EVOCATIVE MUSIC Captions by Pippa Jefferies. www.able.co.nz Captions were made possible with funding from NZ On Air. Copyright Able 2016 And how are you feeling about doing this? Um, pretty nervous. LILTING MUSIC My baby sister Dominique was only 9 when anorexia took hold. In the 14 years since, our entire family has researched treatments and read books, but none of us truly understand what it feels like to be Dominique, to have spent more than half her life in the grip of such a potent condition. I want so much to help, but only now is our relationship at a point where Dominique ` I call her Nechi ` is willing to share her reality. LILTING MUSIC CONTINUES I haven't really talked to anyone about it, apart from one really close friend that really understands, um, so it's scary that I potentially am putting my name as, you know, like, uh, reconfirming that, I guess. But you're someone that lives with an eating disorder. You aren't the eating disorder. Yeah, yeah. Like... LILTING MUSIC When I see someone else with anorexia, I just feel just overwhelmed with what they're going through. People are frightened of it and don't know how to approach it. It definitely hurt me for a while because they don't understand or they don't choose to ask and learn. Why do you think they're frightened about it? Um, because it has a layer of physical and mental. It's a perfectionism thing for me that started from a really young age. For years Nechi's kept her eating disorder hidden and tried to manage her problems in silence. I admire her for opening up. So, um, do you want a Double Down? (LAUGHS) Would you ever eat a Double Down? (LAUGHS) No. No, me neither. (LAUGHS) I'm nervous about filming at a cafe because Dominique is too. No one wants to make a point of the food, and yet we're all watching and willing her to eat. So, have you had breakfast? No. She can feel it. I want to ask her about the foods that are safe and the ones that are scary. Can you tell me about that, um, restriction? Like, it can be that you stop having something some day and then restrict and restrict and restrict, eh? It's sort of like it just sets the benchmark that if you've had` if you've gone without this for one day, then you're OK to go without it the next. It's` It's just a set of fixed rules. It's not following your body's hunger signals. It's just, um, a day-by-day this is` this is what works. And so now I've just learnt that even if I'm not hungry and I probably don't` I still haven't fully established the right hunger signals and I just know that in my mind, so even if I'm not hungry, I don't let myself go without, um, because the next day it's gonna be even more challenging for me to put that back in. GENTLE MUSIC So, there's a point when you get here that you kind of... freeze, eh? Can you tell me about, like, what's going on when it comes time to order? Um,... yeah, you just freeze up and have a lot of thoughts going on, I suppose, and, um, it's hard to know who's in charge, so... So when you say who's in charge, what do you mean by that? Nechi or anorexia and what anorexia has to say about the situation, cos sometimes it can just dominate. What's Nechi wanting? (LAUGHS) Do you wanna order? Yeah. Have you got it? Yeah, I think. Yeah. Hi. Hi. What can I get for you? Um, can I please get the cacao superfood smoothie? Yep. To have here? Anxieties around food and what you eat and just this` people` other people can be so spontaneous and not think about it, and it takes a lot of mental energy to just talk to yourself and meanwhile be so sure on the level that they are and have that flexibility. What`? What foods do you allow yourself to eat and what foods don't you? Um, it depends what it is. If it's something that is OK within anorexia's rules ` fruit, vegetables, um, lots of meats. Um, so, I guess, like, I eat` I eat pretty healthy, and sometimes I wonder what the threshold is between, um, that and then it becoming a disorder. I feel quite, um, I guess envious of other people, like, because a lot of women are health-conscious, but they, um` it's in no way threatening to their health. It's all positive. > I can't go there, um, because it's not safe for me. If you go there, you're all there, because if you give anorexia an inch, it'll take a mile. < So do you enjoy food? Yeah. Especially naan bread. (LAUGHS) REFLECTIVE MUSIC PEOPLE CHATTER I'm the eldest. Nechi is the youngest. Ours was a truly happy childhood. We lived on a farm with loving, gentle parents. I remember a happy, healthy, fun little girl. She was the very best at everything she tried. But little did we know that with every success, Nechi put more pressure on herself to do better, and this is where it started. And somewhere along the line, I asked Mum what an eating disorder was and, yeah. And you didn't even know what it was. No. Yeah. But Mum and Dad knew. We did graph her height to weight so that we had a clear indication of where she was. The BMI jumped to below 14, wasn't it? Yeah. It