My Diabulimia

steffany4lyfe Community Member
  • My name is Steffany.

    I am 16 years old and I live in the UK.

    I was diagnosed as a type 1 diabetic when I was 8 months old.

    And that was when it all began.

     

    My diagnosis was not easy. Obviously as I was a baby I don't remember, but my parents told me what happened. And how hard it was for them and my older sister who was 2 at the time.

    I was a happy little baby until at about 6 months old I got a cold, nothing major, nothing life threatening, just a cold. However my mother and many doctors have told me that this was properly what triggered my immune system to attack my pancreas. I was at risk of diabetes anyway, as it runs on my father's side of the family. I guess that risk level in my genes and that first injection just made my body go haywire and I started to get ill. I went to a happy baby to a baby that cried 24/7, that was sick after every feed, and properly used up the whole of the UK's nappy supply; I also got horrible infections mainly in my ears and must have been in horrible pain. My mother after two months thought enough was enough and took me to the doctor and expressed her suspicions that there was something more sinister causing all my problems, however the doctor just put the problems down to yet another ear infection and turned her away. A couple of hours later I was completely comatose and my mother rushed me into hospital where they feared that I had got meningitis and pumped my limp body with lots of sugar-filled antibiotics to see if that could save me. Hours passed and I just got worse, my organs where starting to fail and they told my parents if they didn't find out what was wrong soon I was going to have permanent brain damage or even die. They did many tests to find out what was wrong with me; however the one that saved my life was the test they did on my spinal fluid. Where they discovered I had deadly amounts of sugar in my body, they asked my father if diabetes ran in the family, on which they said yes and that was when they realised I was in DKA (diabetic ketoacidosis) and they started to pump into my body the insulin that saved me. I eventually came out of the coma with thankfully no long term damage however the whole experience must have been awful for my family, however they persevered, they learnt how to handle my diabetes, learning how to inject using an orange (must be why I hate oranges now) and then on me. I can't even begin to imagine how hard it is to inject your baby daughter, and watch her cry as you hurt her testing her blood, but it had to be done to keep me alive. As my blood sugars where maintained at a good level I became a happy baby again, there are many photos of me in hospital as a baby tubes and needles entering my body from every direction yet still I had a smile on my face. After I came out of hospital the doctor that said I only had an ear infection was thankfully struck off and we moved house to make a brand new start.

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    As a young child I pretty much excepted that I was different, my mum would have to come to do my injection for me if I was at a friends house for tea, and every afternoon at school I would have an afternoon snack in the middle of class to keep my blood sugar stable. In fact I remember that many of the other kids where totally fascinated when my mum would do my injection, and where envious when they had to keep on with their school work while I sat back in my chair eating my malted milk biscuits. When asked to explain what diabetes was I used to say there is a machine in my belly that doesn't work to my injections do the work instead? I didn't really understand back then what diabetes was, or what would happen if I didn't have my injections, I just knew that I had to inject or something bad would happen and seeing as I was a very good girl I did what I was told. I never saw myself as very different because of the diabetes, I could still run around, I could still play, I felt well and because I was back then only on two injections a day people didn't really see my injections so unless anyone knew I was just a normal kid.

  • It was only as I got older that I really realised I was different. I didn't feel normal anymore when I had my afternoon snack while the other kids worked, or when the other girls got changed for swimming while I had to have a sugary drink and then get changed so that my blood sugar didn't go low. I also noticed I liked to do things that the other girls didn't want to do, I loved setting things on fire, playing rough games with the boys, and generally didn't want to play mummies and daddies with the other girls. I started to feel not normal anymore, I felt like I was constantly being made to eat while other girls just got to play and eat sweets whenever they wanted. I started to hate eating, but I was a good girl I had to do what I was told....right?

