State of Mind

What It’s Like to Be Diagnosed With a Mental Disorder That “Doesn’t Officially Exist”

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Excerpted from What My Bones Know by Stephanie Foo. Copyright © 2022 by Stephanie Foo. Excerpted by permission of Ballantine Books, an imprint of Penguin Random House LLC. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.

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Learning about C-PTSD is not easy because it doesn’t officially exist. The name “complex PTSD” is somewhat new, coined in the ’90s by psychiatrist Judith Herman. And it doesn’t exist because it isn’t officially in the Diagnostic and Statistical Manual of Mental Disorders, which is essentially the bible of mental health: If it’s not in there, it ain’t real. There was an effort by a group of mental health experts to include it in the DSM-5, which was published in 2013, but the faceless arbiters of mental health behind the DSM—a group of psychiatrists I envision as a society of hooded figures chanting around a sacrificial child star—decided that it was too similar to PTSD. There was no reason to add a “C,” no need for a distinction between the two. It’s worth mentioning, however, that the U.S. Department of Veterans Affairs and the United Kingdom National Health Service both recognize C-PTSD as a legitimate diagnosis.

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Because it isn’t in the DSM, there isn’t much literature on C-PTSD. What does exist is often dry, dull, and written with all the kindness and emotional intelligence of a tech bro. But still, I was desperate to learn, so I bought a small stack of books, each with a vague impressionist painting on the cover coupled with uninviting font. And I made my way through them, one painful page at a time.

The books taught me that when we live through traumatic experiences, our brains take in the things around us that are causing the greatest threat, and they encode these things deep into our subconscious as sources of danger.

Let’s say, for example, that you are hit by a car. Your brain registers the noise of the car screeching to a halt, the grille speeding toward you. It shoots out an onslaught of stress chemicals like adrenaline and cortisol that elevate your heart rate and blood pressure, narrowing your focus to the thump of the impact and the pain and the sound of an ambulance. But at the same time, your brain is subconsciously taking in thousands of other pieces of stimuli: the foggy weather, the Krispy Kreme at the intersection, the color and make and model of the car, the Midwestern accent of the guy who hit you, his blue Wolverines T-shirt. And your brain imprints deep inside itself the powerful connections between these stimuli and this pain.

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These associations are stored in your brain along with the corresponding emotions from that day. And they often do not come with full stories. Therefore, your brain might not encode the logical connection between the Krispy Kreme and the car crash. It might simply encode: KRISPY KREME. DANGER.

The result is that when you see a glazed doughnut or a blue Wolverines T-shirt, you might become uneasy without understanding why. Your brain is recognizing a pattern that it has flagged with life-or-death importance, and it reflexively shoots out what it believes to be the appropriate emotional response. This reflex might manifest in a big way, like a panic attack. Or it might manifest in a smaller way, like suddenly feeling very grumpy. You might decide that you’re irritated at your girlfriend for a mildly stupid thing she said that morning and text her to say so. None of this, of course, is reasonable or rational. But your brain is not trying to be reasonable. It’s trying to save your life.

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If someone pulls out a gun near us, we shouldn’t need to ponder for a few minutes about the make and model of the gun and how guns work and what caliber the bullets might be and the amount of damage they might do. If we see a gun, we need to know one thing, and we need to know it fast: GET DOWN. MOVE. RUN.

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What we might think of as emotional outbursts—anxiety, depression, lashing out in anger—aren’t always just petty, emotional failings. They may be reflexes designed to protect us from things our brain has encoded as threats. And these threatening inputs are what many people call triggers.

No, having triggers doesn’t make you a fragile little snowflake. It makes you human. Everyone has them, or will have them eventually, because everyone will experience some form of trauma. That annoying blank stare your ex used to give you. The sound of the ventilator your grandmother was hooked up to in the weeks before she died. Having an emotional response to a trigger is perfectly healthy. Those triggers are only considered PTSD when an event is so traumatic that its triggers cause symptoms like panic attacks, nightmares, blackouts, and flashbacks—when the emotional response becomes debilitating.

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And here’s what makes complex PTSD uniquely miserable in the world of trauma diagnoses: It occurs when someone is exposed to a traumatic event over and over and over again—hundreds, even thousands of times—over the course of years. When you are traumatized that many times, the number of conscious and subconscious triggers bloats, becomes infinite and inexplicable. If you are beaten for hundreds of mistakes, then every mistake becomes dangerous. If dozens of people let you down, all people become untrustworthy. The world itself becomes a threat.

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I put down the books and stared at the wall for hours after reading these sentences, trying to figure out what they meant for me specifically. I started counting some of my obvious triggers. Whenever I saw an angry man, I’d get intensely pissed at them—my boss; my boyfriend, Joey; a random guy in the street. Whenever Joey chewed the inside of his cheek or set his jaw a certain way, the exact way my father used to clench his, it enraged me. I’d snap, “What? What’s wrong? What’s your problem?” Often, he would look at me in surprise and confusion.

