Rita Brown is a founding member of the Australian BPD Foundation and is the not-for-profit’s current president. In this interview, she shares her thoughts on a range of topics related to BPD.
Could you tell us more about the Australian BPD Foundation and its advocacy work?
We’re a not-for-profit charity, registered with the Australian Charities and Not-for-profits Commission. We’re dedicated to changing the prevailing, very negative attitude that surrounds BPD to one of hope and optimism by providing support, education, and advocacy for individuals with lived experience of BPD and their families, friends, partners – who I’m going to call carers for reasons of language.
Encouraging an open dialogue between people with lived experience of BPD, carers, clinicians, and researchers is very important to us as we feel by listening to and learning from one another we can create meaningful change.
In 2019, we developed a national consensus statement by, with, and for people impacted by BPD, which outlines our vision and our call on governments and elements in the service system to work together to make our vision a reality.
Those four key asks were an endorsement of a national model of care for people living with BPD, an accompanying national framework for families and carers of people with BPD, a national training framework for health professionals, and the establishment of a BPD centre of excellence or a specialist centre in each state and territory of Australia. And if the state or territory isn’t big enough to have their own, they can piggyback on one of the bigger states.
Do you believe there are significant differences between complex PTSD, developmental trauma, and BPD?
I certainly do. Whilst they’re certainly interconnected, they’re totally distinct concepts of relating to trauma and [there are] psychological differences between the three. They share some similarities, and I think it’s really important to understand what some of the differences are.
I haven’t really spoken much about trauma, but the scientific definition of trauma is the experience of an isolated event. This is slightly different to developmental trauma, which is the adverse experiences and disruptions in early childhood development that may occur. It can certainly have a profound and long-lasting impact upon the person’s psychological and emotional well-being. It’s your traumatic events, ongoing stressors, and maybe poor attachment to primary caregivers.
Whilst I acknowledge that attachment can certainly be an issue [for those with BPD], I am more and more coming to the understanding of a misattunement. There is a slight degree of mismatch between the child’s sense of truly belonging in an environment versus fitting in. There is just a mismatch for what the child innately needs, and the environment isn’t actually providing that. The child feels that they need to adapt some way of their being so that they’re accepted.
This can happen for all sorts of reasons. For example, the mum’s experiencing post-natal depression and is unable to really bond with her child. There might be some financial issues; the parents have to go to work. Maybe a family member has some form of chronic illness.
Some people have explained, “I felt like my parents never wanted me.” That’s a feeling that they have and certainly is really important to the child. But you ask the parents and they would give a totally different picture. There’s just this mismatch here.
To get a diagnosis of complex post-traumatic stress disorder, you do need to have experienced trauma as well. Complex PTSD includes the symptoms of PTSD, which are your intrusive memories, avoidance, and hyperarousal, along with difficulties with emotional regulation, self-perception, interpersonal relationships, and a negative yet usually very stable sense of identity of who they are. I’m sure you can pick up a lot of the overlapping symptoms with BPD in that description.
One of the main areas where BPD is slightly different: There isn’t a requirement for the person to have experienced trauma. About 70% have experienced trauma, which means that about 30% haven’t. And not everybody that experiences trauma goes on to develop a mental health issue, or BPD in particular.
With BPD, there tends to be a very fluctuating sense of self. So, with complex PTSD, it’s negative but stable. With BPD it is quite fluctuating. You’ve got the same challenges with emotional regulation and interpersonal relationship challenges. Also, it’s been described as “intrapersonal”, within myself, that I’m not really too sure what my values are, what I stand for. That there are times that I might feel okay with who I am, and there are other times where I have this intense feeling of self-loathing and self-hatred.
It’s not unusual for a person who has a diagnosis of BPD to also have complex PTSD or PTSD. It is complex, and I think it’s important to work with whatever resonates for the person. If the person feels that it’s due to developmental trauma, maybe not pulling that apart too much, but accepting their current understanding and working with that. And what to actually do about it now moving forward.
