I was never a sporty child at all, I hated PE, and then when I got ill, when I first started losing weight, I thought, Right, I’m going to exercise a bit So I started doing sit ups , and then it became a bit obsessive really, it wasn’t healthy exercise, it was obsessive exercise, in that I would have something to eat and then I would need to do so many sit ups after it, and it eventually got to the stage, you know, where I would have to have some, my lunch or something, then the next three hours till it was snack time, I would exercise constantly until it was snack time, then I’d have a snack, then I would have to exercise till dinner time. So I didn’t have time for anything in my life, you know, I couldn’t see my friends, I couldn’t go out because I was exercising the whole time. And it got quite bad you know, when that, when I got very ill, I started getting sores on my back from like where I was doing sit ups and things and when, even when I was getting tube fed, I would still do sit ups in my room and the tube would run again, rub against my throat so my throat was burning, you know, through it and so, but I didn’t care, I just needed, I didn’t care what it was doing to me, what pain I was going through, I needed to do it. So I would do, you know, when I was at home, I would do my exercise in the house and then I would go for, you know, a three/four mile walk as well. And I mean, I’m talking when I’m life-threateningly dangerously BMI’s, how I need it I don’t know. But I find, you know, the power of the mind is incredible, and the physical pain that I was feeling was nothing compared to the mental anguish I would go through if I didn’t do it. And that’s how I think I was just so driven, and it was scary, when I look back it’s scary what I did.

At the beginning I wasn’t feeling able enough to get out and socialise and everything, but like everything else that’s just fallen into place, and it’s quite strange now because every single night I’m out doing something [laughs] whereas before, you know, I was just in the house all the time, so it’s been quite, it’s great though, I love it. But again it was all very gradual and I just had to do things when I felt ready for them, and I did, I’d get to the stage where I do feel ready for things, you know, even now if somebody wants me to do something new, I get anxious about it, but I do it now, whereas before I just wouldn’t have done it and I do it and then I feel great after it because I’m like, well I’ve achieved that, you know, I’ve conquered that fear. So it is very much about facing your fears, you know, feeling the fear and doing it anyway.

I think it’s important to make the person feel like, like they’re an equal to everybody else, you know, everybody on this earth is of equal importance, whether they’ve got an illness or not, and although they’re struggling with their feelings and their thoughts at the moment, and although they’re maybe not rational, you have to remember that they’re completely real to the patient, to the person who’s suffering, and you need to try and give that credit and understanding rather than demean it. So just listen to what they have to say and try again, as of the parents, try and work with them because it’s only going to work when they do it for themselves, you can’t force getting better on somebody. They have to do it from, for themselves, so you need to work with them and keep them safe until they get to the position where they can say, Right I’m going to do this now

I think I would say, in order to get better from an eating disorder, you need to realise that it gives you nothing. If you feel that you want to hold on to your eating disorder, then you’re holding to it for a reason, and if you can work out what that reason is, you can then work with yourself or whoever you’re working with to come up with another kind of coping mechanism to get what it is you get from eating disorder. That’s kind of what caused me to change in the end, was that I found other ways to get the feelings that I needed and the comfort that I got from the eating disorder. I just now get it in other ways, you know, from talking or going out with friends or seeing my boyfriend or having a hug from whomever. And also it’s not a happy life to lead, you know, it’s not one and it’s not one that is sustainable either. You’re eventually going to get to a point where somebody steps in and you need to change, or the worst happens which we don’t want to talk about. So if you can make that change yourself it will just make it so much more worthwhile, because if it’s on your terms, it’s more likely to stick.

I first started losing weight when I was thirteen and I remember it very well. I was on holiday, we were on holiday in Switzerland visiting friends, and I remember saying to myself, Now when I get back from my holiday, I’m going to lose some weight So I did that because I was, I was quite, you know, a chubby child so I had weight to lose without anybody noticing, and when I first started losing weight people just thought I was losing my puppy fat and thought nothing of it, and it wasn’t until, it just spiralled out of control really and I became very driven and very determined just to keep losing weight, and eat as little as possible and exercise as much as possible. And it was when I was fourteen, my sister said to my Mum, Do you realise Stephanie hasn’t eaten anything today You know, it came to dinner time, I didn’t want my dinner either and my Mum thought, Neither she ha.

For me, in a sense, sometimes the NG feeding can be a bit of a relief, because you do not have to eat the food yourself.

