Mahlie Jewell: People with borderline personality disorder, friends of mine, are the most loving and supportive, kind and compassionate people I've ever known, it's just that we struggle to do that behaviour for ourselves.

Sathya Rao: It's as though people with borderline personality disorder are driving a car with very, very sensitive accelerators and very poor brakes. It is not the driver who is at fault, it is the car.

Mahlie Jewell: You're asking us to change the entire blueprint of our brain. That's not easy. But you can get there in the end.

Lynne Malcolm: Mahlie Jewell, and before that, Associate Professor Sathya Rao. It's All in the Mind on RN, I'm Lynne Malcolm.

Today, Mahlie will inspire you with her strength and insight into this complex condition of borderline personality disorder. But a warning that you may find some parts of her story disturbing.

Borderline personality disorder causes deep emotional pain for between 2% and 5% of Australians. For too long it's been misunderstood and highly stigmatised. Now there is hope, with appropriate treatment. Up to 80% of people with a diagnosis of BPD can dramatically reduce their symptoms and live normal lives. Mahlie Jewell is now in her 30s. She describes what she was like before she had treatment.

Mahlie Jewell: I was a very aggressive person, a very detached person as well, so I was very closed, I didn't let anybody in. I could be very explosive in my anger. There wasn't room in my space to be forgiving or to consider other people's positions, it was my position and that was pretty much it. Aside from that kind of persona as being a very strong, stoic, stony-faced person, inside I had always been very, very vulnerable and very sensitive. My emotions would explode at small things and it caused a lot of inner turmoil for me. I had quite low self-esteem, despite the fact that I appeared to be quite strong. I had no feeling of worthiness of myself, and I was self-harming. I self-harmed from the age of 13 to the age of 32. So I was a very chaotic person. Even I didn't know what to expect from myself.

Sathya Rao: Borderline personality disorder is one of the most commonly diagnosed personality disorders. We understand a borderline personality disorder as a complex and severe mental illness.

Lynne Malcolm: Sathya Rao from Monash University and executive director of the Spectrum Personality Disorder Service in Victoria.

Sathya Rao: People with borderline personality disorder have severe and unstable emotions. They experience emotions very intensely. The emotions also tend to change very rapidly. They could feel one thing in the morning and entirely a different thing in the afternoon and it can change again in the evening. And often it is out of proportion to the situation. People have described BPD to third-degree burns over about 90% of their bodies, so it is that severe and that painful, the emotions are. It is also said that they are lacking in emotional skin, so therefore they feel everything. So that's one very important symptom.

So the other symptoms are unstable interpersonal relationships. People with borderline personality disorder have difficulty in making friends, keeping friends, initiating and maintaining romantic relationships. They are very sensitive to rejection and they fear that they will be abandoned, either real or perceived. They can be very quick to jump into relationships and feel insecure in relationships. Some of them can attract dysfunctional romantic relationships. They also struggle with knowing who they are, their identity difficulties, and it can express itself as very severe self-loathing or self-criticism or as an eating disorder symptom. One scientist has described this symptom as identity lessness, lacking in identity.

Lynne Malcolm: So there's a feeling of emptiness and void.

Sathya Rao: That's right, it's almost a gut feeling. One of the patients said that, 'It's as if I am all just black inside, there's nothing inside me.' It's a very painful symptom. They try and do lots of things to fill the void, fill the hollowness, in relationships, sometimes in drugs and alcohol, but it doesn't fill the void.

Lynne Malcolm: Sathya Rao. People with this disorder often self-harm, and 10% of those diagnosed with BPD die by suicide. Mahlie started self-harming when she was 13.

Mahlie Jewell: For me anyway it was never just cutting. So I would cut and then when I was full of open wounds I would sit in boiling hot water to burn myself. So there was a lot of different ways that I self-harmed as well. It was using drugs and alcohol and being in really abusive relationships and encouraging those abusive relationships. So there's lots of different ways to self-harm. But yes, definitely cutting was the one that probably got me the most attention in terms of doctors and nurses and psychologists thinking that there was something that needed to be done about that.

