In medicine, a diagnosis is (generally) a helpful thing. It communicates information, allows us to learn what can be expected and directs us to the most effective treatment. But when stigma is attached to the diagnosis and there is limited access to treatment, it can become a point of tension among clinicians, leading many to shy away from it. This is the story of borderline personality disorder.
In a nutshell, borderline personality disorder (BPD) is a constellation of symptoms we see on the surface – intense mood changes and anger outbursts; impulsivity; intense relationships with others; self-harm and suicidality; dissociations or paranoia at times of stress – that accompany a deep and painful inner experience with fears of abandonment, trouble with sense of self and identity, and feeling “empty” inside. It is heritable at 55 per cent, and is equally prevalent in men and women, though women more often seek care for it in clinical settings.
Michèle Langlois, now president of Ottawa Network for Borderline Personality Disorder (ON-BPD), a volunteer-run charitable organization, remembers when her daughter was “caught in the middle” of a system that was not able to respond to her calls for help as her daughter suffered through years of self-harm and overdoses, police and ambulance calls to the home, and frequent visits to various hospital emergency departments. She recalls feeling “downtrodden” as a mother, having “exhausted all the tools in my toolkit.” At her lowest point, she says her daughter was “a case that (clinicians) had considered hopeless.”
Upon learning about BPD, Michèle felt equipped to do her own research and influence the course of her daughter’s path. She signed up for a 12-week course called Family Connections that provides skills and peer support for families or loved ones of individuals with BPD traits or emotional dysregulation. Michèle also was able to connect her daughter to weekly psychological therapy that she had to pay for privately since it was unavailable in the public system (after thoroughly filtering through a photocopied list of 20+ organizations she was provided with, most of which no longer existed).
Today, she enjoys a meaningful relationship with her daughter, who is “thriving and flourishing,” succeeding at work, and enjoying healthy and mature relationships.
Michèle’s story is encouraging, yet serious system questions remain: Why is there no accessible, publicly funded treatment for a condition that affects between one and six per cent of the population – such that emergency departments become the only place to go, and only someone with financial resources can access care in private settings? And how is a condition that is present in six per cent of primary care settings, 10 per cent of outpatient mental health clinics, and 20 per cent of all psychiatric inpatients, with a suicide rate between three per cent and 10 per cent, not a high priority when it comes to funding and program creation?
The answer may lie in the fact that a disorder that came to be labeled as “difficult” and “untreatable” can stigmatize patients and increase barriers for care. Many clinicians know that a diagnosis may add challenges to a patient’s experiences of the health-care system, and thus shy away from it. Yet without a clear diagnosis, the cycle continues – no diagnosis means no urgency to fund or prioritize treatment, and no access to treatment means more hesitancy to diagnose it.
So, let’s unpack this.
Michèle’s experience debunks the myth that a diagnosis of borderline personality disorder is a life sentence. Data shows that within two years of receiving the diagnosis, 50 per cent of patients no longer meet the criteria for it – and within 10 years, 85 per cent of patients no longer meet the criteria, with only approximately 15 per cent relapsing after remission.
But while the statistics are promising, BPD continues to cause significant suffering, and early intervention remains necessary. Deanna Mercer, a psychiatrist who has spent a majority of her career working with patients with BPD, explains that since the peak of the illness often happens when people are trying to find work or start a family, waiting for symptoms to improve on their own has negative long-term outcomes, making it difficult to build a life after years of emotional instability and struggling to cope.
And here again is another piece of good news – a Cochrane review published in 2020 looking at psychological therapies for BPD showed improved outcomes for symptom severity, self-harm, suicidality, and psychosocial functioning – though more research is needed.
So, we have a treatable disorder with a (cautiously) optimistic prognosis. So, why is it still hard to get a diagnosis and access treatment?
Historically, effective treatment has been unavailable because it had not yet been clearly established. In what is generally credited as the first published article on BPD in 1938, psychoanalyst Adolph Stern describes this group of “borderline” patients as “extremely difficult to handle effectively by any psychotherapeutic method.” Over time, “borderline” became synonymous with “difficult,” and a generation of clinicians was trained under the assumption that there is no clear path to recovery. And so, rather than a neutral, descriptive diagnosis, it became a loaded and controversial term – labeled by a Time Magazine cover story in 2009 as “a wastebasket of hostility” and a label given to patients “hated” by their clinicians.
A lot has happened since 1938, and yet some of those beliefs have held. In the 1980s and 1990s, Marsha Linehan – a psychologist who shared her own story of BPD with the New York Times of having spent more than 26 months in hospital with a (mis)diagnosis of schizophrenia, receiving electroconvulsive therapy (ECT) and medications while being described as “one of the most disturbed patients in the hospital”– developed dialectical behavioral therapy (DBT), an effective treatment that is still the most studied psychotherapy for BPD. Though hopeful, this revolutionary manualized treatment is limited by the substantial amount of time and resources it requires. Research in the past 20 years has shown that most patients with BPD do not require intensive and lengthy specialized treatments to get better; some basic principles of care outlined in the Handbook of Good Psychiatric Management for Borderline Personality Disorder were found to be “good enough” for most patients, with few requiring more intensive treatment like DBT or another well-studied therapy called mentalization based therapy (MBT) among other options.
