25 February 2014

Eating Disorders Awareness Week

Just under two years ago I made a post for Diabetes Awareness Week. I wanted to raise awareness about an illness that has a huge daily impact on my life, but is engulfed by misconceptions and stereotypes. 
Two years later I want to raise awareness about another illness that I have struggled with (and was struggling badly at the time I did that first post) - one that is equally buried in misunderstanding. This week is Eating Disorders Awareness Week, and the aim this year is to try and address misconceptions. Eating Disorders are not about vanity, selfishness, and they are not a choice. They are complex mental illnesses, often linked to deep underlying issues. For me, it is closely interlinked with both the physical and mental impacts of having Type One Diabetes, among other things. Food is the symptom, not the root. The diabetes factor is another reason why I want to share my story; there is so little awareness of how these two illnesses interlink. 
The below piece is in the current issue of the Exeter Student Newspaper Exeposé (although I have changed slight parts), and I know some people have already read this. It was their amazing response that gave me the final bit of courage to post this - I confess I am quite terrified! I am aware of stigmas, probably one of the reasons I have been so closed about it in the past. Nevertheless, it is something I want to do, not only to refute some of the common misconceptions about this illness, but also to share my experience of recovery, with the possibility of helping others struggling with this illness.
I am not weak because of my past, I am strong for deciding that it will not define my future, and can maybe even make a difference for the better.

“I tried being anorexic for four hours, and then I was like, I need some bagels”. I read this in a magazine interview last year, and it epitomises one of the most common misconceptions about eating disorder - that they are a choice. I have been hesitant to discuss this topic openly before; this partly stems from my determination that University could be a fresh start, but also a fear of the stigmas that are attached to it. Nevertheless, as part of Eating Disorders Awareness Week, I want to use my experience, as someone in recovery for anorexia, to unveil the awful realities of this illness, but also show how much possibility lies in recovery.

I have seen celebrities quoted as speaking of their “anorexic phase”, or how they starved for a film role until they decided to start eating “normally” again. However, this projects the myth of the ‘diet gone wrong’, suggesting EDs are rooted in actions. It is a mental illness; disordered eating is the symptom of far deeper issues, often rooted in perfectionism and self-doubt. If it were simply a phase, thousands of people would not die from it, or only 30% reach a state of full recovery. This illness is far more complex than simply deciding to “eat bagels”. It requires so mush strength, and support/understanding is vital.

My own experience of an eating disorder, for example, is strongly connected to my Type One Diabetes. The two illnesses are, by nature, quite similar. Both place a large focus on numbers and food; nutrition labels and carb counting have been part of my normality, as long as I can remember, while many foods such as pizza, sweets, and even bananas were “off limits”. I vividly remember a dietician saying I could only have 10 chips or 10 grapes at a time, so the lunch lady used to count out the individual chips onto my plate! When I went onto the insulin pump, at the age of 11, it was supposed to enable me to be more liberal around food choices; however, this never really happened, and I realise now how unnecessarily restrictive I was. I also experienced years of media info that often failed to clearly distinguish between Type One and Type Two diabetes; consequently, low fat diets and the 'dangers' of saturated fats (scaremongering at best) were prevalent.  

Diabetes also exacerbated inherent traits of perfectionism and self-doubt. I have always been fastidious in maintaining good blood sugar control, but my feelings of failure, when seeing high blood sugar readings, intensified as the years went on. It was during my GCSE years that I consciously reduced my carbohydrate intake to try and stabilise them, and this was the catalyst for what became a severe eating disorder. I spent my Lower Sixth in a vicious cycle of carb restriction and purging after meals, and by the start of Upper Sixth this had developed into Anorexia.

I was in denial, pushing myself to extremes to perform well at school, undertaking a number of extra-curricular activities that would have been excessive even for someone in a healthy physical/ mental state. My underlying blood sugar was worryingly low and this, coupled with malnourishment, deeply affected my cognitive functioning. I strove to create the “perfect university application”, my dream being to apply to Oxbridge. The paradox of the illness is that it convinces you that you are in control, but you in reality you grow more and more powerless.

The damage I was inflicting on my body makes me horrified to this day; when I first sought help, after my AS levels, I had electrolyte imbalances and worryingly low blood pressure. Yet it was only a series of reality checks - being told I could not apply to Oxbridge, discussions of inpatient treatment (which would mean leaving school altogether) and seeing how much my family was suffering – that I actively chose to recover in November 2012. I pushed myself to end the vicious purging cycle (this was one of the toughest things I have ever done, but I am proud to say I have maintained, with no slips, for over a year now), and over the following months gradually increased my calorie intake to gain back to a healthy weight. I used my offer from Exeter as a concrete goal; the fear and guilt were temporary, but my future was fixed in being healthy enough to live it.