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    In my last year of primary school I started to do little things that where "naughty", but made me feel triumphant. I would buy sweets on the way to school and gorge myself on their sugar which I had been denied for the fear it would make my blood sugar go high. I would "forget" my afternoon and morning snacks and I would put all my lunch in the bin and go play instead of eating. I also started to think because of all the snacks I was made to have I was huge compared to all the other girls and hated getting into my swimming costume and people seeing all of my what I thought was fat. So I stopped going to the school swimming lessons hiding my costume in the back of my locker and saying I forgot it and so I couldn't swim, and all sorts of excuses. In the end I think I only did 2 swimming lessons in the whole of year 6. I started to become VERY good with excuses. On the night of my first sleep over I sat and ate lots of sweets with the other girls and felt very normal for the first time ever, and it made me really happy, when I did my blood test it was a bit high after the sweets, something like 22 and I knew I should have called my mum to have her come and give me an extra injection but I didn't want to, I wanted to keep having fun, so I didn't call her and went off to walk the dog with the other girls where I got bitten by some sort of bug and because normally I had good blood sugars my body couldn't take the spike of sugar and the bite started to get infected. When my mum came in the morning to do my injection my blood sugar was still high and she looked at my blood sugar from the night before and told me off for not calling her to give an extra dose of insulin and letting my blood sugar go high. When I got home I started to feel unwell and went to look at the itchy bite on my leg which now had a large yellow head and was clearly infected. My blood sugar must have then got very high or something because at that point my nose started bleeding uncontrollably for at least 20 minutes, and it was pretty scary, it was like no other nose bleed I had every had, it was just like a tap, but after it did stop I decided to tell my dad that I didn't feel very well. I showed him my leg which for some strange reason he tried to burst to get the poison out of my system, however this made me feel worse and in the end I was taken to hospital as I got to the point where I felt too dizzy to sit up and my blood sugar was uncontrollable because of the infection. If I remember rightly I spent something like 3 or maybe 4 days in hospital before being given the all clear. I was fine and it hadn't got too serious, however this wouldn't be that last bit of self inflicted stupidness I would do.

  • When I started secondary school I was pretty self conscious, I had been put onto 4 injections a day and was forced to do one in school, and was now working with my mother to decide my own doses of insulin, I would suggest what I thought I should be injecting and she would tell me if it was right or wrong and I would inject myself. Because I went to a secondary school that none of the other kids at my primary school went to I didn't have the security of being around people that had known me for years and about my diabetes. I started to get even more aware of the way I looked, wearing make-up and straightening my hair, wearing my skirt ridiculously short and thinking more and more about my size compared to other girls. However for the first time I had a diabetic student in my class, it was the first time I had met another diabetic my own age and it was something totally new to me. (I'm going to call her C) C was under the same diabetic clinic and specialist as me and was allot more outward with the fact she was a diabetic, if people asked her where she would inject herself she would never hesitate to say she injected in her stomach, arm leg and buttock whereas I would only say to people I had known for a while that I injected in my stomach and arm in fear they would find it weird to inject into your buttock or leg. Me and C would meet up in our tutor room each lunch to do our injections and then go out to lunch as their wasn't a medical room to do our injections until one day we where told we couldn't inject in the classroom or safety reasons or something and where told we had to do our injections in the toilets. Me and C where both horrified by the idea but we had no other choice so we had to until one day she said to me "This is so gross, if I have to inject in a toilet I'm not going to inject at all!" and she went off to eat her sandwiches anyway without injecting. After my experience with the sleepover and the sweets I thought that she was going to have to be hospitalised because of her daring decision and the next day asked her what happened to her sugar levels when she got home, "Not much really she said" in a casual way. I was stunned, she didn't do an injection yet she was fine, it was amazing. So I too that lunch skipped my injection and ate anyway, and sure enough I didn't die or get hospitalised, my blood sugar was a little higher than usual when I got home but I felt fine so I kept on not doing my injections and eating anyway at school.

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    As I got into the routine of not injecting at lunch with my food I tried it at dinner and breakfast too, and again my blood sugar was high but not so high I felt ill, so I started only injecting with one meal and my long acting insulin. I felt great, normal, not needing to inject with a meal, I kept thinking to myself I am that little bit closer to being totally normal! I started to not miss my primary school friends as much and started to become popular at school, even with the boys. I thought it was totally awesome, being normal makes you popular! And I stopped doing all my rapid injections with my food.

  • My blood sugar started being high on a regular basis seeing that I was only on one injection a day, but all that really happened was I felt pretty tired, that was it so I persevered. At this point I had girl friends that used to stay at my house and we would giggle about gossip and all sorts, however when we where in our pyjama shorts, or even a PE shorts and school skirts I started to think my legs where so fat compared to the other girls just like I had done in primary school, I used to spent hours looking at my tummy in the mirror and breathing in wanting my stomach to stay the way it looked. I thought that if I wanted to be normal I had to be skinny like all the other girls too. I started weighing myself 3 times a day each time at exactly the same time each day, I noticed that the way that even though I was eating normally I was losing weight, I didn't really get why thought back then because no one had ever told me about diabulimuia or the fact that when your blood sugar is at a constant high you loose weight, I was just happy I was losing weight so I started making plans so I could loose more. I starting binning my lunch again or giving it away, and stopped all unhealthy snacks and started only eating the vegetables on my plate and hiding the carbs when I ate at home with my family and ate as little breakfast as I could without being noticed by my family. My parents at this point had notice I wasn't injecting properly and my bloods where high and my long term sugar was rising so they started watching me at every meal to see if I injected, I started to get cunning at this point, turning the TV really loud so that even if I had injected you wouldn't have heard the clicking of the pen and I just stuck the injection into my stomach but didn't actually inject and insulin I just held it there, a needle in my skin.

