Lived experience videos

Project Air Strategy talks to Åse Line Baltzersen on her recovery journey: ‘Recovery from personality disorder is a journey’. Watch this rich and inspiring story from lived experience. 

Question: How did getting a diagnosis help you? 

As I got deep diagnosis when I was about 20 years old, for the first time I realized or I learned more from my clinicians that, it wasn't something wrong with me, which is something I've felt my entire life-  that it was something I was just a failure, something was wrong with me since I couldn't fix myself. But as I got the diagnosis I realized that it's more about that I have certain issues or problems, but they are problems that can get better as I work with them, and with the clinicians, so together we could make things better when we knew where the problems were. 

Question: Was there a turning point in your recovery, after reaching “rock bottom”? 

Strange thing is that what I thought was rock bottom, it really wasn't, but that moment when I thought I had hit rock bottom I was on my way to do something insanely stupid. But then it hit me like ‘this is not who I am’. And that day I decided that I wanted to survive. I kind of realized that I'd been trying to die my entire life and I hadn't, and the sense was that I really didn't want to die, but I didn't know how to live either. So I kind of made the decision that day that I was going to give it a real shot and give recovery a real shot. And this kind of stayed with me through what essentially became rock bottom, and then later, in recovery, as I got treatment for this. So that decision was crucially important for me just to realize that I was going to fight, because recovery is a fight. 

Question: What advice would you give others about the recovery journey? 

My first advice would be to give yourself as many shots as possible, because recovering is not a process where you just go up and up and up and up and up. There will be…well I guess I'm not exaggerating when I said for everyone, it will be a battle, where sometimes you move forward, sometimes you can feel as if you're falling straight back to start. But as you slowly progress you will never go back to start. It keeps evolving and you keep learning new strategies and more things about yourself. 

So not giving up as you have a relapse of any sort- just kind of, it's a balance between being self-compassionate - that shit happens, let's move forward. At the same time I find kind of not accepting excuses because at times it's hard to differentiate between an excuse and what is just pure, what's called ‘shit happens’. It's the personality disorder, kind of, in the steering wheel, so just give yourself as many shots as possible and learn from everything that you can. 

Question: Any other advice about recovery? 

You're not your diagnosis in any way. No matter where you are in the process; either starting the recovery process or maybe just coming to terms with having a personality disorder. It does not in any way define you. It says a little bit about certain areas that someone struggles with to a greater or lesser extent, but it doesn't say anything about anyone as a person or your future hope. When I started out - it's actually 10 years since I started treatment today - I would have never imagined being a CEO of two companies and actually working and getting a higher education. I never thought I was there. I couldn’t even read the newspapers’ headlines at that time. So that diagnosis did not define me but it gave me treatment options, which led me to where I am today. I was not able to do it on my own and I think that's the first step - to accept help or, if necessary, actually fight for that help.

Mahlie Jewell talks about good treatment for personality disorder

Question: What are the essential elements of good treatment?

I think one of the main things to keep in mind is that we are human and a lot of us have been through some very traumatic experiences over a long period of time. And I think that compassion needs to be something they are thinking about in their dealings with us and I look at that as just treat me like you would treat your child or yourself or a member of your family. I think, also for health professionals that they do take an oath to ‘do no harm’, and to be really aware of the use of trauma informed practices should be the standard, and engaging with the consumer by asking what they need and not assuming what we need. And making sure they deliver that to the highest level they would give to someone in like, a cardiac ward or a neurological ward – to not look at it as any other type of illness, like cancer.

Question: What should you expect from your therapist?

It’s care. It’s the way that someone deals with you in a really genuine way, and genuinely wants to know what‘s wrong, how can I fix it, what do you need? I think that compassion to me, is understanding that perhaps you’ve had things in your life happen to you that were out of your control, and this is the only way you can be in control, and so, stop looking at it as a choice and look at it as a symptom of what might have happened in the past. So I think with compassion, you’ve got to put groups of people together, so someone who has trauma in their background isn’t any different to someone who’s been to war, and they shouldn’t have a different level of care and compassion around them. I can’t imagine them not being compassionate towards a soldier, not being compassionate towards a car accident victim, or someone who experiences an horrific crime. And so, I think compassion comes from within you and it’s genuine.

Question: How do you ask for what you need?