Lynne Malcolm: So how do you see the role that self-harm had in I guess managing your emotional pain?

Mahlie Jewell: Yes, so it's really 100% biological and chemical, it's literally science, that when our bodies are in pain and they hurt, they release endorphins into our system. They also release lots of calming sedative types of drugs into our brains, so cortisol is all flowing through and everything. It's like that old adage I guess that if your foot hurts, you break your finger, and then the finger is going to hurt more than the foot. It gives you some kind of relief from what's going on inside of your head, and it has something physically that you can focus on as well.

It also has a lot to do with low self-esteem by outwardly marking your own body and in a way destroying your own body, if that's the way you see scarring. It actually makes it so that even in the future after that is gone you are still going to be distant from a lot of people because they are going to notice it and a lot of people are scared of people who do that. So there's a lot of mechanisms that go along with self-harm. It's very, very complex, and it's different for everyone as well. Mine definitely also fit into my addiction, it became an addiction for me. So for me it was really multilayered, especially having done it for so long as well.

Lynne Malcolm: So do you have scars? I can't see scars at the moment…oh yes, on your arms.

Mahlie Jewell: And I have some on my chest and on my legs. So yes, I do have a lot of scars.

Lynne Malcolm: Mahlie used to be very careful about hiding her scars but now she embraces them, because she feels they show what's she's been through. And to give you some idea of the emotional pain she's endured, she has attempted suicide 12 times.

Sathya Rao explains that they still don't completely understand the causes of BPD, but they know that there are biological as well as psychosocial influences.

Sathya Rao: At the brain level we understand that there is an abnormal emotion system, and that is what makes them experience emotions very intensely and have difficulty in controlling emotions. Also they control regulatory mechanisms of the higher centres of the brain. The emotional brain is not very efficient, so it's sort of a double whammy.

If we consider the analogy of a car, it's as though people with borderline personality disorder are driving a car with very, very sensitive accelerators and very poor brakes. And you can imagine why they would drive such a car very erratically. Of course I'm comparing it to their lives. So the idea here is that it is not the driver who was at fault, it's the car, it's the poor brakes, it is the sensitive accelerators that is at fault. So unfortunately we tend to blame the person experiencing the borderline personality disorder. So if any one of us were to drive such a car, we would drive very erratically too, we would crash and we would go through red lights. So the problem is with the brain level and at the mind level, it is not a deliberate behaviour.

Lynne Malcolm: Trauma is an important aspect of borderline personality disorder. Sathya Rao explains that BPD patients are wired to feel, think and behave in a different way because their brains have been sculpted by their earlier, sometimes traumatic or stressful experiences. However, he says trauma is not a pre-requisite for the condition. Mahlie feels certain that aspects of her early life have fed into the development of her disorder.

Mahlie Jewell: Yes, I think I'm very lucky because…well, not lucky but I'm lucky in a way that we are not running around looking for clues as to what happened or anything. I grew up in a place where there was a lot of mental health issues and that was quite normal in a low socio-economic setting, quite a chaotic lifestyle, it was full of drugs and lots of people committing crime and things like that. And so the people that I was hanging out with weren't the greatest, you know, we didn't have a lot of money, so there were things that we went and did to get money and to live. My emotional needs weren't really met in my house. I had parents who really didn't know what they were doing. I think just living in that chaotic space wasn't good for me, and I can definitely see where that all comes from. I didn't live in a stable environment.

Lynne Malcolm: Borderline personality disorder was named during the early days of psychoanalysis when it was thought to be at the border between neurosis and psychosis. That's no longer the case, but the term has stuck. Perhaps it adds to the doubt around how legitimate the disorder is. Borderline personality disorder has also had the reputation of being very difficult if not impossible to treat effectively.