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    I was starting to change from the good girl I used to be, I lied to my parents on a daily basis, I stopped doing my homework, I swore at teachers and because I had a constant high blood sugar I was very edgy and often found myself in a state of verbal conflict with people. I also self-harmed for the first time when a family who had been very close to me moved away and I felt that they where the last people that I had known for years and I didn't want to let them go because I felt they where my last essence of the happy childhood I had experienced. It was nothing major, but would become another problem that plagued my life.

    I had dated a few people but as I was only 11 or 12 that lasted what a week? But I started dating S (again named only S because of privacy) who had been a friend of mine for a long time and I confided in him allot. He knew about my problems with food, but not with my insulin. He would try and make me eat at lunch because I would often go for days without eating, yet he didn't realise he was doing more damage than good as I still wouldn't inject. That summer I went on my second diabetes camp, I had been on one when I was still in primary school and had really enjoyed it, I learnt allot of skills there, such as how to inject into my stomach which I was very proud of. But this summer I went onto the teenage camp, most of the people there where struggling with their diabetes as much as I was and I think that was why we where all recommended to the camp. We did lots of sports and it was good, however I became even more self conscious while I was there as some of the older girls teased me a bit about certain things which I really didn't like (who the hell would?). While I was there though I made a discovery which would change my life. Some of the staff talked to the girls about their diagnosis would was a conversation I couldn't really join because I can't remember my diagnosis, but I listened anyway. The where all talking about how they all lost so much weight and the one of the nurses explained that was because of all the excess sugar building up and making the body eat its own fat, she went on for a bit about why this was bad, but I wasn't listening I was thinking would that make me thin? She then said some girls have been known to stop their injections so they would get thin. As she waffled on I thought about this concept more. It was why I was losing weight for no reasons when I stopped doing my injections; in my mind I thought the less insulin the better! I think that all the girls that heard the convocation on the camp where thinking the same thing as me when the nurse said that as I hardly saw anyone doing injections after that. At the end of the week I stopped doing even my long term injection which till then was the only injection I actually did and sure enough more weight came off. However at the end of the week my blood sugar was so high I ended up puking violently which was when I decided that to keep losing weight, but stay out of hospital and have the doctors try and force me to inject and get fat I would have to do a small amount of insulin, so as I came home I did a few units of insulin each day and got thinner and thinner.

  • When I got back home from camp I had another blow. I ended up being sexually assaulted my S. I felt disgusting. I felt maybe I had led him on; I was devastated and ended up self harming again over it to try and punish myself. When I got back to school I told what happened to a friend who told S who denied it, and then started to make my life a misery. He told everyone I was lying about what happened and turned them against me, they where told if they talked to me they would get beats and I was left alone. The few people that dared to be seen with me would be pelted with food when they walked past people with me, and one person even threw a brick at me. I learnt that I would have to plan my way around the school to avoid seeing people that where the worst as far as the bullying was concerned. In the end I just found it easier to just lock myself in toilets when I wasn't in lesson.  My eating and injecting where next to nothing, I felt ill and dizzy all the time, I was self-harming on a daily basis, and tried to kill myself on several occasions, all of which obviously failed, I started drinking to excess with the 3 friends I had left until I puked or passed out, and I was angry all the time and my good relationship with my parents was completely destroyed, I argued with teachers all the time and even kicked a science teacher, I started smoking as I was told it was an appetite suppressant, and I would do things that I wasn't even aware of and there is a long period of my life I don't even remember because my blood sugar was so constantly high. I was mentally and physically a wreck, my parents thought I was on drugs (thankfully though I wasn't), and I had many different councillors, one of which actually gave up on me. The councillors all focused on my self-harm and anger as I didn't tell anyone about the eating, however when I told them about the insulin or my parents did they didn't care, they didn't realise the severity or the consequences of it and the fact that if they had faced my diabulimuia I properly would have been allot more mentally stable.