(above) The day we got Millie
               (below) nearly a year later
My experience has opened by eyes to the worrying shortage in treatment, both specifically related to Diabetes and Eating Disorders, and as a whole. While some resources are incredible, far more support, and understanding, is needed. I did have a treatment team, but it was very black and white; the options seemed to be either a self-motivated recovery, with minimal support, or enter an IP unit. The therapist I was given also had little knowledge of diabetes, and this is where the incredible support of my diabetes nurse was invaluable.

I am hugely indebted to my family (this includes my puppy) for the past year. Eating Disorders place them in a catch-22 position; when they try to force the issue, even someone committed to recovery often becomes defensive and more introverted; the line is so fine that it is almost impossible to tread. My family were incredible, my dad would bring me home from school, sit with me after meals, my mum came home every evening to make dinner (where, at the start of recovery, the littlest thing would have me in a panic) and was there for me emotionally. She was also the one person who unequivocally supported my determination to stay in school and get to Exeter. Our puppy Millie was bought to 'help save me', to quote my mum. She did, she offered me comfort and a motivation to get healthy enough to walk her and truly help look after her. In terms of my diabetes, my family have all been incredible; they have been there for countless hospital appointments, the horror of a failed infusion set and sky-high overnight blood sugar. It deeply upsets me when people pass judgement on families, with regards to Eating Disorders. You cannot fairly do this, without being in that situation; this also holds true when labelling people with Eating Disorders as selfish, or attention seeking.  Everyday, I still feel overwhelming guilt for what my family went through, but I never knowingly hurt them. It was largely due to my fear of hurting them, that I avoided seeking help sooner.

Eating Disorders upend logic. My distress over eating, blood sugar highs and weight gain, irrational as they may have seemed, became so real to me in my increasingly malnourished state. I genuinely believed that an extra gram of carbohydrate would send my blood sugar rocketing. My self-worth became concentrated in the number on a blood sugar meter or scale. The fear of weight gain was not rooted in vanity. When my refreshingly honest friend told me last Summer that I looked “so much healthier, thank god… you looked horrendous!”. She’s right, I did. No person losing weight to “look good”, would have chosen to look like I did.

 I am reluctant to use the term “the eating disorder voice”, as it can aggravate the ‘mental illness’ stigma. Nevertheless, nearly ever person will have experienced moments of insecurity in their lives. With an Eating Disorder, imagine a near-constant stream of these negative thoughts. You become consumed by a paranoia that you are undeserving, or that people will judge you; the tragic irony is that food and weight become the outlet for these emotions, yet the resulting malnourishment only magnifies them. Moreover, when people dismiss those with mental illnesses as ‘irrational’ or ‘messed up’, it only increases these feelings of unworthiness. Recovery is about choosing, everyday, to go against this distorted ‘reality’. In my case, this was also not necessarily the reality I lived with for ten years prior to the eating disorder. I have to try and grasp that many of the ‘diabetes rules’ I had were grounded in misinformation, both by dieticians and the media. I now have facts to help me: in the last year I have eaten former “off limit” foods such as bagels, doughnuts and *queue gasps from my old dietician* I ate my first banana in memory… not only am I still here to tell the tale, but my blood sugars did not go out of control!

I cannot ever truly escape numbers; I will always have to carb count, and will inevitably experience blood sugar highs and lows. But they do not have to define me. I am not a blood sugar reading. I am not x number of insulin units. I am also not a weight, or x number of calories, carbohydrate. I am not a grade. I am not a percentage. I am me. And, at the heart of this illness, that is where the greatest challenge lies – accepting that the simple state of being can be good enough. It is a process that takes time and not being ashamed to ask for support. At my Leavers’ Dinner last June, I was at in a strong place with my recovery. However, the meal that was served did provoke anxiety, and my friend observed how I suddenly went from carefree and smiling, to withdrawn and anxious. I think, in that moment, she got some insight into how powerful this illness is. With some support from her, I ate the meal and that was another step forward.

With so much misunderstanding of this illness – beliefs that it is a choice - those suffering can often feel unworthy of help. If you are reading this, and struggle with an eating disorder in any form, you did not choose or deserve this. To give some blunt examples, I do not believe anyone would choose half an apple with a candle in, as their 18th Birthday ‘cake’. For this birthday, we went to Disneyworld and Harry Potter World at Universal; I was an utter misery the entire trip, dominated by the eating disorder. I was also given “the only thing I had ever really asked for” – a puppy. I adored her, yet it would be months before I would be strong enough to walk her by myself. The first time we took her out on a lead, I only stayed outside a matter of minutes, because I was so cold.

What you can choose, and do deserve, is to fight back and say "I am the author of my own story". Last summer, I took Millie on her afternoon walk nearly every day. I made cupcakes for my sister's birthday and happily enjoyed them with her, and I had proper cake on my 19th birthday! It is the small things that capture recovery so much. For example, when my sister and I went for Afternoon Tea last summer, and she said how incredibly strong I was.  Things like this remind me that she understands how real this illness is, but also helps to give back some of the self-worth that the Eating Disorder stole. She is amazing, always so supportive; she did not deserve the torment this illness created. Whenever I have moments of doubt, or fear, in recovery I remember how much it has given me, in terms of getting my family back and being "Sophie" again.  My friends were equally wonderful, and going to Disneyland Paris last June, after exams, was the most incredible experience (although I was wracked with guilt that the Disney holiday with my family had been so different); it symbolised for me how far I had come. I smiled more in the last few weeks of sixth form, than I did in the whole two years prior to that!  