Sathya Rao: Unfortunately the modern science of borderline personality disorder is only 20 years old. That means that we have an entire mental health workforce that is not trained. So when there is lack of training it leads to stigma, it leads to a perception that it is difficult to treat. That's one problem. And people with borderline personality disorder can be uncooperative for treatment because they are so confused, ambivalent often. So they have very poor help-seeking behaviours. For example they may go to the hospital, asking for help when they self-harm, but may refuse to help offered if they perceive that the person who is offering the help is not treating them properly. So these symptoms are challenging for any clinician to manage, let alone a clinician who is untrained.

Lynne Malcolm: Mahlie Jewell has bad memories about some of her encounters with the health system.

Mahlie Jewell: It has been pretty horrible, I have to say. There was a time when I was in the emergency room up to three times a week and I would be taken into the actual ED and then sat on a chair and I could sit there anywhere up to 6 to 12 hours, I would have nurses glance over at me, they would look at my wounds, some of which definitely needed to be tended to and would have been tended to if I had fallen off a bike or something. But they sit you on a seat right in front of the nurses' station, so you are constantly being watched, but no one really interacts with you, and when they do interact with you, a lot of the times it's quite cold.

I've had scars that later became infected because they weren't treated correctly, they needed stitches. I've been told 'there are people in this hospital who are really dying and you keep doing this'. Definitely that kind of ideology when I first was diagnosed of 'we can't fix this and you're just broken, and every time you come here to patch yourself up you're just looking for attention, you're doing this on purpose and just stop doing it'. So it hasn't been positive at all.

Sathya Rao: And because these people appear to be normal, if you recall the analogy of the car, so when you look at the car, it looks nice, the driver looks all right. It's hard for people to understand that there is a problem with the brakes and a problem with the accelerator. So it is hard to understand the pathology of borderline personality disorder, therefore we can brush them aside as people who are manipulative, people who are misbehaving and it is not a legitimate mental illness. Unfortunately mental health clinicians are the biggest stigmatisers of borderline personality disorder.

Lynne Malcolm: So mental health professionals really have a part to play in treating this condition as more legitimate and taking away the stigma.

Sathya Rao: Absolutely.

Lynne Malcolm: Sathya Rao, executive director of Spectrum Personality Disorder Service in Victoria.

You're with All in the Mind on RN, I'm Lynne Malcolm. Borderline personality disorder affects between 2% and 5% of the Australian population, but in the past it's been misunderstood and poorly treated.

And when it comes to treatment, people are often prescribed medication, but Sathya Rao says this is not appropriate.

Sathya Rao: There is very little evidence to support the prescription of medications. There is no medication which is specifically indicated or patented for treatment of borderline personality disorder. We unfortunately use medicines excessively. We have done an audit in Victoria and found that about 50% of the patients were on four or five medications simultaneously. So that's the most common way of treating.

Unfortunately sometimes we provide electroconvulsive therapy for people with a borderline personality disorder. I don't believe electroconvulsive therapy works for borderline personality disorder at all. The original risk is that sometimes people with borderline personality disorder can ask for electroconvulsive therapy as a way of punishing themselves, especially when they have severe self-loathing feelings and behaviours. There is a place for ECT if someone with a borderline personality disorder also suffers from a severe psychotic depression that doesn't respond to the usual medications. In other circumstances there is no place for ECT in the treatment of borderline personality disorder.

The only evidence-based treatment is psychological treatment which is specifically developed for the treatment of people with borderline personality disorder, and it needs to be delivered by a clinician who is well trained in the treatment.

Lynne Malcolm: These psychological treatments help people to understand the disorder and teach them skills to manage their emotions and their relationships. The most popular of these is Dialectical Behavioural Therapy or DBT.

After a long period of being very unwell, Mahlie Jewell realised she had to get some help, it was a matter of life or death. Mahlie eventually did a Dialectical Behavioural Therapy program.

