Lauren's lived experience

Lauren is 32 years old, lives in NSW and identifies as a person living with BPD.

What was your experience of receiving a diagnosis of BPD?

My experience was very positive for me because after being given a few diagnoses this one completely made sense. I had a huge rush of relief because it all made sense and once I got the diagnosis I could look into dealing with it and putting the resources in place.

What would you like people newly experienced with BPD to know?

That it’s not something you should be scared about. There is heaps of treatment out there and you can live a “normal” life. It’s just that things affect you in different ways to other people but it’s not a bad thing at all.

What did clinicians and mental health professionals do well to support you?

They gave me medications to assist me with my anxiety and moods and told me that I am going to have good days and bad days and to make sure I reach out for support.

What could clinicians and mental health professionals have done better to help you?

They could have looked into it more and assisted me when it came to suicidal ideation. It was hard to find a good GP that understood my feelings. They could have provided me with resources sooner

What kind of psychological treatments worked well for you?

CBT

What other things have supported you to live well?

I have pets, movies or tv shows, meditation and lots of self care

Do you have any tips or tricks for managing distress or strong emotions you would like to share?

Just to listen to yourself and your body. Recognise when you are feeling overwhelmed and do a body scan. Mindfulness helps me a lot and if I don’t feel up to going to a certain event or catching up with people then I just say no without feeling guilty because I am important and it’s ok. My life doesn’t have to change because of BPD it’s just a little different and I have accepted that. I’m treating it as my friend.

What advice would you give to friends/family supporting someone with a diagnosis of BPD?

To educate yourself no matter who you are. Understand what BPD is and understand how you can change the way you look at it. Be supportive, patient and aware of each other. Someone living with bpd is not defined by it, they just feel a lot more than others.

What are a few things you thought you might not have been able to do but you did anyway?!

I have a full time job and I work in mental health and get to share my experiences with other people who are or have been going through the exact same thing as me and prove that I can manage it, which I learnt by education. I am a positive role model to others

Some more thoughts:

I felt trapped and felt like giving up on everything because I didn’t feel accepted and I didn’t have control of my emotions or myself. But my diagnosis gave me overwhelming relief when I looked into what it was. Now I am creating awareness about it and get the pleasure of sharing it to other people in a positive way. The label “BPD” sounds overwhelming and sometimes the disorder is but I will forever accept it.

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

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