I often tell people that they best way for them to navigate through the system is to work within the system – so, to know your rights and to know your responsibility for the people around you, but to tackle that with solutions and not just complaints. So, if somethings happening and you are unhappy about it go to that doctor/clinician/mental health tribunal member with a solution. And so, don’t just go “I don’t like this happening to me” but say “this is what I prefer, and be really vocal about things like who you want to support you. That’s a massive issue. Not everyone is going to want their family involved even if they have contact with them. Some people have friends, employers, that don’t even know what’s happening with them. And so the whole thing here can get very scary, so I’m always big in saying, “who do you want to be here?” “who’s going to make you feel safe?” Don’t let somebody else tell you that – you tell them that.

Mahlie Jewell is a consumer advocate with lived experience of borderline personality disorder.

Being in Psychotherapy: Mahlie Jewell’s experience 

I was in a very volatile way at that time and my self-harm was out of control. And so I think what helped was that it never phased her, it never scared her, it was not something that she'd not seen before, so she was fine with it. She was very delicate in the way that she dealt with it. Her language was incredibly considered. That was one of the things that I really noticed with her is that she didn't, she didn't use language that other people did. She would actually get really angry when I call myself crazy. I'm invasive with that word, but she just knew, watching, and she's done it for a long time and she had all of that those internal boundaries there. She had boundaries and really clear boundaries and she knew all my tricks, and she doubled them before so you know she would outwardly say to me, you know, “I’ve been trying to test how far I'm going to go and I'm telling you that this is where I'm going to go, and that's not going to change”. And then I started to realize that boundaries are safety actually, and that I really like boundaries even though I didn't think I did. But it was just her experience and just the fact that I never got the feeling that I was too much for her, that I was too complex, you know, she was also very, very strong about continuity of care so she was really aware that she needed to be there and then and so she was able to give me really a firm commitment and say “look, I'm not going to go anywhere for this period of time and she did. 

So I think there were a lot of things that made her wonderful, but I think her experience, her continued education, and she had a very good way of learning from the consumers as well, and she would always kind of say that to me and say “you know you're teaching me things here”. And yeah, I think little things like they ask my opinion about things, and you know about their processes, and wanting to get feedback about that, it just made me feel valued. And I think when I felt valued as well then that helped my self-esteem really, and it helped me get better. 

It's funny because most people don’t realize the power of that relationship. My first clinician was the third person in my life who ever told me that they were proud of me, and that was massive for me. And so I needed to you know I was kind of for one for one moment I had someone who was proud of me and who was kind of on my side. And so I think there was lots of times when I could have slipped further backwards and I probably didn't do it because I wanted to keep their pride in me. 

So that's a massive thing, when you don't have that, and then think, maybe a lot of people who don't realize, what a lot of clinicians maybe, don't realize, the people they're dealing with, probably have never felt that emotion either. They've never had somebody who thinks they're amazing and who thinks that they’re smart and articulate. You know, there's a lot of negativity that's geared towards people with borderline and they can be so powerful by just actually doing some really strength based work with people - so strength’s based is the key!

Stephanie Leary shares her daily recovery journey from BPD with Project Air Strategy 

My name is Steph. Thank you for letting me share my experience with borderline personality disorder. It's my absolute pleasure to be able to share my experience and how I'm living with BPD day to day, with you, via this video. 

Question: When did your journey start? 

I had a pretty long journey towards my diagnosis of BPD. I was first diagnosed with bulimia when I was 17 and minor depression. I did treatment for that and managee my depression but there was a lot of emotional distress that I still felt over the coming years and that did manifest a lot with what we call "episodes" now and it did get worse and worse. I was on and off antidepressants and then when I was 22 I was, I guess, having recurrent episodes, suicidal episodes – to eventually the point where I did attempt suicide. I was in hospital for two weeks and they diagnosed me with depression again and sent me on my way home. I came back in another week later with the same thing and I was discharged two months later from that.

I had, I guess, comorbid eating disorder with that too and I moved up to Brisbane from Canberra and I started seeing a psychiatrist, and she was the one that finally gave me the diagnosis of BPD, which was extremely helpful. Being able to sort of know what I was tackling really helped me understand my emotional distress, why I was feeling a certain way and what I could do about it to sort of help myself in the future. 

