Carissa: My visit to Emotions Matter in New York

Carissa identifies with having recovered from BPD.  She recently returned from New York after interning for 10 days with Emotions Matter - a NFP organisation dedicated to empowerment, raising awareness and advocating for changes to the U.S. health care system for people with BPD.

Emotions Matter was formed by three women who each share a bond of experiencing a loved one with BPD and coming together to fight stigma and improve treatment. During Carissa’s visit, Emotions Matter showcased how they joined with other mental health organisations such as Brooklyn Minds, to develop a comprehensive approach to raising awareness and improving service responses to people with BPD. As the U.S. has a different system of government to Australia, organisations such as Emotions Matter are funded differently and rely on marketing themselves more actively to attract donors; recognising the strategic importance of forming strong partnerships.

Carissa met with mental health professionals, people with lived experience, and families and experienced the trip as insightful and enlightening. She met with organisations including Fountain House which uses a Recovery and social inclusion approach to address mental health, attended a ‘Recognising Women in Mental Health’ lunch organised by the Brain and Behaviour Research Foundation which provides grants to reward and develop scientific advances in mental health, and met with psychiatrist Dr Daphne Simeon, who was particularly interested in Carissa’s lived experience and is currently developing her own therapy model.

People were grateful for Carissa’s perspective and lived experience and keen to hear about her story. They were particularly keen to hear about Australia’s Peer Support Model as this currently does not exist in the U.S. Carissa shared her experiences of the mental health system in Australia and learnt that people with BPD haven’t always been treated well, some are refused hospitalisation at times due to not having insurance, and one case where a person was mechanically restrained to a bed due to self-harm. Different treatment modalities were discussed, with some organisations having preference for one modality over another, posing the question from a lived experience, as to whether preferring one treatment modality over another is effective enough.

Overall, Carissa believes Australia is more progressive in the area of mental health and treatment of people with BPD than the U.S., but that people working within the system in the U.S. are keen to learn from us and catch up.

The visit culminated in the inaugural ‘Walk for BPD’ which approx. 150 people attended and which raised $10000.The National Alliance on Mental Illness (NAMI) walk also occurred during Carissa’s visit and 5000 people from different mental health organisations came together to raise awareness and money. Carissa feels the overall community feel about mental health and awareness and the presence of mental health organisations is better in the U.S. than it is in Australia.

Now back in Western Australia, Carissa has a renewed determination and drive about advocating for people with BPD and changing the mental health care system. She feels reassured she is doing good work, excited about future opportunities, and realises that things are progressing and change is happening, ‘even though it may not seem it at the time’.

Haley: What has neuroplasticity got to do with BPD?

Slope-Point-New-Zealand-Wind-Trees-1024x611What’s your first thought when you look at these trees?

I’m guessing that it’s not that they are sick. You’re more likely to be thinking that they are growing in a unidirectional wind which accounts for their buckled shape; and you’d be right.

Throughout their lives these trees that grace Slope Point, the southernmost point of New Zealand’s South Island, are pushed by strong circumpolar winds that relentlessly grind them into a buckled and compromised submission. They continue to grow and photosynthesise, bearing fruit to beget a new generation, as all life forms must to continue their genetic line; but their capacity is compromised, they adapt to survive.

There is a cost for survival, but also a defiant beauty in these bent yet undefeated trees. Their capacity to adapt, to bend and buckle saves them from being torn out of the ground by the ferociously windy circumstances that they cannot escape from.

I think of brains as being a little like trees. Both have an intrinsic recipe for growth and development coded by genes in the DNA and both are profoundly influenced by their environment.

New shoots on trees form twigs and grow into larger more established branches over time. Similarly new neural pathways form in the brain and if they are well used, become myelinated, which makes them larger and more efficient. The way the tree’s branches are structured has a functional consequence for the tree just as the particular neural pathways that are established through experience in our unique brains (and bodies) reflect functional consequences for us.

Did you know for example that the brains of pianists are changed by what they come to excel at, playing the piano? Or that taxi drivers in London have enlarged hippocampi seemingly to accommodate learning the locations of some 25000 streets within a six-mile radius of Charing Cross station?

Experiences profoundly shape brains, actually experiences BUILD brains to get better at what we have most experience of doing and to anticipate more of the same experiences. We all know that practice makes perfect, or at least for improved performance. Repeated experiences makes us better at doing whatever it is we do over and over again and if we don’t have experiences of certain kinds, our brain just isn’t afforded the opportunity to learn from those experiences.

This is why I cannot read or speak Hebrew for example, but you may be wondering what has any of this got to do with Borderline Personality Disorder?

Neuroplasticity is the capacity that our neural systems have to change and adapt. Neuroplastic mechanisms have evolved to help us survive long enough to reproduce in our uniquely experienced environment. (Evolution functions to select any trait that helps a population to survive and reproduce). Adapting and anticipating our environment serves our survival.

We can’t help but to get better at what we are most often called upon to do in our daily lives and we also can’t help but come to anticipate having more of the kinds of experiences that we have had. Anticipating what may happen, and particularly anticipating the worst, actually helps us to survive.

Neuroplasticity then may be both the cause of, and the cure for, the constellation of struggles that are frequently named as Borderline Personality Disorder.