was, yeah. And, um, models, um, can have heart failure at below, you know, like, a similar amount. The heart, the muscle of the heart, is, um` it starts to get to a point where it can fail. So, um, Nechi was admitted to hospital. GENTLE MUSIC She was 11 and so unwell that for three and half months was confined to a hospital bed and fed through a nasogastric tube. Even the slightest exertion would have put her organs at risk, so she was only allowed to move around the hospital in a wheelchair. LILTING MUSIC Dominique is a survivor, but the dark shadow of anorexia has been a constant in her life. MUSIC CONTINUES How many times do you think you've sort of danced with death? Physically, a few times. I could` There were times I, um,... couldn't tell anyone, cos I know Mum and Dad were so scared, um, but, yeah, my heart was hurting and, um... And then emotionally is another thing. Um, there were times when I just felt like giving up because... I felt like there was no way I could get out of it. It has been really difficult to leave the house sometimes when I've felt low anyway, and then go out and it's like projecting that, but also any judgement can really hurt. Now she's 22 and coming to the end of a degree in psychology. It's helped her to understand anorexia. It's almost like sometimes people feel it's their right to point out that someone's too thin, but they would never do it or it's socially wrong to do it if someone's overweight. For me at the start even being asked what anorexia, what it was saying to me, um, was a really difficult question to answer. Because it's a belief system that's so ingrained, it's not like you've got a voice talking to you in your head; it's just` it's just there. It's what you believe. We didn't spend that much time together, eh? Eh? You and I? Yeah. No. As` As sisters. But you were a little` You were a little kid when... Yeah. ...I was leaving home and... POIGNANT MUSIC It's really hard not to know what to do. In the early stages, her paintings were the only glimpse we had into her inner world. She felt so much shame. But research now reveals that in 60% of cases, it's inherited. Across two generations, all of the women in my family have had some degree of eating disorder. Mine happened when I was` when I got married, actually. And when we got married, I'd never been in control of cooking or food, and I think it was just then that I decided I was gonna try and do something to make myself feel better about myself. POIGNANT MUSIC And so that was, um, from 20 to 26, and the` the biggest reason that I, um, got through it was I just wanted to have children, and now I've got five, (LAUGHS) which is really cool. (LAUGHS) Um, and Dominique, she tried so hard at everything she did. She was a little perfectionist. She was just a little kid trying to deal with a serious mental illness. Nechi actually hid food, hoping everyone would think she'd eaten, but Mum recognised the behaviours. What did you find in here? Oh, lots of... lunches, muffins, um, yeah, that sort of thing. Mm. I really don't know how much she understood. I think it's just such a strong... voice in her head or whatever you like to call it that was telling her. And what about, like, when the weigh-ins and stuff started? Like, how`? You know, there were ways of making yourself heavier and stuff for those, eh? Can you`? Yeah. Can you talk about that at all? Yeah. Um, I would just drink water. It was just the fear I'd see in Mum and Dad and the consequences. POIGNANT MUSIC Yeah, so you were scared to lose weight and you're scared to gain weight. REFLECTIVE MUSIC When I was younger, the lines got blurred between Nechi and trouble and anorexia and trouble, and that's when I got really hurt. I never wanted to do anything wrong, and then all of a sudden I was just doing everything wrong. POIGNANT MUSIC MUSIC SWELLS When Nechi was 12, we made a short film. It was about a girl who was running away from something she didn't understand. BOOM! (GASPS) RUMBLING A strange little narrative, but do you think it... it was kind what was going on? Yeah. I would run away from home cos I` I had stayed down the farm for a long time cos I was, um, yeah, just so lost. The thing that's really hard is that... and it's probably` it's because you see it from Nechi's perspective as well, she knows` She knows. She's not silly. She actually knows how hard it is for us, and so she feels` and one of the biggest debilitating things about anorexia is shame. It keeps the door wide open. This is the first time we've really been able to talk about it. For quite a while, I had to be reliant on everybody else to know where I was at because I just got so 'I can't trust myself' in the way I saw myself. Um, and that came through a lot of therapy as well, and people would say that's anorexia talking, and that was a big part of what really hurt was that it would actually be me talking, and so I sort of lost all my self-judgement. So, it's not a question I'd normally