school in Paris 1993. After a serious bout of consistent sobbing, sleep deprivation, and fatigue, Simon went to a therapist who prescribed Paxil, an anti-depressant. But several days later, Simon became psychotic, believing she was a cat and a target of the CIA. A psychiatrist determined the psychosis was a toxic reaction to Paxil—a drug that can induce mania in bipolar patients. Simon was given a prescription for lithium—a mood-stabilizing drug—and has been on the medication ever since.

Simon was then able to complete college, land a job at Flea, and rent an apartment in Brooklyn. “I started settling into a normal life,” she says. “Rebuilding my self-confidence.”

In1999, Simon saw a poster in the subway, showing a woman dressed in a business suit with the slogan “For People With Mental Illness, Treatment is Working,” written across her chest. The image inspired Simon, then 23, to come up with the idea of traveling across the country to interview other bipolar adults who “survive the illness and live full lives.”

Simon financed her idea with $5,000 in savings and a $5,000 grant from the Federation of Families for Children’s Mental Health, a national parent-run organization that advocates for children and youth with mental illness. Barbara Huff, executive director of the Federation, helped fund Simon’s project through a grant from the Substance Abuse Mental Health Services Administration. Simon was required to investigate the effects of substance abuse on the lives of bipolar youth as part of her work.

Struggling to Find Balance
Simon quit her job at the Flea Theatre and spent six weeks traveling to seven different cities to find her subjects. Simon interviewed a diverse group of six young adults, all under the age of 30, who manage their mental illness after years of personal turmoil. Simon discovered that many bipolar young people struggle to find the right mix of medications and when they do, must make a conscious effort to remain in treatment. Most also rely on the support of their families and tell few others of their condition—the stigma is too costly.

Matt, in his early 20’s, was diagnosed during his sophomore year in college and spent about three years trying to find the right mix of medications. He also underwent several electric shock treatments. Now that he’s taking a psychotropic drug and two anti-depressants, Matt is able to work full-time at a bookstore. He credits his family for “keeping me moving.”

Jan, a radio dj, was diagnosed in her late 20’s, and struggled with an eating disorder and drug addiction. Jan’s medications require her to have frequent medical check-ups, but she knows she can’t forsake treatment. “…Treatment allows you to be who it is you are and who it is you want to be without repercussions,” Jan tells Simon. Jan is currently raising two children.

Rachel, a young Korean woman diagnosed in high school, went on a credit card spree during her mania. Now stable on medication and in therapy, she says her family’s support is what inspires her to go on to college. But none of her peers know about her illness. “If the girls in my school ever found out about my being manic depressive, I’d be out,” says Rachel. “They’d make my life hell.”

Simon says since the publication of Detour, she receives about 20 e-mails a day from mentally ill youths and their families. “The kids worry about stigma, about getting sick again, and about stability and whether or not they will be able to have a regular life,” says Simon. Simon is careful not to give medical advice, and instead refers people to her website—www.lizziesimon.com—where she provides answers to a list of frequently asked questions about bipolar disorder and links to mental health organizations that provide information, support, and advocacy.

“This is a very serious disorder that can disrupt their lives,” says Dr. Mani Pavuluri, director of the Pediatric Mood Disorders Clinic at the University of Illinois at Chicago where she provides counseling and medication management for youths age three to 21.

Pavuluri says young people may resist treatment due to the side effects of some medications—tremors, weight gain, and decreased energy. “They don’t want to face others because they don’t want people to notice the side effects,” says Pavuluri. Yet young people are also frightened by the psychotic episodes and mood swings that occur if they don’t take proper care of themselves.

Dr. Robb says that for adolescents and young adults, it is “socially acceptable” to have a drug or alcohol problem, but not a mental health disorder. Robb says that’s one reason many young people with bipolar disorder use drugs and alcohol to mask their illness. “People don’t understand it (mental illness) and they’re afraid of it,” says Robb.

Robb and Pavuluri say most young people keep their diagnosis to themselves. “They’re afraid they’ll be called nuts… They want to be cool,” Pavuluri explains. “They want to be normal.”

The doctors say that to fight the stigma of bipolar disorder, particularly among young people, the media must do more to create a positive image of health and normalcy for the mentally ill. “Famous people with bipolar disorder have to come out and talk about it,” says Robb.

Robb says Simon’s MTV show on bipolar disorder was “excellent,” and should be followed by other youth-oriented programs on mental health. Says Pavuluri, “ we have to create empathy and show the mentally ill as real people.”

Simon is trying to do just that. Simon and her father are working to develop a scholarship fund to support the work of young writers with mental illness. She is also touring the country to promote her book and gives lectures on mental health issues.

At a recent lecture at the University of Pennsylvania, Simon says the students showed an interest in learning more. “Many of them know that the onset of bipolar disorder can occur in the college years and they worry about friends who may have it,” says Simon. “They were open to my message—get diagnosed, commit yourself to treatment and pursue what you are passionate about so you can have the life you want to have. You are not your diagnosis.”

Resources:

• Visit Connect for Kids' children's mental health topic page
• Child & Adolescent Bipolar Foundation
• National Alliance for the Mentally Ill
• Federation of Families for Children’s Mental Health

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Lisa R. Rhodes is a freelance writer living in Maryland. She is a member of the National Alliance for the Mentally Ill.