Mahlie Jewell: So you learn things like sitting through distress and what to do about that. So we all experience distress, and what most people do is that they employ self-soothing. When you're a child and you haven't really been soothed as a child, that part of you that knows how to do that is very broken. Also it can feel very unworthy when you feel like you should be sitting through this distress and it's your fault. So we learn techniques to sit through that, delaying techniques as well, so things like just waiting an hour before starting cutting and things like that you put in place.

One of the other things that I really needed a lot of help with was interpersonal relationships. So it sounds a little strange but we literally learn how to do things like have a conversation without exploding, listening to the other person and doing active listening skills and trying to defuse that black-and-white thinking. So it's about looking at how we look at relationships and what healthy relationships are as well and discovering the things that we do that aren't helpful, but also discovering the things that the people in our lives do that aren't helpful and asking them to change their behaviour as well. So the whole thing is really about how you speak and interact better with people. It's really easy, but if you haven't had respect modelled for you, it's very hard, and it's difficult for us to be vulnerable. I used to always say I'm angry, I'm angry, but then really I wasn't angry, I was hurt or I was scared. But those emotions, they're not allowed in my world because they make you vulnerable and people take advantage of you when you are vulnerable. So you basically just learn how to communicate better as well with people.

Lynne Malcolm: And how did that help you? How have you responded to it?

Mahlie Jewell: It kind of led to basically the majority of the people in my life who are in my life now are not the people that were in my life back then. You start to realise as you're getting these skills, that there are other people around you who are dependent on you being unwell, who really want you to be unwell, and who are unwell themselves. And a lot of people have very unhealthy relationships and have no idea that that's happening. So for me it's changed everything because I started to look at the way people treated me and the way that I treated them. And when I was adjusting my behaviour, I started to notice that there were people who were not adjusting theirs and I was like, okay. I learnt, for me anyway as well, what real love is, and real love is not controlling and it's not directive, it's accepting and supporting. And so there are a lot of people that didn't make it into my life in the next stage of it.

Lynne Malcolm: That's a huge change.

Mahlie Jewell: Yes, it was massive but it has not been something that I have ever regretted. I am very careful with the people that I allow into my worlds and I have some pretty strict boundaries, which is strange because people with BPD do not like boundaries, but it's just that we are not used to boundaries and boundaries are really important and they are really something that you need to remain healthy.

Lynne Malcolm: So do you feel quite recovered now?

Mahlie Jewell: Recovery is like…it's a funny concept. I look of it as is there such a thing as recovery? Our lives are not flat lines, they go up and down. I like to use the analogy of an ocean. A lot of the time the ocean looks quite calm, but underneath it there's all this turbulence going on and these currents and rips and all that kind of stuff, you know, animals swimming and doing all that stuff, but we don't see that on the surface. And then these big storms come and we see that, and for me it's about having that kind of base calmness, so when the storms come, when bad things happen or things are just testing your resolve, that you can hold onto that baseline and say, okay, I can survive this because I've got these coping mechanisms and I know how to be calm and I know how to hold on to my strength. So for me it's having that core strength and saying I know who the people are who love me, I know the things that trigger me, I know the things that make me better, and holding on to those while you've got things coming at you that would knock any normal person over. So that's what recovery is for me, is having that strong sense of grounding.

Lynne Malcolm: Mahlie.

Sathya Rao is calling for a change in the way borderline personality disorder is perceived and treated.

Sathya Rao: The key messages are, number one, this is a legitimate psychiatric illness, a severe and complex mental illness which needs to be adequately resourced and adequately treated. We need to stop blaming the patients because it is a condition of the brain and the mind, it is not their own fault. We should stop blaming their families when they are trying to do their very best. We should stop blaming the clinicians because they are not trained. So we need to have a systemic response, we need to set a national agenda and develop a national training framework and implement the national guidelines, which is one of the world class guidelines that was developed in 2012. It's time to implement it.