She recommended I start a dialectical behavior therapy group which I did twice a week with a group of other girls around the same age as me. So I did that for about twelve months, and still saw my psychiatrist twice. We managed my medication as well. I was on an anti- psychotic and depressant and the first thing I wanted to do was get off the antipsychotic so we did a lot of talking therapy together and eventually I came off my antipsychotic. And then in DBT, that was sort of where I found the real changes started to happen. You know, we did a lot of work on identifying our morals and acting towards our morals, identifying triggers, and learning different coping mechanisms like your mindfulness and things like that as well which I started to implement in my daily life. 

It took a little bit of practice to be comfortable with it as well and we were trying to manage the eating disorder as well at the same time. But it was sort of like a revelation when my psyche said “you know, once we tackle the BPD I think your eating disorder will fix itself”, which surprisingly it did. And luckily it hasn't come back at all and I'm sort of at the stage with the eating disorder that it doesn't affect me at all. I thought it was going

to be something that it was constantly going to be in the back of my mind like screening calories and watching what I'm putting in and putting out. There all was always going to be a subconscious panic but it’s sort of at the point where I don't restrict on anything. And it's freedom. So that was sort of the first liberating thing that I experienced with my recovery and then from I guess recovering from that I could concentrate more on the BPD recovery as well. 

So implementing things like mindfulness, I had a lot of issues with at the beginning because I had to be aware of my body, which I was completely uncomfortable with. But I did find it

triggering for the eating disorders as well. So it was like a perpetual cycle.

But yeah, now I find that meditating is the most helpful thing that I use day-to-day. It helps me sort of manage a calm sense of self, and that sort of allows me to go by my day by day routine peacefully, without any sort of emotional peaks and troughs. 

Question: What helps with recovery each day? 

I'm always working on my recovery. Jenny, my mum, has this really good saying when people asked if I'm fixed yet (because this question comes up quite frequently). It's definitely better, yet mum says “Stephanie will probably never be completely better. She's just extremely good at managing her illness”. So, for me, I do a lot of running so I absolutely love running. I find that that's been really vital in my recovery, so I run in most days of the week with a group of running friends. They've become family now as well which is brilliant. We call it therapy. So we go for long runs on weekends and things like that. 

I try to implement meditation as well into you know most of my daily routines if not it's just five minutes to take out for myself where I can just sort of sit and be present with the moment. So, you know, noticing five green things in the room and just concentrating my breathing and things like that. So I still practice that every single day. I'm living at the moment, currently symptom free, but I'm still practicing all of my things, because I know that all it takes is

for me to just to get a little bit tired and then I start to sort of spiral again and I can feel the elastic band tightening so I know that I need to do these things. And because I'm practicing them when I don't need them I can use them, and they work, when I do need them. 

Question: What advice would you give to people newly diagnosed with personality disorder? 

The advice I would give is  just you really need to be patient with yourself, and be forgiving with yourself, because there's going to be a lot of things that are going to happen that will cause you to stress, but you know it's sort of a two steps forward one step backward thing. You're going to think you're making worlds of progress, but then there's going to be something that will inevitably set you back. But you need to be forgiving with yourself that that happens. It happens to probably every single person that has experienced a mental health episode or you know they are experiencing it day to day. And be proactive with your recovery. Definitely seek the help of a psychiatrist and psychologist - build up a team around you. 

I know it sometimes can't be easy and navigating the health system can be quite difficult, but if you can set yourself up with a doctor of some kind who can sympathize with you and can validate your experience; that is definitely helpful. Learn your triggers because that will be sort of the turning of the page, you'll be able to start your recovery and start sort of identifying why it is you're feeling the way you're feeling, and you'll be able to understand yourself a lot better. 

I did a lot of learning even about just BPD. So things like the black and white thinking.Yeah, like my irrational responses to certain situations as well. I could just sort of put a word or a label almost on to what I was feeling, and being able to have that ownership of what I was feeling and what was happening to me, helped me in recovery as well. So I think that learning about the illness and learning by yourself and your triggers are two really important things that can really help you move forward as well. 

Question: What was the turning point in your recovery? 

There was a point where I peaked and had all my suicidal episodes. I thought the world was against me not sort of the other way around. I was very stubborn and very resistant and I thought that you know this person's bullying me and this person's doing this to me, so it's them that needs to be fixed and not me, so if I take them out of the equation then I'll be better. But that didn't happen obviously because I was unwell. So it felt like almost the world owed me something and I was always the victim and I played the victim and that didn't help me in my recovery at all. So I think once I once I was admitted into the psych ward at hospital that was sort of my turning point, my realization point. I just said I was like, I'm 22, how the hell did I end up here? 

