Are sexual abuse victims being diagnosed with a mental disorder they don't have? (The Guardian 27.3.19)

Are sexual abuse victims being diagnosed with a mental disorder they don't have? (The Guardian 27.3.19)

The Guardian newspaper (UK), Alexandra Shimo, 27/3/19

(In 2008 Andrea Nicki was wrongly diagnosed with BPD. She is seen here posing for a photograph in her home in Vancouver, B.C. on March 25, 2019.)

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 impacting 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 survivor 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 prognosis 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.

‘Little care and compassion’

Jill Greene, 57, is a survivor of sexual abuse who lives in England. (Her name was changed for anonymity.) In 1993, she was diagnosed with BPD. A psychiatrist made the assessment after a 20-minute interview and questionnaire, and the revelation of incest by her father, who began molesting her when she was four. It was a misdiagnosis, she believes. Several other medical professionals have also called it a misdiagnosis, she says, including a psychologist and psychiatric nurse.

For the past 25 years, she has been trying to have the BPD label removed from her medical charts and replaced with Complex-PTSD, but has been told it is not possible unless the original psychiatrist agrees. He refuses.

Greene’s situation is not unusual, according to Dr Laura Wood, a mental health campaigner. In North America, 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.

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
In the UK, where the DSM doesn’t apply, it is theoretically possible to change a psychiatric misdiagnosis. “But it depends on how open-minded one’s particular psychiatrist and whether they are interested in opening a dialogue with the patient,” Wood says. “If a patient has a BPD diagnosis, then medical professionals, like everyone else, are likely to assume they are ‘difficult’ and be less open to having that conversation.”

The misdiagnosis has affected Greene’s ongoing medical care. She’s been prescribed a dizzying compendium of psychotropic drugs – none of which seem to work and some of which cause side effects. She has attempted suicide several times, and feels she has been further traumatized by the mental health system.

“There is little care and compassion for me, a person who has managed to survive the most unimaginable horrors a child and adult could go through,” Greene says.

Greene has been told by a psychiatrist that she is psychotic and can’t be cured. Two years ago, when she complained about the sub-par treatment she received, she was told she lacked insight into her illness by another psychiatrist.

As a mental health advocate, she has extensively researched the psychological impact of sexual abuse. She believes trauma therapy – including a type of processing technique called Eye Movement Desensitization and Reprocessing (EMDR), available through the NHS – would be the most helpful for survivors like her. But as long as she is diagnosed with BPD, she won’t be meet the criteria to access it.

‘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, professor of psychiatry at Harvard Medical School Bessel van der Kolk and Harvard professor of psychiatry Judith Herman 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’
“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 impacted 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 Torontonian 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 she had just started seeing.

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 impacts 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 health care professionals
Once misdiagnosis occurs, a patient can face stigma from the public and health care 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 lead 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 angry 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 include 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.”

J

It is with ongoing grief and sadness that I post here that J, my partner, for whom was also a “carer” (part time, I guess), unexpectedly and suddenly passed away at the end of October last year (2018).  It was a natural cause, a cardiac arrest. I have to type this because she was often suicidal, and we always expected her to die by her own hand. I was with her and I believe she was dead by the time I gave her chest compressions and before the paramedics arrived, who then worked on her for nearly an hour.  Over the last few years she suffered more and more from physical and mobility issues.  She had excessive swelling in her legs which would leak from ulcers, very recent care from visiting nurses didn't solve the issue.  I believe her weight gain was more likely to be lymphodema (sp?) across her whole body, plus arthritic knees, it's difficult to for me say the that her obesity was due to diet or lack or “sedantry” lifestyle – I can't reconcile that she used to be anoerexic and bulimic and yet died so overweight (she would hate that I would be sharing this).  I still believe the biggest negative changes were caused by anti-psychotic medication.  Extra pills were given to prompt her thyroid, and an all too late radical change to meds was kept at a slow pace by the psychiatrist.  It's amazing that she hadn't succeeded in killing herself before now, but this is little consolation that she still died at 41.
She was a beautiful person and was buried locally in a touching ceremony.
There's so many other things I might need to share but it's difficult to stay the right side of “appropriate”.  This blog was meant as a protest against poor mental health care, I had an agenda, but mainly it was often, in subtext, about J's struggles and my need for solidarity in alienating, disempowering situations.  After cycles of numbness and acute sadness, I'm finally entering a sort of an angry phase – I step back and I see myself blaming everyone and myself for the narrative which lead to her death.  In the past I have been unable to be completely honest about the difficulties of being a carer, for fear of being unfair or hurting J, but now the wider story may never be told because it overlaps so much with her living relatives and friends.  I've been clumsy with confidentiality (this tumblr/blog overlaps with my other accounts), which means these thoughts might be read be people from J' life to whom they might be taboo.  A relative, helping to clear her flat, decided it was very important to shred her copies of medical notes – I assumed that this was regarding her history and a need to protect the rest of the family from secrets shared with MH professionals, but it's difficult to get a direct response. 

It's horrible and difficult.  I've inherited her cat.  In my own dark moments, it's clear how she kept J alive – even if it was purely “if I go, who will look after her?”.
Sorry that it took me so long to say anything about J's passing – it still feels like she died yesterday (my father also died four weeks later), but I didn't want anyone following this blog (which is mainly a news archive) to think that I was still J's carer, or partner, because she is no longer alive.

In the end, I don’t believe J stood a chance at ever having a normal life, and she certainly did not deserve the suffering, mentally and physically.  It feels horrible to try to sum up this.  I’m not sure why I’m trying.  Thank you for reading,


Stay strong.  It's all about “quality of life” (or something like that).