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    At 13 I met A, who became my boyfriend. For a long time I kept my problems from him, though it was pretty hard to, I was skipping school and my wrists where cut to shreds, my insulin stayed unused, however A did help me eat, however in very strange eating patterns, for a while I refused to eat anything but nice biscuits. Then one day I decided to tell him everything I was sobbing uncontrollably and I think A was pretty overwhelmed. I stayed at his house a few times instead of going to school a few times, his mum didn't really mind as I had got so close to his family I felt comfortable to talk round the house in short sleeves so she had seen my scars and I had talked to her about them. After a while of skiving my parents pulled me out of school and I was given a month off school for depression. In that month I did go a bit more insane, exercising like a nut and weighing myself at exactly 3:02 am each day to see how much weight I had lost, I also hid my insulin skipping and lack of eating from A, at that point I really did not get on with my own parents so I spent most of my time round A's so it was pretty hard to hide it all from A but I did manage it. I would tell A I had eaten and injected while I was with my parents, and I told my parents I had eaten and injected while I was with A. I was almost happy in my cycle of madness, I heard voices, I ate only certain foods with certain cutlery, and someone could have taken my insulin and I would have never known I never even used it. I started getting more and more angry with A, and it really wasn't his fault, I was just too insane and high blood sugared to control myself. Was stilling drinking heavily and hiding it from A who really wanted to help me but I didn't want to change and we would end up fighting and I was just run away from him to find somewhere to drink. I don't think that I was dependant on the booze I just liked the way it made me forget it all.

  • I moved to the same school as A, which made the fights to be honest even worse and more public, but we both struggled on together fighting, making up, him trying to get me to eat, me not injecting. It ended up pretty twisted. We fought so badly one day that I went off bought a litre bottle of vodka and downed the lot, ending up in hospital for the second time due to booze, they thought at one point my oxygen levels where so low and my blood sugar so high they where going to have to send me to London to ventilate me, but somehow I did pull through without the drastic measures. However looking back I was such a stupid 13 year old.

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    I am still mates with A; he said that when I had a high blood sugar it was like nuclear PMT, I even hit him a few times which I feel awful for now. The fights where so awful and I cheated, I lied, I felt like shit, and I could see very well anymore honestly it was the worst price in the world to be thin. In the end I broke up with A and that was pretty hard because I had so much emotional baggage with him but I must have messed with his head so badly on the account I was so insane myself.

    I dated two other guys after A, each one ending in disaster. And me and A at that point fought allot, I was angry all the time still because the blood sugar must have been HI on a regular basis, I even threatened to put my cigarette in A's eye. Which is an awful thing to do I also head-butted a girl I didn't get on with which was an awful thing to do. As the fights with A where VERY public in school the school had to step in with me, and they discovered my past, I confided in Mr B. and Mrs I. and they where very helpful to me, better than any of the crappy councillors I had ever had, plus I could trust them, When I self-harmed they would clean my wounds for me to stop them getting infected and Mrs. I's daughter was a type one diabetic so she was the first person apart from my parents to acknowledge the problem and help my tackle it. Even though I hated it at the time I was made to go to the medical room each lunch to do my blood sugar check and my injection and then they would watch me eat my lunch. Honestly in contrast to my first secondary school where most of the teachers didn't even know that I had diabetes, this was incredible. Because my blood sugar had been so high for so long if my blood sugar went to even 10 I would feel like I was having a hypo, but slowly and surely my blood sugars got better. I started council ling at the school with SP as well who honestly is more of a friend than a councillor. And Mr B. and Mrs I. and the school nurse SD where amazed at my progress, I don't think that all my mental problems where caused by the diabulimuia but it definitely made it worse, as my blood sugars came to being normal I could think straight for the first time in years. I could see again.

    I also made a huge discovery. As I could actually think straight I realised that I am a lesbian. It was why I liked playing more boyish games as a kid, it basically explained allot. Some people have asked me do I think it was because of the sexual assault and all the mental problems I've had. The simple answer is HELL NO. I believe you are born gay. It's not a choice because if it was the kind of thing you could choose then I guess that because it's the way you brain works then you could also decide that you don't want your immune system to attack your pancreas!

  • After working out that I am indeed a lesbian, things mentally became allot easier for me, I knew who I was, I knew I was different but I could except that now because I realised different isn't actually bad. Being a type one diabetic, yeah it's unfortunate but it isn't the worst thing in the world! Yeah I've had mental problems but allot of other people are worse off! And yes I'm gay but that's just a GREAT excuse to throw a huge pride bash in Brighton!

