For most Canberrans, Black Summer was intense and stressful, but for the estimated two to five percent of ACT residents with Borderline Personality Disorder (BPD), it was a triggering event.
The founder of Canberra’s only BPD specific treatment provider, Natalie (Nat) Malcolmson, whose connection to BPD is extremely close to home, recognised that “her tribe” was stressed by the fires and smoke and welcomed them to her Belconnen home.
“I kept hearing from people in the group about how anxious they all were,” Nat said.
“They just wanted to do something but didn’t know what. They were beating themselves up.”
To ease their distress, Nat created a self-sensory kit making workshop that married two therapeutic skills: distress tolerance – the act of distracting yourself from your emotional state by helping other people; and sensory self-soothing – common for people with BPD to carry with them to prevent overwhelming stress by appeasing the five senses.
Self-sensory kits can be made up of almost anything; examples are fluffy toys or stress balls for touch, a colouring book for mindfulness, calming essential oils to smell, a teabag or chocolate to taste, glitter jars or pictures of a loved one to look at, and meditation apps to listen to.
The group walked around Nat’s home in circles, putting together bundles and coupling them with a personalised card.
Nat also used her connections within the NDIS network to distribute kits to the NSW South Coast.
The circle was complete when one of Nat’s coastal-based participants received a package.
What is Borderline Personality Disorder?
More common than schizophrenia and bipolar, Borderline Personality Disorder is not well known or understood, and statistics show it is one of the most stigmatised mental health conditions, with people with BPD often described as “manipulative”.
“It’s not manipulation in the definition sense. It’s people trying to get their needs met and not knowing how,” Nat said.
“I take my hat of the people with BPD, they are the most amazing warriors.
“How do you get up and function every single day when your own brain is telling you that you’re worthless and should be dead?
“And yet they get up every single day. I don’t know that I could do that.”
Caused by an invalidating early childhood and genetic pre-disposition to emotional sensitivity, there are around 256 different combinations of BPD traits.
Among them: a real or perceived fear of abandonment, paranoia, suicidal thoughts or attempts, black and white thinking, impulsivity, and a pattern of intense, unstable relationships.
A person must have at least five of these traits to be diagnosed.
On average, it takes eight years of symptoms for a diagnosis.
Nat said BPD was an umbrella term but what tied every one of her participants together was the belief they were worthless and did not deserve happiness or even to be alive.
An estimated 10% of people with BPD die by suicide, a rate 50 times higher than the general population.
Nat said it doesn’t have to be that way. BPD is extremely treatable; so treatable she wants to know why treatment isn’t handed out at Belconnen Mall.
Dialectical Behaviour Therapy (DBT)
Created by Dr Marsha Linehan in the 1980s, Dialectical Behaviour Therapy (DBT) is a mix of mindfulness and cognitive behavioural therapy, delivered in four modules: Mindfulness, Interpersonal Effectiveness, Distress Tolerance and Emotional Regulation.
Foundational to treating BPD, patients must be both validated and challenged at the same time; they must believe they are enough and loveable just as they are, and they will be happier and healthier with behavioural change.
DBT was developed by Dr Linehan after her own experience in a mental institution in 1961.
She was mis-diagnosed with schizophrenia, heavily medicated, given electroshock therapy and secluded from the general ward due to self-harm and suicidal behaviour.
Dr Linehan said when she left the hospital two years later, she was no better. It wasn’t until 2011 that she revealed her own diagnosis, blaming stigma about the condition for the decades of secrecy.
Her program is so effective that after five years, 85% of participants no longer meet the BPD criteria.
Nat trained with Dr Linehan in 2016
In 2014, Nat took a redundancy from the public service to care for her husband Todd, who has a lived experience of BPD.
Before his diagnosis, Todd had been engaged in the mental health system for 15 years. Nat said he had been written off by the system as an alcoholic.
Their relationship was rocky, and they attended marriage counselling.
“We were in a cycle. It would be okay for a while and then, bang! It wasn’t.”
Nat said the cruellest thing about BPD is the way it affects and destroys relationships.
But Nat and Todd bucked that trend; rather than running from the difficulties of caring, Nat fully immersed herself in the Borderline world.
She found a Facebook support group for the families of loved ones with BPD.
Before long, Nat was a volunteer leader of a 12-week family connections program to help families understand BPD behaviour and support their loved ones.
The program was written by professors at Harvard University and brought to Australia by the National Education Alliance of BPD.
Nat took her leadership further and spent her last $2,000 on a clinician’s training course that required four trips to Melbourne.
While she could afford to fly to the first session, by the fourth, she was on a bus and staying at a backpackers’ hostel.
Building a community for BPD
Nat then developed a peer-support model of DBT and began holding group therapy classes. She started with two groups of 10 people.
Four years later, Nat convenes five groups of 20 people and is devastated to turn away another five people a week.
Her program is helping to keep people out of the mental health system.
Before Casey joined Nat’s group in 2016, she was in emergency nearly every week; now Casey has gone eight months without hospitalisation.
Another member of Nat’s group micro-doses on underground psychedelic mushroom treatment for his mental health. On one occasion he took too many mushrooms and started hallucinating.
He told Nat, in that moment, he heard her voice in his head saying over and over, “thoughts aren’t facts, thoughts aren’t facts” and it grounded him.
Nat teaches a skill where people use temperature changes and icepacks to control escalating emotional pain, and when she introduces the skills to her participants, she can see the scepticism on their faces.
“You can tell they’re thinking, ‘Ice – what’s that going to do? She doesn’t know how bad I get’. But then they find it actually works.”
Nat said it’s the incremental change in her participants that she most loves.
“By week six, they come up to me and say ‘Nat, I’m starting to change’,” she said.