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Children "denied mental health support" (BBC News Health 28.5.16)

http://www.bbc.co.uk/news/education-36398247


Edit: Link to Children's Commissioner report:
http://www.childrenscommissioner.gov.uk/sites/default/files/publications/Children%27s%20Commissioner%27s%20Mental%20Health%20Lightning%20Review.pdf

Article text 11am 28th May 2016 -- BBC Health ---

Children 'denied mental health support'Thinkstock

One in 10 five-to-16 year-olds have a diagnosable mental health condition

A total of 28% of children referred for mental health support in England in 2015 were sent away without help, some after a suicide attempt, a report says.

The Children's Commissioner's review of mental health services also found that 13% with life-threatening conditions were not allowed specialist support. 

This group included children who had attempted serious self-harm and those with psychosis and anorexia nervosa.

A government spokesman said no-one should be sent away in need.

The commissioner obtained data from 48 of England's 60 child and adolescent mental health service trusts.

One trust in north-west England said it focused resources on the most severe cases. 

'Russian roulette'

There have been concerns in recent years about the patchy nature of services offered by child and adolescent mental health trusts (CAMHs), with many seemingly unable to cope with local demand.

And school teachers and heads in some areas have highlighted the growing mental health need amongst pupils which are having to be met within schools.

---

'Frightened the living daylights out of me'

Ellie Fogden, now 19, sought help when she was 16:

I did not become ill immediately at 16. For a number of years, I felt quite down, so to speak.

It was constant worrying, pressure from school, and my own body image.

I got to a point where I had had enough. I am waking up every day and I am not wanting to be here.

I self-referred to a local counselling service and I was on a waiting list for about three months and then started sessions. The counsellor was very worried and she referred me to CAMHs.

I had to go to the doctor to get a referral and it took about three to four weeks to get a session. I was in there for about three hours and I was just bombarded with so many questions. Some of them I didn't have the answer for because I didn't understand what was going on in my head.

I wasn't taken seriously enough. Some of the questions were dismissed as - it is not that bad, people have it worse. For me, it felt awful. There was no compassion which made it so much worse.

I didn't go back for another CAMHs appointment. It frightened the living daylights out of me. I finished counselling at this independent service. I wasn't great but wasn't as bad.

As I have grown older, it has just gone into a downward spiral where I am currently worse than I was when I was 16, with depression.

---

The review, by commissioner Anne Longfield, aimed to cast light on local weaknesses so provision can be improved, and more young people's needs be met.

She told BBC Radio 4's Today programme that over the past year, she had heard from a "constant stream of children, parents and professionals" about their inability to get help when they really need it.

They go to their GP who refers them to specialists, but the specialists then say their conditions are not serious enough, she said.

"There is a gap emerging between the help and support that GPs can offer and the specialist services," Ms Longfield added.

"I don't yet know quite why they are being turned away but certainly being turned away or put on a waiting list for up to six months is clearly playing Russian roulette with their health."

Missed appointments

The average waiting time for those accepted for support ranged from 14 days in a trust in north-west England to 200 days at one in the West Midlands.

More than a third of trusts, around 35%, said they would restrict access to services for children who missed appointments.

However, the report notes that children and young people are known to have difficulty in attending appointments for many reasons.

Ms Longfield said trusts have told her there was "too much demand" for their services.

"There is more awareness, more people coming forward for help," she said.

"But actually this is about recognising the terrible conditions children are in and looking at how their local systems can respond. Clearly in some parts of the country, they are doing the job much better than others".

Natasha Devon, formerly the government's mental health champion, said in order to identify problems in the early stages, it was necessary to look at the root causes.

"Anxiety, for example, is the fastest growing illness in under-21s, and we need to look at what's happening to young people - the culture and the society they live in, the pressures that are on them.

"Rather than medicalising what is actually just a response to what is happening to them, we need to look at the environment they are in."

'More compassionate'

James Morris, the Conservative MP who is chair of the all-party group on mental health, acknowledged that problems had been building up in the system over many years and a "fundamental transformation" was required.

"It is unacceptable that somebody who's suffering from a serious mental health problem should find themselves in a situation where they can't get access to care," he told the Today programme.

"We do need to move towards a more compassionate system for children and young people but the transformation is going to take time. It's going to require additional investment; it's going to require better commissioning on the ground."

An NHS England spokesman said: "While the data in this report does not substantiate the conclusions drawn, it is clearly the case that CAMHs services need to expand and the additional £1.4bn pledged will help us to do that."

A Department for Health spokesman said: "This investment is just beginning and is creating new joined up plans to improve care in the community and schools to make sure young people get support before they reach a crisis point."

Local bed made available :)

Yesterday afternoon we got a call and by evening J was admitted to one of the local wards. Despite my reservations about this particular unit, after the possibility of being sent too far from home, it feels like she’s landed on her feet. Some of the local wards have really old dorms and shared facilities, but in this ward she gets her own room with ensuite shower/loo, which helps her OCD and anxiety in general. I was pretty surprised when she arrived, they were already talking about care plans (and even wanted my input!). Naturally there’s the odd hiccup when it comes to acquiring the right medications, but hopefully this stay will have a less bumpy start than others have.


Phew.

No beds in whole of country (J's care update)

Several days in and we're still waiting for an acute care bed in hospital for J (mental health related) ... there are apparently "no beds" in the whole of the country, and a queue of outpatients in front of her. 7+ hours wait in Urgent Care (A&E, EDU at LRI) on Friday night just to see the right professional (Crisis Team) after the CPN couldn't get through on the phone to make a referral in the day. This is when you are already "in the system". 

(Leics. UK)

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