You know, I was brought up in a beautiful family. My parents were supportive and gave me lots of opportunities and I think when you end up in that place it's yeah I kind of had a realization that no, maybe I need to do something about this. And then for me you know I was on that had to make my appointments and things like that. You know, I learned that nobody else could fix me about myself so I was the one that needed to be proactive. And so, yes, I think that that admission was probably my turning point and I took ownership of that and you know I did have days where I thought it was you know Groundhog Day and I was never getting better and you know I was lapsing. But I guess the blessing of BPD is its, for me, it was episodical. So I’d wake up the next day and probably be a bit more motivated than I was the night before so I

would make my appointments with my doctor's again and take my medication, go for a walk, feel the breeze on my face, see the sunshine, things like that. It would just re-motivate me again. I was the one that had to make the decisions, to make the appointments. I'm the one that has to practice my coping mechanisms and things like that. I'm the one that has to manage my environment. Nobody else can do that for me. People can encourage me to do stuff but nobody else can get better, except me. 

Question: What makes having a personality disorder difficult? 

When I was put into hospital after my suicide attempt I remember talking to my boyfriend about it and then sort of said if I was in hospital with anything else, you know, broken arm, you know after a car accident, people would have come to visit me and would have got flowers or something like that. Because I had friends. And I said why can’t I tell someone? Why do I have to keep this hidden? And he even said to me he's like “I'm not ready to tell other people yet”. 

And then I sort of was reflecting on that and I was thinking, you know, that's not it's not his experience to tell, it's not his experience to be ashamed of, yet he does. So if other people are feeling shame around my experience then I should feel ashamed around my experience. And I kept it really hidden for a you know a long, long period of time. You're embarrassed because you don't have control over your thoughts and you're embarrassed because you get to a place where  you isolate yourself and you're embarrassed to reintegrate yourself with people when you are feeling better because you've avoided them for so long. You've avoided going outside because of the anxiety. That's completely irrational but it's there, it's present. These are emotions that are hurtful to yourself. It's, you know, you think about your rational mind you would never think about those things. People don't understand so you can't talk about it. You can't talk about this big cloud that's looming over you, so you just withdraw. People sort of almost forget that you were ever there. 

There's definitely a lot of shame and I think that cloud is starting to lift. I think it's a really great thing lots of people are starting to talk about it more so people are becoming a little more comfortable, but one conversation I do have a fair bit is people are more comfortable talking about depression and anxiety, but when they get to the more complex mental health issues there's still sort of a glass panel we’re sitting behind that we just can't break through because, you know, mass media portrays people with schizophrenia in such a negative light. So we're still scared. 

I've got this blog that I'm subscribed to and it has articles on it ask questions on BPD and narcissistic personality disorder, and people can reply to these posts and the misconception around the diagnoses is unbelievable. There's not enough education - Well there is but it's not accessible or it's not sort of a saturated just yet so people don't know that. All they can sort of talk about is their own experience which has probably been quite negative, especially with I guess BPD. We've been known to sort of twist situations because we're feeling so much distress that we don't know how to express that verbally. So we twist situations and it can come across as manipulative, but that's just because we don’t understand our emotions just yet so it comes across wrong. So people on the receiving end of that have had the negative experience so we're obviously very ashamed to talk about it because at the bottom of that, we don't want to hurt other people. We don't want to hurt ourselves. It's just we don't have much control just yet. You know, if we're in that certain part of our recovery we don't have just that much control over what we're experiencing and expressing just yet. 

Question: Would you recommend peer support work? 

If any of you are thinking about being a peer support worker Project Air has got some great programs in place and I would really encourage you to contact them, because I think helping others who have had similar experiences to you can be incredibly rewarding. There's nothing like being around other people who have had similar experiences to you.

Sonia Neale talks about her lived experience of  Borderline Personality Disorder & working with health professionals & emergency departments 

Question: Was getting a diagnosis helpful? 

I wanted a diagnosis but some clients don't. I felt it was very helpful to me to go through all the nine criteria, realized that I fulfilled all of them, and then I worked on them and I found that that was the most integrating process for me. Not everyone wants to know their diagnosis and that's fine. 

