🎧You Don’t Know What You’re Recovering From | Chapter 12
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Dr. R and I sit in our respective armchairs. Out the window, the clouds hang low. His pants have less of a sheen than usual.
He was the only clinician who was honest with me about my psychiatric diagnosis. My other clinicians leveled the six diagnoses I received (over twenty-five years) with such certainty, telling me or leading me to believe they were biological, caused by a chemical imbalance, and unquestionably lifelong—none of which are true. Dr. R admitted he didn’t know what was wrong with me or which diagnosis to use. Any diagnosis would do as long as it got me the best treatment.
Dr. R is also the one who told me about a patient of his who recovered from schizoaffective disorder. He’s made me want to try to get well, even though I don’t really believe mental health recovery is possible, not for a “hopeless” case like me.
The other problem is that I don’t know what I’m recovering from. He hasn’t revealed the label/diagnosis he’s chosen to categorize the mental illness he doesn’t know I’m trying to recover from, and I don’t want to know.
Over the years, I made each diagnosis my identity. Each was a self-fulfilling prophecy. I identified so strongly with it that I came to embody it. With the depression diagnosis, I saw myself as a depressed person. The anxiety diagnosis made me more anxious. With the ADHD diagnosis came the belief that I was simply someone who was easily distracted and had trouble paying attention. The OCD diagnosis made me pay greater attention to my obsessions and compulsions. As someone with bipolar disorder, I saw even the slightest surge of energy or period of low mood as evidence of my illness. It seems that if I want to heal, it’s best not to do that again.
But I can’t recover from an unnamed illness, so I ask about my diagnosis. I sit up straighter in my armchair, crossing my legs at the ankles.
He says, “I thought it was bipolar disorder, but now I’m thinking—”
I hold up my hand and tell him I don’t want to know. My eyes tear up. The office feels stuffy. Dr. R’s desk seems cluttered, insofar as his desk could ever be cluttered.
Dr. R jerks his head back in what looks like surprise. “Most people really want to know—”
Just so long as I get treatment, I say. Otherwise, I don’t.
Out the window, the clouds look greyer but also less threatening. I’ve spent so many years seeing myself as this or that diagnosis. If I continue to do that, I’ll never recover.
“It can be helpful,” he says. “Navigating.”
I shake my head. I’m on a different path now.
*
There’s nothing wrong with psychiatric diagnoses being little more than “constructs,” as Former Director of the National Institute of Mental Health (NIMH) Thomas Insel put it, if you use them for, not against yourself. For many people, they’re a relief, an answer, a way to cope. For some, it’s much more than that. The autism community rallied around that diagnosis and started the neurodiversity movement, which said there’s nothing wrong with them; it’s the neurotypical population that needs to change and appreciate the ways they see and interact with the world.
But many of us see diagnoses as solid, objective realities that are as provable and permanent as physical illnesses that can be shown to exist on an X-ray or brain scan. They can’t. They come not from laboratories and conclusive research studies but from a book: The Diagnostic and Statistical Manual of Mental Disorders (DSM). The DSM started in 1952 with the first edition: the DSM-I. (Each edition is marked by a Roman numeral—DSM-I, DSM-II, etc.—or an Arabic number—DSM-5, DSM-5-TR.) Over the various editions, more and more diagnoses, spectrums, and subtypes were added. Whereas we started with 128 hypothesized disorders in the first edition, we had 541 by the fifth edition. (There’s no agreement on the exact number of diagnoses. Some say over three hundred, others over two hundred. It depends on whether you count subtypes and catch-all categories.)
If you were to open the pages of the current DSM, you’d see a diagnosis listed at the top of the page and, under it, a list of symptoms. If a person has x number of symptoms, that person qualifies for the diagnosis. For instance, if a person has five of nine symptoms listed under the diagnosis of depression (e.g., sadness, loss of interest, weight loss or weight gain, sleeping more than usual or having insomnia, an inability to concentrate), that person can be presumed to have depression. Alongside the diagnosis would be a diagnostic code (e.g., 296.20-296.36 for depression), which is used for myriad purposes: for reimbursement from insurance companies, to receive disability and educational services, and to settle questions of a person’s competence and/or sanity in a court of law. In the current edition, personality and context aren’t taken into account. For instance, someone who’s typically high energy and volatile can still be given a diagnosis of bipolar disorder II. And if someone experiences distress and even grief after, say, having lost one’s job, it isn’t necessarily considered a reasonable response to the situation; the person can be diagnosed with major depressive disorder. The DSM offers no advice in terms of treatment.
Major depressive disorder requires five of nine symptoms:
depressed mood
loss of interest/pleasure
weight loss or weight gain
insomnia or hypersomnia
restlessness or lethargy
fatigue
feeling worthless or excessive/inappropriate guilt
decreased concentration
thoughts of death or suicide
When asked why a patient needs five of nine symptoms, Robert Spitzer, the bio-psychiatrist and architect of the DSM, said, “It was just consensus. We would ask clinicians and researchers, ‘How many symptoms do you think patients ought to have before you would give them a diagnosis of depression?’ And we came up with the arbitrary number of five…Because four just seemed like not enough. And six seemed like too much.” That’s the same criteria we use to diagnose major depressive disorder today.
Within each DSM disorder are myriad combinations of symptoms, which means there is no one major depressive disorder or social anxiety disorder or bipolar disorder or ADHD. There are over a thousand combinations of symptoms for major depressive disorder, meaning getting the diagnosis doesn’t actually indicate a particular set of thoughts, feelings, and behaviors.
Diagnoses have been created and the criteria loosened over time so that as many people as possible can receive them. The patient needs only to have experienced five symptoms for just two weeks. The DSM requirement used to be two months until the DSM steering committees and task forces whimsically decided more people needed the diagnosis and shortened it to two weeks.
Psychiatric diagnoses are useful because we use them to get people care, but none is scientifically valid, meaning no test or scan can confirm or show it objectively exists; a diagnosis is based entirely on self-reported symptoms and a clinician’s opinion. (Exceptions include dementia and rare chromosomal disorders—though many clinicians and researchers don’t consider these psychiatric disorders at all.) DSM diagnoses are also largely unreliable, meaning that clinicians can’t agree on the same diagnosis for the same patient even if they see that patient at the same time.
True, physical medicine has some diagnoses that can’t be definitively shown on a test or X-ray—migraines, auto-immune diseases. The problem is that mental health clinicians and GPs don’t always make their patients aware that the diagnoses they’re given are abstractions intended to be used for clinicians to communicate with each other. We’re given diagnoses—often by GPs wearing white coats with stethoscopes around their necks—and are led to believe those diagnoses are conclusive and lifelong.
I understand why we wouldn’t want to expose DSM diagnoses for what they are. They hold sway over hundreds of millions of lives: 46 percent of American adults and 20 percent of American children and adolescents will receive one of its diagnoses in their lifetimes. They’re part of the public imagination, the filter through which we view our mental and emotional lives. Emotions like depression and anxiety are used interchangeably with the diagnoses of anxiety and depression. Our ideas and beliefs about mental disorders—“clinical” depression, anxiety disorders, schizophrenia, etc.—shape how we view ourselves and each other. For some patients and their loved ones, diagnoses offer a kind of certainty, and certainty feels good.
And we want people to get help and/or treatment if they need it. But as the sociologist and historian of psychiatry, Allan Horwitz will later tell me, before the 1970s, most patients didn’t know their diagnoses; they just got help. And many of them—many of them—healed.
» Continue to Chapter 13.
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