🎧How You Tell Your Story
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How you tell your story matters. Anyone with a psychiatric diagnosis has an illness narrative running in their head.
In books and stories about mental illness, that narrative tends to follow a standard plot line: symptoms, diagnosis, treatment, and acceptance of life with the diagnosis. The diagnosis is a pivotal moment in the rising action: Will it bring relief, a way to finally name and legitimize the protagonist’s pain? Often she rejects the diagnosis—at first—because her medication limits her creativity and/or changes her personality and/or leaves her emotionally numb. Eventually, she embraces her diagnosis and treatment and finds relief and strength (hooray!). Then the book ends, and the protagonist is left to live out her illness narrative in perpetuity.
I followed this narrative for twenty-five years. At first, each of the six diagnoses I received seemed to hold the key to my suffering—yes, I am obsessive and compulsive; yes, I am clinically depressed; yes, I am extremely anxious; yes, I do get manic and then depressed; yes, I am easily distracted or hyperfocused and hyperactive; yes, let’s try that type of therapy, that brand of meditation, that yogic breathing technique, that diet, those herbs, that pill; yes, yes, yes. But no diagnosis or treatment fully explained or relieved my suffering. I went from one waiting room and doctor and therapist and alternative treatment to the next. The point of every treatment—traditional or alternative—was to find relief and strength, not become fully well. My narrative was that I was sick—always.
To appreciate how we’ve come to believe mental illness is a life sentence, it’s important to understand psychiatry’s history. For the past two hundred years, psychiatric research and treatment haven’t focused on healing. The prevailing notion has been that recovery isn’t possible; the goal has been to find the cause of mental illness, which will someday, they hope, lead to a cure. One cause. One cure. Cure—the noun—a magic bullet, not a process that considers the various factors that cause psychiatric disorders: environment, social support, trauma, physical health, etc.
Psychiatry’s preoccupation with cause and cure has been carried out with the best intentions and has had catastrophic results. It’s meant that patients, particularly those from historically marginalized populations, have been neglected at the expense of research. Nineteenth-century public asylums were overcrowded and inhumane. Patients were neglected or brutalized. “Care” entailed being chained and abused and not given clothing or food. Treatments have focused not on healing but controlling patients. They’ve often been untested, inhumane, violent, even fatal: bloodletting, ice baths, insulin comas, early electroshock therapy, injecting patients with malaria, the surgical removal of body parts, neglect, isolation, restraints, physical abuse, incarceration, psychotropic medications with dangerous side effects. We’ve created a mutually causal situation: The psychiatric condition requires treatment that often exacerbates it.
The incurability of mental illness has long since been presumed. In Desperate Remedies: Psychiatry’s Turbulent Quest to Cure Mental Illness, sociologist Andrew Scull meticulously documents how America’s asylum system influenced psychiatry’s and the public’s views of mental illness. He writes, “[A] large proportion of the population came to be composed of long-stay patients, and it was this specter of chronicity, this horde of the hopeless, that was to haunt the public imagination…and to dominate late nineteenth- and early-twentieth-century psychiatric theorizing and practice.” Although a small group of reformers embraced a “cult of curability” and created environments that fostered healing, they were private institutions available only to those who could afford them.
During the early twentieth century, psychiatry began to see and treat patients not just as hopeless but as degenerates the public needed protection from. Darwinian theory, the eugenics movement, and biological and hereditary explanations for mental illness solidified the idea that mental illness was permanent and that patients needed to be prevented from mixing with society. Laws were passed preventing those with mental illnesses from marrying and reproducing.
Other twentieth-century theories of mental disorder may have lent themselves to a more forgiving attitude toward patients—bacterial theory, psychobiology, Freudian psychoanalysis.
But in the 1980s, the dominant strain of psychiatry turned to the biomedical model and the misconception that mental disorders are purely biological. From the most stigmatizing symptoms to the least, people were told that depression and irritability and distractibility and anxiety and obsessions and compulsions and psychosis represent an irreparable brokenness in the brain. Billions of dollars were spent on psychiatric theorizing and research based on the “specter of chronicity” for the “horde of the hopeless.” The word recovery didn’t appear in a single government policy regarding mental illness until 1999.
I know you don’t want to hear this. It disrupts our mental illness narratives. It sounds like I’m saying mental illness and emotional distress aren’t real (which I’m not). I’m saying we could give recovery a chance. We could consider the ineffectual, traumatizing, and sometimes life-threatening care patients have received and ask how anyone could heal in those conditions.
Morning sunlight comes in the classroom windows, glinting off the whiteboard. The students move the tables into a U shape, seminar-style. I close the blinds partway. As they lower, it’s as if I’m being lowered too.
Dr. R and I have gone too low on my dosage of the antipsychotic I’ve been on. Panic and dizziness kept me awake most of the past few nights. An itch that’s not an itch makes it feel like bugs are crawling on my skin. Yesterday, I had to duck into an alcove between two buildings to sob—at length—my back to the sidewalk and people passing by. I called Dr. R that morning, and he readjusted my meds, but it will take time for the withdrawal side effects to go away.
My students settle in. For class, they read Adam Haslett’s “Notes to My Biographer.” It’s an oddly funny but heart-wrenching short story. The protagonist, Franklin, suffers from manic depression. He’s nearly destroyed his family because he won’t get treatment and accept his diagnosis. Franklin visits his estranged adult son, Graham. Graham reveals to his father that he has manic depression, too, but he takes his medication.
I’ve taught the story many times, connecting deeply with the pain the disorder has caused the characters, but while re-reading it this time to prepare for class, I didn’t have the same response. Haslett’s story does what great literature can do: the same story or novel or memoir resonates with us differently at different times in our lives. The story has changed because I have.
The story is still heart-wrenching but not for the same reason. What saddens me isn’t their pain or disorders. Franklin and Graham have been given no chance of recovery, only treatment. No wonder Franklin and others reject a diagnosis. There’s no hope, only acceptance. And those seem the worst fates of all.
Continue to Chapter 4.