Lynne Malcolm: And recovery is highly possible?

Sathya Rao: Remission from symptoms is the norm, not the exception. Recovery is possible. We know that in six months' time about 10% of the patients can go into remission. 23% of the patients go into remission in one year, and 50% of the patients go into remission in about 2 to 3 years, and by 10 years about 83% of patients have gone into remission. When you provide people with borderline personality disorder with evidence-based treatments, 60% to 80% of the patients achieved the remission in about 1 to 2 years' time. At centres like Spectrum which I direct, we find that up to about 80% of the patients go into remission in 18 to 24 months. So if anybody has a doubt that people with borderline personality disorder go into remission and recovery, then they are welcome to come and talk to us at Spectrum.

Lynne Malcolm: Associate Professor Sathya Rao from Monash University, and he's executive director of Spectrum Personality Disorder Service in Victoria.

Mahlie is now a passionate mental health advocate, determined to help others like herself.

Mahlie Jewell: One of the things that I like to tell people is that the majority of the time borderline personality disorder is not caused by but behind it is severe and significant trauma, and that might be something that you might never hear that person speak about, but for the majority of people with this diagnosis they have that in their background. They were actually going to change the name of borderline personality disorder to complex post-traumatic stress disorder. I was 100% behind that because that explains my situation. Basically that title is conveying something happened to me, and I think that we don't have empathy for people with borderline personality disorder. It has been heavily stigmatised and discriminated against. It's very hard to understand. There's not a lot of outward signs and it's very complicated, what's going on inside. So my messages would be; be empathetic. You can never be as angry and resentful and hateful to that person than they are being to themselves. No one who has a sense of worthiness would destroy their own body in those ways. People with borderline personality disorder, friends of mine, are the most loving and supportive and kind and compassionate people I've ever known, it's just that we struggle to do that behaviour for ourselves.

Marsha Linehan, who created DBT and is like the god of the most people with BPD, definitely my god, she made a beautiful statement and said that the depth of the compassion and kindness for someone with BPD is the exact same well that comes from their worthiness and self-hate. And I like to make sure that people know that. And also that people know that we've come really far, treatment does work. It's definitely a long process, it's a chronic relapsing disorder. But you can get there in the end.

Also, I like to tell especially clinicians that be really aware of what you're asking somebody to do. You're asking us to change the entire blueprint of our brain. That's not easy. And it's a hard thing to do DBT, it's very cognitive, you have to have quite a high level of literacy, and you have to have a hell of a lot of stamina. Dealing with any trauma is a long process, so be patient, and I'm all for relapse prevention because I do come from the drug and alcohol sector, so in drug and alcohol they accept that relapse is inevitable and you plan for it. That's the way I deal with my mental health issues as well, and I think that's really helpful for someone with BPD because it is a little bit like alcoholism or whatever where it's like, you know what, you fell down, get up again, start from day one again. And it is something that I think you live with forever. I never think to myself that I am cured, ever. So I always look at it like it's standing behind me and I'm aware of it and I'm, like, 'I'm watching you girl', but I never think to myself that I won't go back or that I'll never self-harm again. And I think just by having that in my brain and then making it so every day I make a choice to do things, that helps me a lot, to keep me going. So be patient with people, be kind to people. That's it, be patient and be kind, pretty much.

Lynne Malcolm: Thank you so much Mahlie.

Mahlie Jewell: No problem, thank you.

Lynne Malcolm: Mahlie Jewell. If anything you've heard today has disturbed you, you'll find information and links on the All in the Mind site, including Lifeline, and that number is 13 11 14.

Next time we'll hear more about borderline personality disorder and the story of an amazing mother-daughter team who've worked together towards recovery.

Thanks to producer Diane Dean and sound engineer Isabella Tropiano. I'm Lynne Malcolm, catch you next time.