When I see photos of me when I was very ill, I don't see the severity of the illness through the size of my body, but in the emptiness of my eyes - I was surviving, but I was not living. It is not that I don’t look in the mirror now, and find fault with what I see. It is that I can now look beyond this, and see the life in my eyes and a smile that isn’t a facade. Furthermore, I realise that, even at my lowest weight, to the Eating Disorder it would never be enough. I genuinely saw myself as bigger on the verge of inpatient, than I did last summer or now. The only weight that will be ‘low enough’ for anorexia, is the one that places you in a coffin. So why chase what can never be, when in doing so you sacrifice almost everything else?

Nourishment isn’t a magical fix, but it makes fixing possible. The eating disorder, quite literally, starves you of the chance of living. From being on the brink of a hospital admission just over a year ago, I gained health back, achieved my predicted A Levels, and am now at University studying the subject I love. I am still anxious around food/diabetes control, but I am more scared of losing all the things I mentioned above. Recovery is not 'perfect'. There are times I struggle more; recently a family bereavement and more unstable blood sugars have made things difficult. I am still 'recovering', and have a way to go in terms of truly letting go. However, I endeavour to wake up everyday with the mindset "I deserve health, I can have health" - the 'I can' mentally, always. Even before the eating disorder developed, I genuinely could never truly smile - it was always quite forced! In the past year, as cheesy as it may sound, I have learnt how to smile.  I discovered the beauty in possibility, in truly living.                                   

I hope that if, prior to reading this, you did believe that eating disorders are either a choice, or easily ‘cured’; I hope you realise that this isn’t the case. To me, Anorexia is as real an illness as Diabetes. I did not choose either, but what I can choose is not to have my life defined by them. I also hope that if anyone is reading this, who struggles with an eating disorder; I hope that it shows recovery is possible; it is hard, but health, freedom and life you gain is incomparable.



  1. This was a really lovely blog to read, I am currently in recovery early stages after a couple years and relapse, my friend actually text me and told me about this blog and how it opened her eyes which I think is so great and just wanted to thank you, you should feel so proud that you actually have made a difference and allowed people to understand eating disorders that bit better. Its also nice for me to read something motivational as never really hear that many positive recovery stories, and I glad you seem genuinely happy :)

    1. This was so lovely, thank-you! It makes me so happy whenever i hear someone say they are in recovery, regardless of what stage - you have chosen the path that will allow you to truly live, never turn away from it :) I am happy, i have my hard days and certainly want to gain further health and happiness, but i am in such a better place than i was! My outlook is totally different, i believe in the possibility of something better for my life, and will never turn away from that. I wish you all the best of luck in your recovery x

  2. This is amazing!

  3. sophie, you are truly an inspiration. so proud of you and am so happy you are enjoying university and so enjoying your life because you deserve it xx

  4. A very brave blog, thank you for sharing your story! :) As a dietitian I am sorry to hear that you've had such a bad experience with your t1 diabetes care and dietitians. One of the first things i learnt as a student was that your insulin regime should fit around your eating and not vise versa. An awareness of the foods that you eat and your blood sugar is important yes, but there should never be "off limits" foods. Well done for achieving this balance now, everyone should be able to have an afternoon tea and cake on their birthday (diabetes or not). Well done again! :) xx

  5. Wow. This was amazing. I actually have mutual Facebook friends with you and saw this on my newsfeed so read it. I had Anorexia aged 12/13 and am now recovered. However, everyday I think about food, my appearance or perfectionism so I know how hard it is. I think you are such a brave individual for sharing this, to this day my eating disorder was hidden from my grandparents and extended family members. Unlike you I have never had the guts to tell people about my experiences, only 2 people know who I don't really see anymore. Thus anorexia is really a shadow I try to hide from (probably due to my peer's reaction at the time of my illness). I think you are an unbelievably brave young woman, truly truly inspiring. I genuinely can't stress how good it is that people like you are spreading awareness of this terrible illness for people who are too scared to (for whatever reason). I only hope that one day I can be as brave as you. I wish you every success with the rest of you recovery, from the evidence of your great fortitude I'm sure you won't let this illness plague you for the rest of your life.

  6. True inspiration you beautiful girl

  7. Such an inspiring story Sophie, I'm a T1 diabetic myself and have had a rough time with food. It is almost (unfortunately) inevitable that we end up with negative perceptions of food, classifying as good and bad. It is not recognised enough by the medical profession, we are expected to live such regimented life styles! Anyway, I would definitely encourage to keep writing here as it is inspiring to say the least :) Best wishes x


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