Published April 4, 2022 in nytimes.com
By Dani Blum

Nancy Méndez-Booth was diagnosed with PTSD after she delivered a stillborn baby in the winter of 2008. Within an hour after she rushed to the hospital, in labor and exhilarated, a doctor told her that the baby she had spent years planning for had no heartbeat.

When she returned home from the hospital, Ms. Méndez-Booth said she felt as though she had “arrived from Mars”; she got lost in her own apartment building. She oscillated between numbness, vivid paranoia — she worried the police would arrest her for her son’s death — and bursts of anger. Her kitchen cabinets became loose because she would bang the doors together, over and over, looking for a way to let out some of her rage.

“I would just think to myself, Who in their right mind experiences four different, incredibly intense mental states in the span of 15 minutes?” said Ms. Méndez-Booth, a writer and educator in New Jersey. She couldn’t differentiate between the past and the present; she kept flashing back to the delivery table. She thought she was experiencing a psychotic break, but later, she found out she was experiencing post-traumatic stress disorder, or PTSD.

Ms. Méndez-Booth counts herself as lucky to have gotten a diagnosis. According to experts, it is highly common for the disorder to go undetected. Pervasive misconceptions about who develops PTSD, and confusion over its complex cluster of symptoms, can prevent people with the disorder from seeking treatment — or realizing they have it at all. “You’re talking about millions” of people suffering from PTSD without a diagnosis, said Bessel van der Kolk, author of the seminal book on the subject, “The Body Keeps the Score” and a leading expert in the field of treating trauma.

PTSD entered the Diagnostic and Statistical Manual of Mental Disorders in 1980 as an official diagnosis, in response to symptoms that Vietnam War veterans were exhibiting, and today, people in combat still report high rates of the disorder. According to the U.S. Department of Veterans Affairs, between 11 and 20 percent of veterans who served in Operations Iraqi Freedom and Enduring Freedom have PTSD in a given year. As Russia continues to wage war against Ukraine and more citizens enter combat, researchers expect cases of PTSD to emerge in the coming years.

But civilians are affected by post-traumatic stress, too. The trauma most likely to cause PTSD is rape, with combat trauma as a “close second,” said Dr. Shaili Jain, a PTSD specialist at Stanford University and author of “The Unspeakable Mind.” That’s why she, along with Dr. van der Kolk and other experts say it is vital for more people to understand what PTSD really is.

Why PTSD can go untreated

Paula Schnurr, executive director of the National Center for PTSD, said about 70 percent of adults in the U.S. experience at least one traumatic event, which the Centers for Disease Control and Prevention define as an experience “marked by a sense of horror, helplessness, serious injury or the threat of serious injury or death.” But only 6 percent of the population will develop PTSD at some point in their lives, according to the Department of Veterans Affairs, the bulk of whom are women. Scientists are still trying to identify the biological and societal factors behind these discrepancies — like how generational trauma, the notion that some elements of PTSD may be passed down genetically, works, and what “complex” trauma, which is caused by repeated traumatic events, does to one’s psyche.

“When we first created this diagnosis of PTSD, we said it came from an extraordinary event outside of the range of human experience,” Dr. van der Kolk said, referring to the scientists and researchers who treat the disorder. “That’s how completely out to lunch we were — to think that trauma is exceptional.”

Vanessa Haye, 34, of East Midlands, in England, developed PTSD in the wake of an ectopic pregnancy in 2019. She rushed to the hospital for surgery nine weeks into her pregnancy; a doctor told her she might not survive. Three weeks into a painful recovery, she had to decide what to do with the remains of the pregnancy: cremation or burial. Afterward, she started experiencing debilitating flashbacks. Ms. Haye would wake just before 3 a.m. each night, reeling from nightmares, wondering what the baby would have looked like.

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Intrusive thoughts hijacked her brain; she would go for a walk with her toddler and imagine a car slamming into both of them. When her husband didn’t pick up the phone, she imagined he had died. Everything seemed like a risk. The stress was so intense that her period stopped. After six months, she went to a doctor, who told her that PTSD is common after ectopic pregnancies. Still, Ms. Haye felt disconnected from the diagnosis, shocked that it could apply to her. It took her months to start regularly seeing a therapist, and to begin piecing together a way of coping with her symptoms.

Recognizing the symptoms

Studies show that early intervention is critical for managing, and potentially preventing, PTSD. But it can take up to two years or more for people exhibiting symptoms to get a diagnosis, Dr. Jain said, and those who don’t receive treatment within the first two years have much lower odds of recovery.

