The lack of recognition for complex PTSD by the psychiatric establishment means it is difficult for sexual abuse victims who might suffer from it to receive the right diagnosis

Suppose, for the sake of a thought experiment, that a new psychological disorder was discovered. It is supported by dozens of studies and recognized by some of the world’s leading psychiatrists and psychologists, but not by the North American psychiatric establishment. And let’s say the refusal to accept this new disorder had devastating consequences for #MeToo survivors.

That claim is asserted by a growing number of sexual abuse victims, psychiatrists and psychologists worldwide.

The disorder is called complex PTSD. It was identified in 1990 by American psychiatrists studying the experiences, behavior and symptoms of sexual abuse victims and other patients who have experienced extreme trauma and neglect, usually at a young age. A decade later, new science – in the form of brain scans – revealed this was a distinct condition affecting certain areas of the brain.

While the condition is referenced and discussed in peer-reviewed publications, North America’s official bible of psychiatry – The Diagnostic and Statistical Manual (DSM) – doesn’t recognize its existence. The DSM determines how mental illness is defined, and is the key to insurance coverage, special services in schools, disability benefits and treatments.

Someone who is dealing with complex trauma will be told they are having a problem regulating their emotions Sly Sarkisova, psychotherapist

This lack of recognition means it is difficult for sexual abuse victims who might suffer from it to receive the right psychological diagnosis.

Rather than being diagnosed with complex PTSD, many will be misdiagnosed with borderline personality disorder (BPD), says Sly Sarkisova, a Toronto-based psychotherapist who specializes in trauma.

BPD and complex PTSD are different disorders, but have similar symptoms. But one major indicator sets them apart: the latest research shows that BPD is 55% inherited whereas complex PTSD is not caused by genetics but prolonged exposure to traumatic events, usually in childhood. While BPD is defined primarily by risk-taking symptoms (such as suicidality, impulsivity, self-harm, anxiety, emptiness, difficulty with relationships, and extremes of volatile emotion), complex PTSD patients tend to be less impulsive, frantic, unstable and less likely to engage in self-harm, according to a 2014 study in the European Journal of Psychotraumatology.

This misdiagnosis affects sexual survivors more than anyone else because they commonly display the psychiatric symptoms common to both disorders, such as anxiety, mood swings, depression, emptiness and displaced anger. As a result, “Someone who is dealing with complex trauma will be told that they are having a problem regulating their emotions,” Sarkisova explains.

This means that sexual abuse victims have to wrestle with receiving a BPD diagnosis that is pejorative and stigmatising (they are told their personality is “disordered”; they are called “difficult”; and as the condition can’t be cured, some psychologists avoid treating them.)

“The borderline diagnosis for sexual abuse survivors is nonsense and misleading because it suggests that the problem is within the personality of the survivor rather than a result of what has happened to them,” explains Gillian Proctor, program leader of the psychotherapy and counselling master’s program at the University of Leeds and a clinical psychologist in private practice.

For others, it’s political. BPD has become associated with a “parody of supposed feminine characteristics”, explains Glyn Lewis, the head of psychiatry at University College London. “BPD is a label that is often misused and applied especially to women, or people who were assigned female at birth, to pathologize them for emotional expressions of suffering,” Sarkisova says.

There is little hope of re-diagnosis with complex PTSD because therapists are reluctant to diagnose patients with a condition that isn’t recognized by the DSM

‘It was sexist’

Concerns about the misdiagnosis of sexual abuse victims surfaced early on. BPD was added to the DSM in 1980, and to the UK’s International Classification of Diseases (ICD) in 1996.

As these changes were happening, Bessel van der Kolk, a professor of psychiatry at Harvard Medical School, and Judith Herman, a Harvard professor of psychiatry, began to wonder if the developments were correct. What if these patients didn’t have disordered personalities, but were suffering the psychological consequences of childhood abuse?

They began to interview male and female patients with a BPD diagnosis and published their findings in 1989 in the American Journal of Psychiatry. Their hunch proved right: 81% of patients diagnosed with BPD reported severe child abuse, including sexual, and/or neglect, usually before the age of seven. Van der Kolk and his team proposed that these people be re-diagnosed as having complex PTSD.

For this to happen, the American Psychiatric Association would have to add complex PTSD as a new diagnostic category to the DSM. Van der Kolk and his team travelled to New York in 1990 to present their case to Robert Spitzer, one of the founders of the DSM and professor of psychiatry at Columbia University. Victory seemed in sight: in 1993, the American Psychiatric Association’s PTSD committee voted to accept Van der Kolk’s changes and add complex PTSD to the next version of the DSM.

Twenty-six years later, nothing has happened.

Our field was dominated by men, and the men were seeing these women as ‘difficult' Katherine Porterfield

“It was sexist,” argues New York-based Katherine Porterfield, a child psychologist at New York University’s Medical School. “Yes, this was happening to women because they are more likely to be abused, but it was also because our field was dominated by men, and the men were seeing these women as ‘difficult’.”

Those attitudes may have affected the science: many are reluctant to further explore a psychological condition that isn’t recognized in North America, explains Audrey Cook, a Vancouver-based family therapist who has worked with sexual abuse victims since 1994, so instead these patients are labelled “difficult to treat”. Without research money, there are no studies on complex PTSD cure rates or most effective treatments.

Dr Van der Kolk, who went on to become one of the world’s leading trauma experts and the author of the New York Times bestseller, The Body Keeps the Score: Brain, Mind, and Body in the Healing of Trauma, says that misdiagnosis is now the norm. “The diagnosis determines the treatment that you can get, what insurance companies will pay for,” he explains. “As long as complex PTSD does not exist, [medical] insurance companies will not reimburse you for [psychological] treatments that might work.” Instead, he argues, “patients are likely to receive pejorative diagnoses and labels that make their lives only more difficult”.

