Your Mental Disorder Accrues Via Compound Interest

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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 start to lift my hand as if to stop him 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, I’ll never recover.

“It can be helpful,” he says. “Navigating.”

I shake my head.

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There’s nothing wrong with psychiatric diagnoses—even if they are 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, lifestyle, and context aren’t taken into account. 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:

1. depressed mood

2. loss of interest/pleasure

3. weight loss or weight gain

4. insomnia or hypersomnia

5. restlessness or lethargy

6. fatigue

7. feeling worthless or excessive/inappropriate guilt

8. decreased concentration

9. 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.

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Onscreen is the Drop the Diagnosis! conference via Zoom. It’s run by a British organization I’ve never heard of that vows to challenge the culture of psychiatric diagnosis. Two men and two women sit on a stage. I take notes but can barely keep up.

One of the men says, “Treating in terms of diagnoses isn’t working. Rates of mental illness are increasing, as are suicide rates in some cases. We need an alternate system.”

They talk about transdiagnostic approaches to mental health problems. The transdiagnostic approach conceptualizes mental dysfunction along a continuum and targets the processes common to the diagnoses we now use: perception, thought, language, attention, learning, memory, emotion, and sensation. Instead of labeling a patient with major depressive disorder or generalized anxiety disorder or PTSD or anorexia, the focus is on the underlying process present in all these disorders. It acknowledges and embraces the myriad causes that contribute to mental and emotional distress and stresses their complexity and the unique ways they manifest in each person.

Onscreen, the moderator asks a question I miss because I’m too busy taking notes. One of the panelists answers, “Iatrogenic harm.”

I google it, butchering the spelling (itragenic?), but Google Scholar suggests the right word. Iatrogenic harm refers to the damage caused inadvertently in the process of treatment, whether by the careless use of diagnostic labels, misdiagnosis, overdiagnosis, over-medication, withdrawal from medications, abuse, etc. Iatrogenic illness typically refers to the adverse effects caused by physical medical treatments, but it can be applied to the side effects of psychiatric treatment, too.

It will be years before I read the academic psychologist Lucy Foulkes’ excellent book Losing Our Minds: The Challenge of Defining Mental Illness, in which she encapsulates what we actually know about mental illness and distress. She writes that the causes include “a bundle of hundreds of layers of explanation—some biological and some environmental—and those layers all interact with each other.”

The biological layers include our brains and DNA, but that’s a tiny part of it. Primarily, mental illness is the result of myriad factors: our personalities and psychologies, our past experiences, the societies we grew up in, our friends and family. She goes on: “[Y]ou may be better off just accepting that it all played a role: the factors that led to your disorder are as many and varied as we are.” But if a simplistic medical model dictates treatment, we’re lost.

Most importantly, Foulkes writes how mental illness builds based on compound interest—but not the good kind. The longer one suffers from it, the worse it gets. It’s “a suite of interrelated, mutually enhancing symptoms and difficulties that, once established, might even be said to cause itself.”

A woman on the panel recommends that all patients work with their clinicians to establish an exit strategy—a term I’ve never heard—once they’ve received a diagnosis and been prescribed medication. An exit strategy is a plan for when the patient is better, including how to titrate off medication.

When the patient is better? How they’ll titrate off medication?

Ultimately, my recovery will occur in large part because I give myself an exit strategy, which includes “dropping” my psychiatric diagnosis. Learning the flaws in our diagnostic system is forcing me to heal. The truth about psychiatric diagnoses is unsettling. It means there’s no easy answer, but it also means there’s hope.

Years from now, I’ll discover that in the recovery community (yes, there’s a whole community of people who’ve healed from schizophrenia and bipolar disorder and every other psychiatric condition), diagnoses aren’t even discussed. They’re in the past; recovery is the future.

The definition of recovery that will most resonate with me comes from the Depression and Bipolar Support Alliance (DBSA): “Recovery is the process of gaining control over one’s life—and the direction one wants that life to go—on the other side of a psychiatric diagnosis and all the losses usually associated with that diagnosis.” Because losses come with a diagnosis and being denied the right to heal. No matter how a person receives a diagnosis—whether it’s a misdiagnosis or an overdiagnosis or it comes as a shock a limitation or even a relief—to heal, one has to get to “the other side of psychiatric diagnosis.”

After the conference ends, I walk through the park. Along the path, ten teenagers—most lanky and lean—run past me in a line. Three wear sweatshirts with the name of the high school I attended emblazoned on them. The park sits between my apartment building and my old high school—the school where my mental illness began.

The students run the path ahead of me and loop around. The one in the lead wears a long-sleeved, bright yellow t-shirt without my high school’s logo and name. He runs loose and relaxed, his legs kicking up behind him.

The runners loop around and pass me again. The one in yellow is way ahead of the pack.

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Thank you for reading!

You can buy my journalistic memoir Pathological (HarperCollins), a USA Today bestseller that traces how we’ve come to believe that ordinary emotions are mental disorders.

If you’ve already read it, thank you! You can gift a copy to a friend, your local library, or your favorite used bookstore.