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Steph

Age at interview: 23
Age at diagnosis: 14
Brief Outline: Steph started restricting what she ate when she was 13. This developed into anorexia nervosa which she struggled with for about 8 years. She is now fully recovered.
Background: Steph is 23, she is in a relationship and lives at home with her parents. White Scottish.

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Steph says she was always a sensitive child and very close to her Mum. At the age of 9, Steph lost her older sister to meningitis, and didn’t get to speak to anyone about it when it happened. When Steph was 13, she decided to start losing weight. She became very driven to eat less and exercise more, and liked it when people complemented her on her appearance. At 14, Steph’s Mum took her to the GP who eventually referred her to CAMHS (Child and Adolescent Mental Health Service). Steph received Eye Movement Desensitization and Reprocessing (EMDR), which Steph found helpful in dealing with her grief.
 
However, she still had issues with eating and Steph saw a psychiatrist who diagnosed her with anorexia nervosa and agoraphobia. First, Steph had outpatient treatment, followed by several lengthy hospitalisations over the years. During this time, Steph had relapses and her weight fluctuated and she had to be fed through a nasal gastric tube. At one point Steph was so ill she was only days away from organ failure. 
 
The turning point for Steph came as she was at home and had another relapse. She had a ‘light bulb moment’ when she realised that she wasn’t getting anything from her eating disorder and she had “nothing left” of her life. From that moment on, Steph became determined to get better. She remembers feeling sad that she was leaving her eating disorder behind, frightened of the unknown, but mostly excited that she would become the ‘real Steph’ again. Recovery was slow and gradual, and at times “hellish”, but Steph never looked back. Steph found it helpful that throughout her illness, her parents always distinguished between Steph as a person, and the anorexia as an illness.
 
Steph loves music and is learning to play the organ and teaches piano lessons. She used to play the piano whilst in hospital, and also took her flute in to play. Steph is a B-eat Young Ambassador, and wants to let people know that you can get better from being very ill with an eating disorder. She says letting go of her anorexia is the best thing she has ever done, but that nobody can force you to get better, you have to want to do that yourself. Steph says that it is important for a person to feel that everyone is working together against the eating disorder, and not against the person. 
 

Steph says her home life was always great and she had supportive parents. Everything changed when...

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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.

 

Steph remembers making a decision to start losing weight when she was on holiday. Things...

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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 has”.

 

Steph felt that being fed by NG tube was a relief but she was also scared not to be able to...

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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.
 
 

Steph played the flute and the piano on the hospital ward. It was an important outlet and helped...

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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.
 
 

Steph used to exercise obsessively in hospital even with the nasogastric tube in. She had sores...

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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.

 

Getting her social life back on track was a gradual process for Steph. She says much of it was...

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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.

 
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Steph could understand why her parents were still worried about her. They had lost one child and...

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I mean even now, I spoke at a carers’ meeting a few months ago and my Dad says, you know, “Even now, if I don’t see Stephanie for a couple of days, you know, if our paths don’t cross, he will still think, well I wonder what she’s eating.” You know, I thought that was really peculiar because I’m fine now, you know, there’s no problem, yet my Dad, Mum and Dad still have that fear, but I think that will always be with them. You know there’s always; because I was so ill and so close to death, and I having lost one child, the worst thing that could have happened would have been to lose another. So that, I think my family and my friends are always going to be on their guard, and I’m going to be always going to be on my guard as well, because it could so easily sneak back in. But, you’ve, when you make that conscious decision to say, “No I’m not going to let you do this to me anymore,” it can’t fight that, you know, so. 

 

Steph felt that it is essential to be treated as an equal. Although people’s thoughts might seem...

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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.”

 

“To get better, you need to realise eating disorders give you nothing”.

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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.

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