‘It’s easier for the world to flush us down the toilet’

“It’s powerfully and deeply ironic to me that women who experience profound trauma [ie sexual abuse] are pathologised as having a personality disorder,” explains Winnipeg-based freelance journalist, artist and resilience coach Lisa Walter, 50, a sexual abuse victim who says she has been misdiagnosed with BPD. “I think it makes it easier for the world to flush us down the toilet.”

Historically, a BPD diagnosis was made if women were considered resistant to treatment and on the “borderline” of psychotic. Later, the incurable part of the disorder was explained through genetics. Although the modern-day definition does not mention psychopathy or sociopathy – which are different psychological disorders – the term is still used by some therapists and the public to imply someone irrational, inconsiderate and beyond control.

However, psychiatrists and psychologists in UK and North America are divided on the BPD diagnosis question. Some, like Dr Proctor, believe the label is never helpful, especially for sexual abuse victims who she believes are actually suffering from complex PTSD. Others, such as Dr Choi-Kain, director of the Massachusetts-based McLean Hospital Borderline Personality Disorder Training Institute, believe they are separate conditions: comorbid, yes, but a person can suffer from both.

“When you tell [BPD patients]: ‘this is something millions of people have; you are not alone; there are good treatments and outcomes’; it’s a really positive, clinical message,” Dr Choi-Kain says.

But because studies have linked BPD to increased criminality, it has meant that some sexual abuse survivors won’t disclose what has really happened to them to mental health professionals for fear of being diagnosed with it.

For a long time, Andrea Nicki hid that she was sexually abused as a young child by an adult male family member. “Normally I’m reluctant to talk about sexual abuse because as soon as you say it, people think BPD,” explains Nicki. “They think she’s unstable, she’s got a personality disorder.” Then, in 2008, the Vancouver-based poet and business ethics professor revealed it to a psychiatrist, whom she just saw once.

He diagnosed her with BPD even though she did not fit the BPD psychological profile: she lacked most of its symptoms except anxiety and minor depression due largely to financial troubles. A misplaced laugh (when her psychiatrist said “I really care for you”) might have tipped the balance: it prompted him to write down she was emotionally volatile.

‘Stuck in individualising, pathologising diagnostic ghettos’

A number of scientific developments have improved the understanding of complex PTSD. Thanks to growing interest and funding for neuroscience and neurobiology, there has been an explosion of scientific imaging tools, such as Functional magnetic resonance imaging and electroencephalography, that have allowed scientists to peer inside the brains of complex PTSD patients. The scans have allowed scientists to determine which parts of the brain are impacted by prolonged trauma, an advancement useful to trauma therapists hoping for possible cures.

Still, misdiagnosis remains common and affects the success rate of psychological treatments, according to Van der Kolk. Complex PTSD usually requires different treatments from those given to patients with BPD. Sexual abuse should be treated with some form of trauma-related therapy, Van der Kolk says, while BPD requires learning to control one’s aggressive urges, improve one’s relationship with others, moderate difficult emotions and compulsive behaviours.

Once misdiagnosis occurs, a patient can face stigma from the public and healthcare professionals

Once misdiagnosis occurs, a patient can face stigma from the public and healthcare professionals. In a 2015 study in British Journal of Clinical Psychology, an actor was videotaped having a panic attack. When doctors were told she had BPD (she didn’t), they rated her problem as worse and gave her less hope for recovery.

Lisa Walter, the Toronto writer, was diagnosed with BPD in 2008 after going through a depression and a period of self-harm. She too is a survivor, molested by a neighbour at eight and raped at 21. After diagnosis, she researched the condition, and found some of the symptoms did not fit. Her psychiatrist downplayed her concerns, and told her not to protest, because the BPD diagnosis was the only way of accessing a free, six-month course combining several therapies.

But with the BPD diagnosis on her medical chart, medical professionals approached her differently, she said. Nurses seemed less compassionate when she self-harmed. An ER doctor appeared irritated by the diagnosis and attempted to stitch up a self-inflicted leg wound without an anesthetic.

Her BPD diagnosis also led to dismissive treatment away from medical situations. While giving witness testimony in a case alleging police brutality at the 2010 G20 Toronto summit, the defense lawyer used the BPD diagnosis to humiliate her, holding open a book of mental health disorders and suggesting that because she had it, she had behaved irrationally angrily and aggressively at the protest. (She later sued the police and they settled.)

“As soon as you say BPD, people think irrational, angry woman,” Walter says. “There are extremely negative connotations with that phrase.”

In the UK, the situation is changing, albeit slowly. Last year, the National Health Service formally recognized complex PTSD as a psychological condition. Preliminary versions of the UK’s bible of psychiatry, the ICD-11, also includes it and most expect the final version, scheduled for publication in 2022, to do the same.

However, some UK therapists are still skeptical. “The new ICD-11 diagnosis of complex PTSD was expected to revolutionise how we see and treat patients,” explains Dr Jay Watts, a clinical psychologist who has written extensively about Complex PTSD. It does not, she says: the diagnostic criteria are “so limited” that most people who have Complex PTSD will not qualify and instead be “stuck in individualising, pathologising diagnostic ghettos”.

In North America, there are still no plans to include complex PTSD in the DSM. Research into effective cures for sexual abuse survivors and other complex PTSD patients remain stymied by the institutional rigidity, misdiagnosis and lack of funding.

“Survivors of trauma and sexual violence should get appropriate support,” Wood says. “They should be treated with care and respect, not shamed and stigmatised further by this dehumanising label.”

• This article was amended on 27 and 29 March 2019. An earlier version misattributed a quote, and some personal details were removed.