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“You’re mad,” I’d insist.

“I’m not mad,” he said, mad. “Why do you think I’m mad?”

“I’m intuitive! I’m good at reading people,” I said.

Then I read a section in one of the books that featured a long line of photos of a woman making various expressions—transitioning slowly from a sad face to an angry one. A study at the University of Wisconsin showed these pictures to children who had not experienced abuse, then to children who had. The abused kids thought that more of these photos presented an angry threat than the children from normal homes did. They were hyperalert to even the smallest twinges in facial expressions.

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Was Joey actually mad? Or was I interpreting the tiny knots in his forehead as anger because I was a paranoid crazy person? What was real?

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If I could misinterpret a furrowed brow, what else could I misinterpret? I must possess a million subconscious triggers, so how much of the world, exactly, is my brain incorrectly afraid of?

My eyes scanned my living room. Gelly Roll pens? I used those a lot when I was a preteen. Halogen lamps? We had those. We had a big poster of emperor penguins in our living room, where I was beaten frequently. Are fucking penguins a subconscious trigger now? I Google “emperor penguins” and look at pictures of them waddling around the Antarctic stoically. They’re fat and cute. But I guess I feel anxious? So are they a trigger, or am I already triggered and anxious from reading the stressful trauma books? What is real?

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This line of questioning illuminates the nuanced difference between healing from traditional PTSD and complex PTSD.

If I had traditional PTSD … if, let’s say, getting hit by a car was the one foundational traumatic moment of my life, I could learn to isolate and resolve the triggers from it, potentially through exposure therapy: walking past the Krispy Kreme every day, crossing that intersection with a safe protector.

But unfortunately, I do not have one foundational trauma. I have thousands. So my anxious freakouts are not, as the books say, “temporal.” They don’t only occur when I see an angry face or someone pulls a driver out of their golf bag. My freakouts are more or less constant, a fixed state of being.

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That infinite plethora of triggers makes complex PTSD more difficult to heal from than traditional PTSD. And the way the books seem to think about it, our fixed state of being also makes us more problematic.

Complex trauma created a consistent set of defensive traits—of personality quirks—within its victims. And these were uniquely terrible even within the PTSD community. It seemed to suggest we had our own culture. Americans are individualist. Chinese people are oriented toward the good of the collective. The French are romantic and love cheese. And people with C-PTSD are drama queen self-saboteurs who are impossible to love.

I questioned whether this dark reading of the material was simply my “self-loathing” brain placing a dark lens across these scientific studies. But then again, there was that one book that described victims of early childhood trauma as “a burden to themselves and others” and “a minefield many would prefer to avoid.”

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How could I read these words about myself and not be pounded by shame? How could I not want to protect everyone from the burden of these noxious traits?

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This was the most disorienting and upsetting idea that emerged from my reading: the idea that C-PTSD was baked into my personality, that I didn’t know where my PTSD stopped and I began. If C-PTSD was a series of personality traits, then was everything about my personality toxic? Was everything about my history toxic? And would I have to throw it all away? My diagnosis called into question everything I loved—from ginseng abalone soup to talking a whole lot at parties to doodling during meetings. I couldn’t tell which parts were pathologically problematic and which were fine as they were.

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I searched the books for an answer to these questions. The books were full of how to not be a person with trauma. They listed in great detail all of our faults and failings. But to my question of how to be a person … solutions were relegated to a mere 10, maybe 30 pages in the back of the book. There’d be one happy story about an abused, underdeveloped child getting the right kind of treatment, developing resiliency, and eventually performing at the same level as his peers. It was so often a kid. Kids’ brains are more flexible and recover more quickly, the books insisted. Adults—not so much. Maybe try yoga, the books said. Some of them, like The Body Keeps the Score, suggested a number of mysterious and expensive therapies, such as EMDR and neurofeedback, but even then, experts cautioned that they were effective only a small percentage of the time.

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I’d learned that my brain is a predictable computer programmed by my experiences in childhood. One that does not divert from its code. Stimulus, response. Stimulus, response. If input X, then outcome Y. So it is. Every time.

The problem with this premise, of course, is that whereas other children had programmers who fed their brains with love and kindness, my programmers were evil. My code is flawed.

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My first instinct was to just delete the bug. Remove my terrible code from the system entirely. Briefly, ancient plans resurfaced: carbon monoxide and sleeping pills. But that would have its ramifications too. My previous efforts to heal might not have fixed me, but they had woven me into this world, sewing me emotionally and professionally into a network of lives. I had friends who cared dearly about me, mentees who looked up to me. And Joey, of course. If I cut myself out of the web, I would leave a gaping hole that would hurt all those around me. And the whole point of this endeavor was to stop hurting people.

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I guess I had to embrace the impossible. Goddamn it, what a task: I had to fight against fate itself.

State of Mind is a partnership of Slate and Arizona State University that offers a practical look at our mental health system—and how to make it better.

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