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    I won't lie, I've got better, but I'm still in recovery, sometimes I won't eat for a couple of days and I won't inject either. But I always come to my senses and get myself back on track. And yes I have been sectioned for a self harm episode, but I am better now and haven't self harmed for at least 6 months. Sure I'm not the skinniest anymore and my BMI isn't 15 anymore. But I'm happy and that's all that matters!

    I have never had any specialist help for my diabulimuia; I have had help from people but most of my recovery I have had to do alone. Yes I am not recovered I am still recovering. And yes I am scared of what the long term implications of my diabulimuia will be. I also sadly do not remember allot of my early teenage life. But I have learnt that I have to take each day at a time. I set myself goals. Like now my anger is controlled and I am so close with my parents now, I can tell them almost anything. And I feel awful for all I put them through. They must have been so worried about me. But when I was ill all I could see was my own pain, I forgot about everyone else. I learnt you can't do that, so I've always tried to make up to them all the pain I've caused them so I'd say that now I'm a well behaved daughter to them. I drink still, but I'm talking a glass of wine with a meal or a few shots with friends, and that's about every month if that! I also have got my diabetes controlled enough to be approved for a provisional driving licence so I can drive now! I whiz about on my little scooter I love it! I also work with all the teachers at my school and the nurse as a mentor, I help younger students, I specialise in LGBT (lesbian, gay, bisexual and transgender) students and people who have had mental health problems because lets face it, I've been there, done it and got the t-shirt and hopefully will be doing further training this summer! At the moment yes I am single but I'm happy with that, we have an amazing LGBT community in my area so I am not alone. I don't think that I want to try a deep serious relationship till I have fully recovered. I can't put anyone through the kind of stuff I put A through it's not fair. So I will wait, but that's fine I have school to focus on and of course my scooter and the animals I rescue, honestly when I started get better like a million doors opened for me, I wasn't stuck in the antisocial mess that diabulimuia causes. I have lots of friends now and I will happily talk about the fact that yes I have had diabulimuia and all the other mental health problems I had, but here is the important thing, it's because I shouldn't try to forget it, cover it up and pretend it didn't happen because it did and I am still in recovery, I will bare the scars on my wrists forever however it will also leave me with the fact that life is so precious and dying to be thin just isn't worth it.

Published On: June 24, 2009
2 Comments
  • Ginger Vieira
    Health Guide
    Jun. 24, 2009

    Steffany,

     

    Thank you for sharing this. It's incredible not only that you have the courage to share this, but the courage to endure it and work your way through these things you've experienced.

     

    You are true proof that wherever we are in our lives is temporary. If we are struggling with something or many things as immense as you have, we can get...

    RHMLucky777

    Read More

    Steffany,

     

    Thank you for sharing this. It's incredible not only that you have the courage to share this, but the courage to endure it and work your way through these things you've experienced.

     

    You are true proof that wherever we are in our lives is temporary. If we are struggling with something or many things as immense as you have, we can get through them. It's not necessarily easy EVER, but it's worth the fight, right?

     

    To a certain degree, we all struggle with a variety of issues around food because of diabetes. We have to obsess over our nutrition in order to do it all "perfectly"...but finding the balance is really hard to do. I practice at it and some weeks or months I feel more in control of my emotions and thoughts about foods than other weeks or months.

     

    I'm so glad to see in your story though that you've not only found the methods to control your diabulimia but that you've become aware of your own sexual identity too! YOU ARE A PICTURE OF COURAGE, GIRL!

     

    Coming to accept our bodies for what they are is a struggle for so many people, diabetes or not. It's a good goal for a lot of us to realize that our weight doesn't determine how much we are worth or how beautiful we are. And of course, the way other people choose to treat us has nothing to do with how we deserve to be treated, either, right?


    What do you hope to do after college? What do you love to do? Your dreams?

     


    If other young people with diabetes were struggling with diabulimia, what would you offer or suggest to help them help themselves?

     

     

    I admire you and your story.

     

     

    -Ginger

     

     

     

     

     

  • Ann Bartlett
    Health Guide
    Jun. 24, 2009

    Steffany,

    Your story is amazing!  I beleive that some of us pack in a lifetime of emotional struggle in the first half of our lives, so that the second half of life is fabulous!  It sounds like you are on your way long and happy life!

     

    You are a teacher for all ages!

    Thank you for sharing!