However, challenges persist. There are concerns that a diagnosis of BPD puts unwarranted blame on patients for abuse or neglect they may have experienced (given that trauma is a risk factor for developing BPD) or for having a higher-than-average need for attachment in an environment unable to provide it.
Theoretical criticisms of the reliability and validity of the diagnosis continue to persist despite evidence that the diagnosis itself is “very robust,” says Mercer. In fact, “borderline pattern” is now the only personality disorder specifier retained by the World Health Organization (WHO) in its most recent International Classification of Diseases (ICD 11).
Within the medical system, a BPD diagnosis often is avoided since there continues to be a deeply entrenched belief that patients with BPD can never benefit from hospital admission when the reality is more nuanced. And there is concern that a diagnosis written once on a patient’s chart can be present for life rather than re-assessed at various intervals.
The more we avoid this diagnosis altogether, the more the stigma worsens.
However, the more we avoid this diagnosis altogether, the more the stigma worsens. Since the diagnosis is reserved only for those with the most severe illness, we miss opportunities to connect patients with less severe cases to the care they need; to connect the families to supports and to provide psychoeducation that both validates the patient’s struggles and shifts the conversation (“it makes perfect sense that you are struggling AND here are the things that will help you get better”).
Heidi King, a psychiatrist working in the Montfort Hospital’s BPD program, says “one of the biggest barriers is that (providers) have misinformation and also certain negative attitudes that can develop in treating patients with borderline personality disorder” because of the difficult behaviours exhibited by some patients with BPD. But these behaviours are symptoms of the illness, and when viewed as such, can increase empathy.
Many providers’ experiences with BPD happen only on “nights and weekends” during on-call hours in the emergency department, limiting their exposure to patients who are at the height of an active crisis. But, says King, clinicians who have received adequate training and feel supported are effective and find satisfaction and fulfillment in their work: “We’re very happy doing what we do. If we weren’t happy, we wouldn’t do it.”
The Montfort Hospital in Ottawa – a teaching hospital that is the only Francophone academic health-care institution west of Quebec – is one hospital that has taken ownership of the issue and has established a stepped-care model tailored to patients with BPD, accessible for referral by both psychiatrists and family physicians. The program has participants starting with 12 weeks of group therapy that combines psychoeducation, DBT skills and principles of Good Psychiatric Management. Patients who require further treatment are then assisted in finding community resources or are referred to one of two more specialized therapies – DBT or MBT.
The program has participants starting with 12 weeks of group therapy that combines psychoeducation with principles of Good Psychiatric Management. Patients who require further treatment are then assisted in finding community resources or are referred to one of two more specialized therapies – a full DBT program or MBT.
The program received funding from the province’s ministry of health, and its success has led to requests for education for other providers and departments in the hospital. Says King: “I see so many people get better – it keeps that motivation going. I know people improve because I see it, and I keep doing the work because of that.”
The Montfort example shows this issue must be addressed as a “systems” issue rather than an individual provider issue. But scaling up to provide services for a larger population may have its own challenges, including fears of becoming overwhelmed with demand. As Mercer explains, there is a recognition that building infrastructure to provide treatment on a larger scale will require a lot of resources. Approaches such as the multi-level “stepped-care model” would improve our ability to deliver services more broadly. This could include community organizations providing patients with a 12-week skills training course called “Working with Emotions,” combined with some general psychiatric management and supported by larger regional players offering patients requiring more care specialized treatments such as DBT, MBT or intensive case management.
For Michèle, “witnessing the transformative impacts of the (Family Connections) course on the lives of all these people that we were working with was for me a life-changing experience” – so much so that it altered her entire career goals.
“A lot of the suffering that my daughter experienced and that I experienced could have been avoidable, had early on, it been clear to me of what we were dealing with and what needed to happen in the family system to course correct,” she says.
Psychoeducation targeting both the public as well as service providers can begin to dispel myths, change attitudes and increase empathy.
Psychoeducation can also help clarify that BPD is an umbrella term that covers people of many different walks of life and levels of illness – from the person working full time and in a relatively stable (yet distressing) relationship to the one whose illness interferes with basic tasks of life (without supports such as housing or employment); from one who has lived through serious trauma to one who had a relatively uneventful upbringing; from one with frequent and dangerous suicide attempts to one who has no history of self-harm and suicidality. Needs will be different, and management must be targeted to those needs.
“For me, the biggest drive to do this work is that we’re not advocating for something that we don’t know what it is yet – we know what works, we know what treatments work, we know what support is needed for service providers to be effective,” says Michèle.
Faced with our current system, we can acknowledge our shortcomings while striving to return the diagnosis of BPD to a “neutral” and “descriptive” name for a constellation of symptoms without the existing stigma and controversy. A sad reality of the current system is that some of the difficulties that are inherent to BPD (e.g., feeling invalidated, dismissed, abandoned, or rejected) are relived when navigating the system. When people feel “held” and “connected,” learning and growth can occur more optimally.
As King explains, “many of the patients we work with have beautiful qualities, lots of energy, and lots of motivation to improve things. For us, it’s like a gift to be able to do what we do.”
And the best part is that treating one person creates a ripple effect, impacting the relationships around them – children and partners – and breaking a cycle for the next generation.