ask you, but it's something the audience might ` have you ever thought that you were fat? No. No. I have seen really thin girls as well and I don't wanna be that, so` but it's just not this idea of perfect. And then I know in my logical mind that there is no perfect. REFLECTIVE MUSIC I came to the gym to get physically stronger. Your heart has to work pretty hard, so I just do really low intensity, and the focus has been on, um, doing weights and things to build up my bone density because that also can get really low, um, like, lead to osteoporosis. It's been hard for Dominique to have a normal life. Because of her anorexia, her well-meaning friends and family often question her choices. She's training at a gym and assures me it's a positive thing. If I come into the gym and I know that I've come in with the wrong state of mind and I know that anorexia's in charge, I'll call Mum. And it's just about telling someone, and it helps get their support. While she's opening up, Dominique quite rightly sets boundaries about what she'll share. I can sense she's really uncomfortable looking at her body in the mirror. Maybe I've overstepped the line. Yeah, it is confronting. For me it's more about what other people are seeing and being really conscious of that. But, um, body image can change on a daily basis depending on where you're at in your mindset. Um, I` There's a big idea that, um,... you see, like, cartoons and stuff where we look in the mirror and see a huge image of ourselves, and for me it's not like that. Um,... I don't know if I see myself accurately, but I` I see myself as, um, pretty slim. REFLECTIVE MUSIC I generally just come in and keep my eyes down and focus on` on what I have to do. Sometimes it's been like, 'She's anorexic. She shouldn't be here. What's she doing at the gym?' And when you know that you're doing the right thing and you're being true to yourself, then it... for me, anyway, it doesn't eat away at me as much, um, because I know what I'm doing is right for me. This one's got all the sand in it, so it's a little bit awkward. Go nice and low and drive from the legs. Feet shoulder-width apart and big step out forward. I think the main thing, um, training Nechi and someone else would be is that our goals are very different and that this isn't weight-loss related. This is more about health and for the future and for her about making her body strong so she can accomplish those goals of recovery and to actually feel strong in her own body and be happy. Good. There's four more. Well, I've had an eating disorder myself. I used to be very badly bulimic, so we relate to a lot of things. I can give her tips on what helped me, what didn't help me and how we kind of, like` We're kind of like sisters in a way, not really like, you know, PTs and stuff. We message quite a bit. There's a lot more communication that I would have with Nechi than I do with my other clients and stuff. It's a bit more professional, whereas for us it's not that professional any more. I mean, it is professional, but we know a lot about each other, like personal stuff, so... We did this one last time. You're gonna squat; I'm gonna stand back. So that time we did basketball. Yeah. Oh, that's true. When I come in to see you, I think that's something that I... makes it so much easier is that we... you've got that first-hand experience, whereas someone else, if I even try to start to explain myself, it's really difficult... Yeah. ...because, um, there's not that personal experience and... Yeah. My mum was actually quite at` at the time really embarrassed to speak about what I'd gone through, so when people were like, 'What's wrong with her? Why did she come home from Wellington?' you know, 'Why isn't she in uni?' Mum would just be like, 'Oh, she's just really stressed.' You know, she was too embarrassed to speak about it because I think she actually didn't really know what it was herself, so it was kind of like a hush-hush, 'don't talk about it' kind of thing. And then last week I found out that two of my cousins ` one's 18 and I think both them are about the same age ` are actually` have an eating disorder, gone through really really bad depression and have gone through exactly what I had gone through and are going through it right now. I don't Nechi has ever wanted to look thin. It's easy to explain away anorexia as evolving from a pressure from media and advertising, but that just doesn't fit with what I'm learning. Nechi would actually like curves. GENTLE GUITAR MUSIC I feel uncomfortable wearing anything that's really short, like short dresses, short shorts, anything sleeveless or singlets and that sort of thing, because I've seen where people's eyes go. Yeah, it's not that I can't wear them, but it's just being a way of kind of protecting myself when I go out into the world and not having that... that extra attention drawn to me. What people see is the symptoms of anorexia, and it kind of... sometimes can get in the way of