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Diagnosing the failing health of the system

by Archives November 10, 2004

When Amy Long was 24-years-old, her counselor in the mental institution where she’d been committed scrawled the words “backwards potential” on her medical chart.

Backwards potential. At the time, those words had the sound of a death knell for Long. “I thought my life was over,” she says.

The young woman was shuffling through the halls in a Thorazine-induced daze. A sign on the door outside her hospital room instructed staff to “try to get Amy to speak.” She heard voices. As a child, she was bounced around between two dozen foster homes. She’d been raped and physically abused. One foster parent tried repeatedly to drown her in a bathtub.

Today, Long works as a psychiatric nurse in community mental health settings and inpatient units, is an educator and trainer for the National Empowerment Center, works part-time providing support to people with mental illness for an employment program, and travels the globe speaking to professionals and consumers for improved mental health services.

“Well, it beats lithium!” a grinning Long told a packed house at the Oscar Peterson Concert Hall last Wednesday evening.

It wasn’t the only time Long elicited howls of laughter from the crowd during her two-hour talk. (“Every time Elizabeth Taylor remarries, it’s all over the headlines. Nowhere does it ever say, ‘she’s got an adjustment disorder’,” she quipped. Or, “I believe there are two kinds of people: those who’ve been diagnosed, and those who haven’t.”) But by the end of her story, there were more than a few misty eyes in the audience as well.

Amy Long has a message for professionals and sufferers alike: The current mental health system is boxing patients in with diagnostic language, low expectations, and a concept of “recovery” that has more to do with pills, implants, and attaining a narrow definition of ‘normalcy,’ than it does with the patient’s quality of life.

Long’s concern is echoed by others in the mental health field.

“Canadians with mental illnesses are not doing as well as we would hope,” said Ella Amir, director of AMI-Quebec Alliance for the Mentally Ill, at a conference last Friday entitled “Do You See What I See? Visions for Shaping Mental Healthcare.”

Amir mentioned a study she came across that examined the impact of cultural beliefs on the recovery of people with psychiatric disabilities. “To my surprise, it found that prognosis rates of people with psychiatric disabilities are better in India than in the United States. At first glance, these findings appear to defy logic.

How can we explain that in India, a country with one-sixth of the world’s population, where there are 3000 psychiatrists and only 400 psychiatric nurses, individuals are doing better than in service-rich countries like Canada and the United States? Do they know something that we don’t?”

Long echoed the sobering statistics; In the past 15 years, mental illness have doubled. “How is that possible? We have the most cutting-edge meds,” she said. “We have better technology now than we did fifteen years ago.”

A report entitled “Disintegrating Systems,” published by the Bazelon Center for Mental Health Law in Washington DC, states that “For decades, state mental health systems have been burdened with ineffective service-delivery programs and stagnant bureaucracies. Their operations have become rote, spurred to change only by crises… The public mental health safety net is stretched too thin and has holes in some places.”

What happens to people who fall through these holes? Today, jails and prisons form the “safety nets” for the bulk of mentally ill people, and homeless shelters and nursing homes become “housing of first resort for the mentally ill,” said Long. Since the domain of public health is only open during business hours, the bulk of the responsibility for mental healthcare falls squarely on the shoulders of other systems, which operate 24/7.

“We don’t need a paradigm shift,” said Long. “We need a revolution.”

This recovery-based revolution would first be based on a different definition of recovery. “I, quite frankly, have heard the word recovery ad nauseam,” says Long. “Recovery should be a pit-stop, not something to get stuck in.” To Long, recovery means “having a reason to get up in the morning; a sense of spiritual empowerment. It’s not about being symptom-free, or never having another anxiety attack, or whether you’re on medication or not.” Long gave her definition of recovery as “when a community deems valuable the contributions made by the individual to that community.”

The revolution involves a shift from our current paternalistic system to a more patient-involved one. “The healer lies within, not without,” she says. A recovery-based model is about a shared sense of responsibility and knowledge, “not just the doctor telling me ‘do what I say and shut up’.” The patient’s personal knowledge and experience needs to be respected.

Long argued that in this system, we create mental patients through the language we use. “We don’t even give names to patients. We call them by their diagnoses. In the hospital, we say, oh, you can take the two bipolars, I’ll take the schizophrenic. To the patient, it feels like you’ve been branded with the scarlet letter M.I.” The patient boxes himself in based on the symptoms and characteristics associated with that diagnosis. He internalizes the stigma surrounding that diagnosis and is then beset by “the cloak of shame,” as Long put it. “And we lower our expectations of them,” she added. “Language can heal us, but it can also make us sicker. We need to paint a different picture.”

“Once shame sets in, you begin to self-limit,” Long explained. “But the diagnostic coding was never meant to be an excuse as to why you can’t do something.”

Long had a patient come through the doors of her employment advocacy center who was an environmental engineer making $80,000 a year before. She had a breakdown and was sent to the hospital. After she was discharged, she was told not to go back to her job because it was “too high-stress” for her. She was given an $8/hour filing job in a hospital. “She was bored to death,” Long recalled.

“It took two years and 112 interviews, but that woman is now making $95,000 as a higher-level engineer than before. And her doctor said she couldn’t do it.”

But what about Long? What prompted her on the road to recovery after her counselor deemed her “backwards potential”?

For two-and-a-half years, she only spoke when spoken to. She was ignored by doctors and felt demeaned and dehumanized by the system. “I learned that it wasn’t about engaging. They only offer you what’s billable,” she said. Withholding speech was her only way of protesting the inefficacy of the therapies forced upon her – “They could force medicate me, force feed me, coerce me into therapy – but they weren’t going to have any way of knowing what was going on in here,” she said, motioning to her heart.

What got her through, she said, weren’t the medical professionals. The people who helped her to get better were those who believed she was more than her diagnosis. A nurse who told her “I believe you’re going to be out of here someday” every day as she walked past in the halls. A psychologist who shed a tear – a real tear – during a therapy session. “I recovered in leaps and bounds after that. I had never been given somebody who cared enough to admit that my pain touched someone. And that’s all I needed,” she said.

The friends who visited her on the psychiatric ward alsp helped. Through them, Long was able to see “a snapshot” of her prior self, what she had been like before hospitalization. She was able to recall a sense of the Amy who liked to laugh, who’d majored in drama and enjoyed margaritas.

Long also touched on the isolating nature of a technology-driven world as one of the main impediments to healing. Although modern gadgets like e-mail, cell phones, and answering machines have increased the speed and frequency at which people communicate, the nature of communication is more impersonal. “We have unconsciously become so disconnected,” she says. Reflecting on this more, she adds a poignant analogy: “When you keep something in isolation and darkness, it festers like a germ inside of a lung. A flower can only blossom when it’s exposed to the light.”

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