What do you think of BPD’s name, and do you think an alternate name would be better/less stigmatising? And what do you think of the “personality disorder” concept?
This is a very sensitive– creates a lot of very high emotions around the name and renaming it. While I acknowledge personally that borderline personality disorder (and “personality disorder”) is a horrible name, and I don’t particularly like it, I think it is really important, rather than changing the name, to be changing the way people understand it. Because one of my concerns is that if we change it, there’s lots of issues around changing the name.
But sooner or later, the stigma and discrimination that is currently surrounding “BPD”, because it causes such high emotional reaction in, I’ll say caregivers, so I include health professionals in that, that I think that stigma and discrimination will transfer over to the new name.
And a lot of the names that have been suggested such as emotionally unstable personality disorder [EUPD], to my mind, I don’t think that I’d like to be diagnosed as being emotionally unstable. I actually don’t think that’s any better than BPD.
That’s why at this stage we’re very much aiming to change the narrative around BPD, helping people to gain an awareness and understanding that this is a person in distress. And that BPD or borderline personality disorder is purely a label.
We have a mental illness that’s called depression, and that [name] gives us an idea of what depression is, and likewise with anxiety. But we also have conditions like Alzheimer’s, for example, that really doesn’t describe the set of experiences that someone with Alzheimer’s has. That to me is probably more important, to just be changing people’s perceptions.
Of course, self-stigma I can understand can have a play here. And you see “personality disorder” so you think you’ve got a broken personality. However, we know that’s not correct. We all have got a personality, and it’s just that for people who have this thing called a “personality disorder”, it’s just characterised by enduring patterns of thoughts, emotions, and behaviours which are different from the cultural norms and expectations. And they tend to be prevalent most of the time if not all the time, and have a real impact upon the person’s well-being.
It’s not a disordered personality, but it’s a difference to what the cultural norm is. And it’s not something that will just go away by itself; it’s something that needs some treatment.
The ICD-11 has got more of a dimensional way of diagnosing personality disorders. It is really important to consider the social and cultural factors in understanding human behaviours and distress. There is a lot of discussion around the symptoms of mental health issues. Particularly, BPD may actually be an adaptive response to adverse life experiences or societal pressures. So, is that really then a “disorder”? I can’t really answer the question, but these are some of the thoughts that are going on.
As far as changing the name, it really needs to be a coordinated approach, so that everybody knows what’s happening and is brought along for the journey. I’ve heard of situations where the diagnosis has been changed to EUPD, someone has been discharged from hospital with EUPD to another service, and they just haven’t known how to support the person. Because they knew what BPD was but didn’t know EUPD.
The foundation has been considering for a while changing its name to be more reflective of that dimensional approach. We actually got quite a strong pushback from people with BPD. They were arguing that: “I identify with BPD. I’ve had it for ten years. I’ve been getting treatment for BPD for ten years. Are you gonna say that what I’ve really been getting treatment for doesn’t exist?” So, it’s really nuanced.
What new research into BPD do you find the most interesting?
I really find the neurobiology and the genetics [to be interesting], where scientists have been looking at the neural, biological, and the genetic underpinnings of BPD to better understand that biological basis. Looking at the brain structure, which parts of the brain get activated with certain experiences, the neurotransmitter systems, and any genetic markers that may be associated with BPD.
Another thing that – because I’m actually a carer, so I come into this space and I work as a lived experience carer, this is a volunteer role – that’s around peer support and lived experience really informing services, clinicians, as to what’s helpful and unhelpful.
Working now in a clinical service for over six and a half years, just the really gradual change in the clinicians’ attitudes. And from being asked when I first started, “Aren’t carers part of the problem?”, there’s been a considerable shift. There’s a much greater awareness of working with the person. And actually listening to and validating what they’re saying.