deepening understanding. It's not something that I'd wear every day, but I think the biggest thing that I'd love to be able to wear comfortably is a bikini. It's such a heavy subject. (LAUGHS) < Got an accent? I can't do French. BOTH LAUGH It's so great when she breaks a smile. GENTLE MUSIC Psychology has been the perfect choice of study. At times it's been confronting, but it's helped her understand her condition. It's... hard to take at times. They distinguish, um, bulimia and anorexia and say that anorexia has far worse outcomes, um, and basically the longer term, the higher mortality rate, so 60% stuck in my head. I understand that it's really hard to treat, and I think that it almost puts up a little bit of a block for me. But it also makes want to make changes in the system with how it's approached. Um, walked through uni several times and walked down the street and overhead people say things, 'God, she looks sick.' 'Yeah, anorexic,' and, yeah, just stuff that made me wanna, um, just` I wouldn't go out any more. Um,... POIGNANT MUSIC ...and that's where I got so much social anxiety. Yeah. Nechi will always be my kid sister, but she's an adult now, yet she's still confronting the issues of her childhood. She's fiercely independent and private and so, so isolated. We've both moved to the same city and our homes are close, yet I have little part in her life. As family, I'd like to share each other's struggles. It was almost like I saw it as their right to say that. Like, I felt so ashamed of myself, and so, yeah, I just internalised what they said and was like, 'Oh, it's just they don't know much about it. It's just a natural reaction, 'and I'm the one that should feel at fault and cover up and not show them and not be vulnerable to that.' POIGNANT MUSIC I'm sorry that you've been through that. There's a lot of stigma. Most of the trauma and anxiety she's experienced seems to have come from others' judgements. She needs compassion and empathy from the big wide world. It's about now not seeing myself as damaged because of that. I think the bits left are talking to myself with compassion and, um, yeah, just working towards a little more self-love. Nechi has one big goal ` to improve treatment for people with anorexia. I wanna have a holistic rehab centre in NZ that's really accessible. It would involve all sorts of different things that would just get them to connect with themselves again. And right now, like, it's out of the question. I know in my heart that I have to be, yeah, definitely better in both a physically and emotionally stable place for them to be able to trust me and for me to be able to say to them, 'You're going to be OK. 'It's gonna work,' and I can see glimpses of life in me, but it's not clarity there. So until I have that, then I don't have a clear pathway. In my experience, I didn't have really any other association with anyone that was going through an eating disorder, you know, specifically anorexia. Yeah. I didn't have anyone, so, I mean, yeah. It's been really lonely, eh? Really lonely. My sister's life has not been easy, but her experiences have made her strong and insightful. Anorexia is a complex and secretive illness, so it's taken tremendous courage for her to allow me to share her knowledge and experiences. It's really freeing being able to talk about it and put it out there because I think that the shame that can overcome you loves to keep it very private, so I think vulnerability is the way of stripping the shame back and, um, yeah, just being exposed and, um, people can kind of take me for what I am or like I don't have to feel like I, um... yeah, this is what I am and it's freeing in a sense that, I guess, people will know that about me and, um, it's powerful that they can` will still accept me. Dominique's got so much to offer. I just hope that when she sees this film, she recognises that too, that she is such a strong young woman. GENTLE MUSIC MUSIC CONTINUES Captions by Pippa Jefferies. www.able.co.nz Captions were made possible with funding from NZ On Air. Copyright Able 2016 Ladies and gentlemen, a special welcome to our dignitaries, our finalists, families and friends and sponsors. We're closing in on the 2016 Attitude Awards. This is our ninth year, and we've mixed things up. Get ready for new categories. Asperger's is not so much a disability but is almost an ability because it helps me think outside the square and it really comes out in my dancing. This year's awards will be bigger and better than ever before. You'll experience unique stories of Kiwis achieving, mixed with world-class performances and a full three-course dinner. Only... L-I. Live. O-N. Once. This is just the most incredible honour, and just looking around the room, I don't see disability. I can see so much potential, ability and just total awesomeness. Just want to have a big shout-out to my dad. You know, he's been here supporting me, so it's cool. Thanks. CHEERING, APPLAUSE For tickets, go to...