Mahlie Jewell has no problem talking about her experience of living with borderline personality disorder (BPD). But finding people willing to listen hasn’t always been easy.
“I’ve had this illness for a very long time, and I’ve been trying to talk about it for a very long time,” Mahlie explains.
“I tried to break into consumer work about five years ago, but couldn’t get anywhere. People don’t realise how incredibly stigmatised borderline is within the mental health community.”
In 2016, the tide has been slowly turning, and Mahlie has been invited to participate in half a dozen conferences and projects about BPD. They include delivering a keynote address at the 6th Annual National BPD Conference, and serving as a consumer representative on a pilot project that aims to help school students displaying signs of emerging personality disorder.
“But borderline personality disorder is still synonymous with attention seeking, with being badly behaved. We need to understand it comes from really bad trauma. And what’s wrong with attention seeking anyway? I wanted someone to notice me, and tell me I was a real person.”
Mahlie’s own mental illness has its roots in childhood and adolescent trauma, something she didn’t accept until her late 20s. She has also experienced great trauma at the hands of the mental health system, including during her first hospitalisation when she was 16 years old.
“It was involuntary. I was put in there for 7 months and spent a long time in seclusion and restraint. I was scared, but it manifested as aggression and violence. I don’t remember receiving treatment, I don’t remember much other than being pumped full of drugs. I look back and think it was useless and a waste of a year of my life. I needed many things, but the last thing I needed was to be put in hospital and tied down.”
Mahlie’s combative relationship with mental health workers continued for years, to the point where staff at her local hospital “detested me” for presenting regularly with injuries from self-harm and suicide attempts.
“I exhausted them.”
When she had a stroke at age 28 – likely the result of brain injuries caused by repeated head trauma – “no one believed me. I was in the ambulance bay for over an hour before a doctor bothered to look at me.”
Mahlie gradually got the physical health care she needed and, when sufficiently recovered, began to make drastic changes to her physical and mental health. She found a psychologist who specialised in working with people practicing severe self-harm and who had trained in Dialectical Behaviour Therapy (DBT), a treatment developed to help people with BPD.
“She anticipated my every move,” Mahlie says. “She knew what she was doing, and that made the difference.”
Many years of treatment with the psychologist and with the DBT program at Prince of Wales hospital taught Mahlie key skills including using diary cards to track her behaviour and emotion so she could recognise patterns and control her responses.
“I started to realise I had a choice to do things or not. We worked on skills based around harm minimisation, including waiting an hour to see if the desire to self-harm went down. I didn’t tell myself I couldn’t self-harm, but I would tell myself I had to wait an hour to self-harm.”
When she needs to manage feelings of anxiety or panic, Mahlie focuses her mind by naming three things she can hear, three things she can see, and three things she can smell. She will also often use the stroke test her neurologist taught her as a mindfulness exercise, saying aloud her name, the day and the name of the prime minister.
“The DBT program tried to make me close my eyes to meditate, but I will not close my eyes in a public setting or if there are other people around me. And I can’t focus on my breath because of my health anxiety. So I created my own version of mindfulness.”
Today Mahlie works as freelance designer and is studying a communication design degree. She has found support and friendship among Sydney’s vegan community since she stopped eating animal products in January 2016.
“Veganism is something that’s very important to me. I go to bed every night and can say to myself, no-one died for me today. It helps me feel more self-love. I feel lighter as a person, more connected, I go out in the world more, take my dog and go to the beach, I volunteer for the Sea Shepherd and Fin Free Sydney organisations. I’m contributing in a good way.”
In 2017, she hopes to be able to lend her lived experience to more projects that will support others with BPD.
“I know lots of people who have borderline but who can’t identify publicly. And I have lots of people come up to me after I give speeches or presentations and say in a whisper, ‘I have borderline’.
“As long as that keeps happening, I’m going to keep going.”