Consider how differently a brain might be constructed if the fabric of our relational experience is woven from warm, soothing, safe, predictable, loving, experiences, that we can come to anticipate rather than from a confusing palate of love and rejection, hostility, neglect, criticism, violence and betrayal.

Our repeated experiences of physical and or emotional danger trace out pathways of fear and avoidance or defensive aggression or perhaps dissociation that we get more practiced at, skills that we anticipate we will need in a future our brain anticipates will be similarly dangerous.

Conversely, if I have many experiences of being soothed, of emotional regulation, I am strengthening those pathways and with practice my emotional regulation improves for future where I anticipate someone may be available to help me soothe if it is too hard for me to manage alone, but to expect me to be able to emotionally regulate without having had enough practice would be like expecting me to be able to read Hebrew without ever having been taught.

Neuroplasticity offers compassion and hope. It helps us understand the struggles we have compassionately. Like these trees we may feel bent over by the winds of experiences that have shaped us but we have survived.

Neuroplasticity is also hopeful. If the winds of our experiences have shaped us to anticipate the worst we can seek out new experiences, especially perhaps of relationships. Warmer kinder winds of relational experience may confound our negative expectations, and help us come to anticipate winds that we will be able to stand straighter in without fear

The trees at Slope Point cannot pick themselves up and move to a more sheltered spot, but as the saying goes ‘If you don’t like where you are, move. You are not a tree.’

None of can see how the winds of our experiences have shaped our neural branches inside our heads but all of us can move towards experiences of kinder, warmer winds and experiences to help us anticipate, and therefore create, more benevolent futures.

Dr Haley Peckham works in Melbourne as a mental health nurse and has a PhD in molecular neuroscience, She presented at the 2018 BPD Conference.  Her presentation can be seen here

Haley's Website

Haley's Blog

 

 

James

James, 21*

Long before I was diagnosed with BPD I always had a lot of self-loathing and anxiety about not fitting in, partly due to my confusion at the time about my sexuality. Besides that, when I was 13 I was first diagnosed with depression and panic disorder and put on anti-depressants. Then, when I was 17, when the HSC [Higher School Certificate] started to get serious, I was diagnosed with OCD and medicated for that at quite a high dose. High school was really hard. I felt I had to make an impression on everybody. With my teachers I wanted to be more than just another student. I’ve always idealized people, like teachers, like therapists, my psychiatrists. I’ve had this ongoing theme of rejection and abandonment for a long time. To this day it’s what I struggle with the most.

I can come across as emotionally manipulative, particularly in relationships with friends and with potential [romantic] partners. I want too much too soon, and I get distraught at the smallest things, like people not replying to my texts, like things not going as planned. Distance is perceived as rejection. They say, ‘What’s your problem? You’re crazy, get over it!’ So it’s extremely hard to sustain any relationship. I feel like I’m never going to have a healthy relationship.

Social media is a big trigger and not a good tool for me. I have OCD as well and the accessibility that social media gives me to people, and to see what they’re doing, is dangerous. So if I don’t get a reply from someone and I know they are online I assume they’re ignoring me and I get into a spiral of self-hate and self-harming behavior, like drinking, cutting myself, or overdosing on prescription pills. These are drastic measures to numb the pain. I just can’t manage my emotions.

When I was 17 I started self-harming. Around that time I realised one cut was quite deep and needed attention. So I drove myself to a medical centre but it was closed. I broke down in the car park and called [a telephone help line]. The lady I spoke to made this cringing noise, and said she couldn’t understand how anyone could do that to themselves, that it was disgusting. So I then drove myself to Manly Hospital where I got stitches. They called my parents and told them I’d self-harmed. I’d previously hidden my behavior from my parents. So it was really hard for Dad to grasp— he was closed off to those sorts of things. But since then he’s become an amazing support; he’s learnt everything he can about BPD. But at the time they just didn’t know what they could do to help. They felt hopeless.

I’ve been admitted to psychiatric hospitals three times, in February most recently. It was in October 2015, when I started seeing a new psychiatrist, that I was diagnosed me with BPD. After the appointment I went home, looked at the nine traits of BPD in the DSM [Diagnostic and Statistical Manual of Mental Disorders] and thought I’d never read something that described my personality so perfectly. It was quite a relief and it gave me a lot of hope to see all my symptoms put into a category, to know there’s help.

In hindsight I can see some early experiences that might have given a hint of a BPD diagnosis. When I was about four or five, for instance, we had these lorikeets that would come to our house every day and we would feed them. We named them, I felt really attached to them. I loved them. As I was returning from school one day I saw a bunch of kids feeding these two birds. I can’t describe the rejection and abandonment I felt. I came home crying, and Mum asked me what was wrong, and I said I hated those birds, that I was not feeding them again, that they’d betrayed me. That would be the earliest sign I had of imagined abandonment.

After my BPD diagnosis I started DBT [Dialectical behaviour therapy]. This really drew my attention to how unhealthy my lifestyle was, for at this point I was running a café, working long hours and drinking and taking drugs. I keep choosing the destructive paths. I know what I have to do to get better but it’s not easy. But I’ve stopped the café since then and I’m trying to get into another DBT program because I’m still self-harming to numb the pain of perceived rejections. I know I need to stop drinking, using social media, and I need to start eating more healthily and exercising. I think DBT is the best thing to get me back on track.

* Name has been changed.