One of the times I was on the feeds, I was allowed into the dining room to eat as much as I possibly could, and then whatever I didn’t manage got put down the tube as a supplement. Whereas the last time I was in I was given the chance to eat, but I just couldn’t do it so I’d be sitting at the dining room, in the dining table with nurses and therapists beside me trying to make me eat and I could not do it and I felt so bad, it was like, I’m so sorry but I can’t do it you know, apologising for it, but I just couldn’t bring myself to do it, no matter what they threatened me with, or said, Look this is going to happen if you don’t eat this So the way it worked then was if you didn’t manage your meal, you got taken into another room, and you got given the meal in supplement form, and you had to sit there until you drank it. I still couldn’t drink it. So I was basically in there from breakfast until half past ten at night when they would let me go to bed, just sitting doing nothing and then when I could, wasn’t managing that and it was building up and building up, they says, Right, you’re going to have to go on the tube feeds

And that time I wasn’t allowed into the dining room. I wasn’t allowed to eat anything, all my intake was through the tube and I had to be on that until my BMI got up to a certain level, and then they would let me back into the dining room. But it was a relief in a sense because I didn’t have to do it, but the same time it was very, very scary because I didn’t have control over what was going in to me. I knew that I was getting more down the tube than I would be if I was eating the food, which was difficult to deal with, and you were very isolated because you weren’t in the dining room with all your peers, so you felt very left out from the rest of the hospital and almost like a bit of an outsider because it was like, they were all trying and they were all eating, whereas it might have looked as if you weren’t even trying. Which wasn’t the point because you did, I did try so hard but I just couldn’t manage it. But it worked as a bit of an incentive as well because, it’s, strange as it sounds, I wanted to be back in the dining room. I wanted to be eating the food, I wanted to do it the proper way so it worked as a bit of an incentive to get back into the dining room and as scary as it was going back in, I knew that I could do it then, I knew right, the only way I’m going to get home, I can’t go home on a tube, you know, so that, there was that added incentive as well in that I need to eat the food because you can’t be on supplement drinks for the rest of your life, and you’re not going to get home while you’re still taking supplement drinks so. So it was pretty hard going, I mean it was a lot of fluid that was going into you, so I spent most of my time bent double because my stomach was so full and everything, it wasn’t easy. But it got me out of a rut; you know it was necessary to get me started.

Again both the hospitals I was in had pianos so I was able to practice my piano. I was allowed out to my lessons, my piano lesson, and my flute lesson. The last hospital admission I wasn’t because I was too ill, but eventually I got back to it when I got out. So I carried on with my lessons, I managed to get, finish all my exams, you know, my music exams, and I took my flute in with me in all my hospitals [laughs], you know and I just used to play away to myself. It was a great outlet, and even like when I was at home, even though I wasn’t able to go to school or anything, I, sometimes I would still manage to go to orchestra or wind band and I would see my friends there, and they would come to visit me, you know, and just, so it kept me in the loop of a social circle, and it also kept my brain active and it just gave me a relief to everything that else that was going on, because when I go and play the piano, I can just forget about everything else. So it was really important to keep that up. it’s been my livelihood, you know, since I’ve been ill. When I’ve been ill that has been the one thing that I’ve been doing, so it’s been a great outlet.

Did you feel at, at any point that you didn’t want to play music or that you were too ill?

No. It got to the stage where I was struggling with playing the flute and the piano, because my piano teacher even says now she says, Now Stephanie, you’re playing as like a different person cause you’ve the strength behind you now she said, Whereas when you were ill you couldn’t hammer it out on the piano [laughs] and then my flute, I would get really light-headed playing so I wasn’t, I wasn’t, because I stand when I play the flute.

And I wasn’t able to do that for very long, so then, but then that was when I got taken back in, so that kind of all sorted itself.

But it was quite interesting because when I was in hospital, you know, I would go to the person next door and I’d say, Look, if you don’t want to hear me playing, just come and knock on my door I was like, I really don’t mind. But everybody says, No we love hearing you play they says, it’s great, you know and the cleaners used to just come along and walk past the door just to listen and everything, so it, it, everybody seemed to enjoy it which was quite good, useful for me so.

Home life has always been great. I had a brilliant upbringing, you know, I, it was just the worse thing in the world that my sister died. You know, she was only nineteen and it changed everything, but my Mum and Dad never did anything wrong to make me like this, and I think a lot of people look at your home life and think, Oh something must have been wrong in that for you to end up like this but there was nothing. My Mum and Dad couldn’t have been any better, and my Mum especially because I was so attached to her, she was there through it all of my illness and she nursed me through my illness.