I guess I can say for most of the clinicians, there’s less of an expert’s stance, us versus them. There seems to be a greater understanding in the therapeutic space that you’ve got two experts. You’ve got the clinician with the piece of paper, and you’ve got the person with BPD who has their own lived experience expertise. And how do we best work together?
And the work for peers on recovery. I’ve certainly seen with carers, a clinician could say something to me, and I would think you’ve got no understanding of what I’m talking about. A carer could say the same thing to me, and because we’ve got that kinship experience I’m more likely to take notice of them. They’ve done it! I can give it a try too.
What would you like healthcare providers to know when treating people with BPD?
It’s really important to establish a clear diagnosis of BPD. And not just telling the person, “I think you’ve got BPD. Go home and look it up on the internet.” Which happens! Rather, they sit down and discuss with the person the various challenges they’ve got in life, and see how the diagnosis resonates for them. Because it may not resonate for you.
Just as an example: One of those DSM criteria is real or perceived fear of abandonment. One person I’ve worked with said, “Well, that one doesn’t resonate with me at all.” And I said, “Okay, well it certainly resonates with me from the carer experience.” So, we were able to have this conversation, and she said, “I don’t really fear abandonment. But I fear being left alone to manage some emotions that are quite intolerable.” The perception is the same, but it’s a totally different understanding. And I’m not feeling nearly as resentful of that perceived fear of abandonment.
It’s important that clinicians provide some psychoeducation to the patient and the family. They need to create a safe therapeutic space. So, ideally, be trauma-informed, but not necessarily pulling apart the trauma or trying to dig into what that trauma is. Need to be compassionate, and have consistent and clear boundaries.
I think they need to understand the chronic risk versus the acute risk. Understanding that many people with BPD, they’ll feel suicidal most if not all the time. And that’s actually a coping mechanism. Responding with a bit of a knee-jerk reaction to statements of suicide can be really, really unhelpful.
They need to be able to hold some hope, realistic hope for the person. Even when the person is unable to hold that for themselves. But I think that for the person to know that someone is holding hope for them is really important.
A collaborative approach is really important – be working with the person. To be trying to find out what is helpful in times of crisis. And to develop an outline of a treatment plan, a well-being plan, so that you’ve got some structure to fall back on. That can be a bit of a safety net when things start to feel a bit overwhelming.
It’s really important for clinicians to work to repair any ruptures in the therapeutic relationship. We all have challenging interpersonal relationships at times, and it’s important for the clinician to work through that to move forward.
Besides DBT, what other therapies or therapeutic activities have you noticed are helpful for those with BPD?
There are four main therapies. There’s MBT, Mentalization-Based Therapy. We’ve got schema-focused therapy. And we’ve got what’s known as good psychological management [GPM].
So, [GPM’s] a structured therapy that pulls apart what we know works in the main therapies and combines it into a structure that pretty well any health professional can learn. And it doesn’t require the intensive study and the cost of doing a specialist therapy like DBT.
Ideally, if clinicians have got that skillset – and that was pretty well what we rolled out in our national training strategy – every engagement the clinician has with the person with BPD can be therapeutic, whether it’s a therapy session or a conversation in the emergency department. Working to validate, the key structures around that.
As well, there’s increasing evidence that contact with peers is helpful. I’m thinking of Alternatives to Suicide, which is a peer-based group that meets in person and online for people feeling at risk of suicide. They’re trained peers. It’s a space where people can speak openly, and they need to be taking some responsibility for themselves.
And meaningful activity, whatever adds meaning to your life. Having a purpose to get out of bed. That could be the Men’s Shed, that could be going to a community centre, doing an art class.
Of course, your main health, your exercise, good sleep hygiene, and eating healthy food can all help as well. So, it’s just a combination of things. Plus, yoga, art therapy, music therapy. Which can be very difficult when you’re feeling unwell, to be thinking of those things. They really hold a stabilising influence in a person’s life.
Monique Moate is a writer, editor, wife, cat mum, and night owl who enjoys writing about a wide range of topics. She cares about mental health awareness and destigmatisation.