Question: What skills do new therapists need? 

I think new therapists need to learn how to handle their own anxiety when talking to people with BPD. Essentially if they can hold their own anxiety in check then it's not going to be contagious to the person with BPD. I think validation skills, active listening skills, the ability to sit in those uncomfortable feelings, whether they're coming from the client or the therapist, need to be addressed and looked at. I think the new therapist needs to have his or her own therapy so that they can handle their own anxiety, know their own trigger points, and so the countertransference doesn't happen too often in therapy. 

Question: What do frontline staff need to know? 

Stigma is a huge problem, especially when people go to emergency departments, mainly because clinicians and mental health nurses, psychiatrists, psychologists sometimes are not up-to-date with new information and new, which essentially says the people with BPD can get better, and do get better, with the right treatment, and it's also when people come to emergency departments to ask the right questions, not “why did you do this” but “what happened to you, what happened to you before you did this”, so the right questions need to be asked. As well there needs to be hope for recovery because people do recover from BPD. 

Question: As a consumer, what would you like to tell emergency staff? 

I think education is the way to go. Increasing up-to-date information for people, having people with BPD, the peers with lived experience, to go into ED and have a talk to people - to say when I come in dysregulated, my behaviour is not who I am, there are times when I function perfectly well at home, but when I'm dysregulated this is the only place I can come to, you are the only people who can help me at this moment before better or newer services come into it, so what I want you to do is to be able to listen to someone's story and understand where they're coming from. People do not want to come into ED and be thought of as manipulative or attention-seeking, because if we want to live a life, this is not how we want to live it by keep coming to emergency departments.

Project Air Strategy talks to a mother and her daughter about the importance of carers and the recovery journey (names withheld) 

Daughter: During my recovery there wasn't anyone that stuck by me other than my mum. She was the one person that went through everything with me. I lost a lot of friends, a lot of family members, a lot of clinicians gave up on me, and she was the only person to believe in my capacity to heal and to recover. And yeah, so I guess she is, you've really (Mother finishes –“been useful”). 

Question: What has been most helpful in promoting your recovery? 

Yeah, we definitely did have a moment where the light sort of switched on and I realized I needed to stop living like this. I spent most days a week either in a hospital waiting room, at doctor’s waiting room, a psychologist’s waiting room. My life was in waiting rooms and I reached that point where I realized that I didn't want to be like that anymore - that I actually wanted to do something, and I told mum when I woke up,  I said “if you take me home I promise I won't do anything bad again. I promise I won't do it” and at the time she was really wary because I was unwell, but it's been three years now since I said that out loud that I've been in serious recovery where I haven't relapsed at all and yes, I think that was really the beginning (mothers adds “of a turning point”) . Oh yeah I did find that hope, whereas before that, although I was making progress, it wasn't anything that was maintained. 

Mother: I mean you could also take what you've learned from that bit of progress, well by having made that kind of inner decision, I thought yeah okay, that's the first time you had said that and you know let's go with it, it's a team you know .

Question: What advice do you have for carers? 

Mother: Wow. I think perhaps as a carer to some extent I'm not too different from many carers who do undertake this journey with their family members who have a  diagnosis, and I've spoken to many ladies who say thank you so much for saying what you said because I'm in that situation, or just coming out of that situation. I think to just recognize that you're not miracle worker and you don't have all the answers and you just love them and support them, but also ask questions of the experts, you know to get a full picture, because sometimes the full picture isn't offered to you and so I think if at any time you think, is this really the best thing you should be doing, at least just ask, and get yourself more involved or as involved as you can be in the whole situation, and become a really sort of proactive part of that team hopefully and, then just go with it,  whatever happens, because it's like life -  you have good days and you have bad days and we’re all the same. So you know, as a carer, you're just part of that picture. That's the deal, that's the hand you're dealt and it's perfectly fine you know. It can be difficult but that's life as well, isn't it? So you just go with it and that's the only advice that I can really offer, love the people you love, care for them, stick with it, ask questions, and go on the ride and enjoy the benefits, yeah, because there are benefits. There's little gifts of “you see a recovery happening” and you treasure those things because they're great. It's happening and it might take a long road to get there, but hopefully it will happen. Relax about it.