“Hearing I had PTSD — it felt like I didn’t earn it,” said Natalia Chung, 30, who was diagnosed with the disorder in 2016 after ending an abusive relationship. “Because I didn’t go to war,” she said.

Many people like Ms. Chung start therapy for PTSD only after years of struggling with the disorder, straining to navigate symptoms that, with earlier treatment, may never have developed in the first place.

Part of the reason people delay treatment is because “avoidance is the hallmark of PTSD,” said Vaile Wright, the senior director of health care innovation at the American Psychological Association. The disorder hard-wires people to ignore reminders of trauma — they make their lives smaller and smaller to block out any evidence of what happened.

For Michelle DiMuria, 39, the splatter of rain against her window can trigger an episode. It was raining the day she was raped in 2015, and the weather tugs her brain back to the attack. She can’t stop picturing her attacker’s face. Since Ms. DiMuria was diagnosed with PTSD in the fall of 2017, she has struggled to avoid the snippets of everyday life that send her into a flashback: the smell of cologne, the sound of certain songs her assaulter liked. Her back broke during the assault, and she tries to avoid glancing in the mirror at the scars from surgery scattered on her skin.

Ms. DiMuria, who founded a mental health advocacy organization called the Bee Daring Foundation, wears a woven teal bracelet when she’s out in public. She’s told friends that if she starts to fidget with the fabric, she’s likely dissociating. She’s cobbled together coping mechanisms for the bad days — peanut M&M’s, Marvel movies, a coloring app. She watches football and shouts at the screen, trying to find an outlet for the surges of aggression that sometimes come with PTSD.

Emotional fluctuation is typical for people with the disorder, Dr. Wright said. “They feel like they’re going crazy,” she said. “They don’t often identify it as PTSD until, ideally, a well-trained therapist says that this is actually a really normal response to an abnormal event.”

Too few therapists receive that training, though, said Yuval Neria, director of the PTSD Research and Treatment Program at the New York State Psychiatric Institute. And the disorder is especially hard to treat because it is so often linked to other mental health concerns: addiction, depression, anxiety. Unless clinicians are specifically trained to ask about trauma, they might struggle to identify PTSD as the root issue in a patient.

“We just need to identify people quicker, get them into treatment quicker, before it becomes this horrific problem,” Dr. Jain said. “Because the reality is, this is a manageable, treatable condition.”

For all that experts don’t yet know about the disorder, the language of PTSD has become a mainstay in modern conversation. “Triggered” is a buzzword and a meme; “trauma” trends on social media.

“The Body Keeps the Score” has been on the paperback best-seller list for nearly 180 weeks in a row and has gained a fervent following. (“I’m very unsure about the impact it’s having,” Dr. van der Kolk said when asked about the book’s popularity, saying he hadn’t seen concrete actions taken because of his work — no new hearings in Congress focused on PTSD and no widespread changes to medical school curriculums.)

Some experts say this pervasiveness has diluted the meaning of PTSD. The disorder stems from severe trauma, said John Tully, a clinical associate professor in forensic psychiatry at the University of Nottingham in England. “We’re talking life-threatening or close,” he said. The term loses its meaning when people apply it too broadly, he said — and PTSD means more than wrestling with the aftermath of an upsetting event.

“When we get to the point where we talk about office stress causing PTSD, people writing nasty things about me on Twitter causing PTSD — that’s when clinicians become skeptical,” he said.

Seeking help

PTSD doesn’t always have a linear trajectory, and there’s no clear mark of recovery. For Ms. Haye, working closely with a therapist has helped her recognize and respond to her symptoms; she’s easing her way to sleeping through the night.

Traditional talk therapy isn’t the only treatment option, though. Prolonged exposure — a cognitive intervention that involves patients describing a traumatic event in precise detail — has been shown to ease PTSD symptoms in nine to 12 sessions. And emerging experimental treatments, from virtual reality therapy to controlled doses of MDMA, have shown positive results.

Digital tools can also be helpful in managing the disorder, Dr. Jain said. An app called PTSD Coach from the Department of Veterans Affairs, for example, provides information about the disorder as well as grounding exercises to help people cope with the symptoms.

Cognitive processing therapy, medications and a therapeutic technique called eye movement desensitization and reprocessing, or E.M.D.R., are also highly effective at treating the disorder, Dr. Schnurr said. E.M.D.R. sessions have helped Ms. Méndez-Booth cope with panic attacks; she still experiences paranoia, but her episodes have become less frequent as the years have passed. She lives a more full, functional life now than she thought was possible when she first exhibited symptoms.

“I know it’s still there,” she said. “It’s part of my fabric. But it’s not all of me.”