Eating Disorders Awareness Week 2019
My story by Jess Mell
“What are you going to eat?”, “how are you going to exercise today?”, “have you gained weight?”; as soon as I opened my eyes the constant cycle of negative thoughts and repetitive questioning would begin. My brain would become filled with doubt, insecurity and obsession, leaving little room for anything else. Walking into the kitchen I would open the cupboard staring at the breakfast options. What did I have yesterday? Would that choice meet the ‘good foods’ list criteria? Is that product going to make me gain weight? 15 minutes later, once the choice was made, I would begin the ritualistic process of selecting the same cutlery and crockery, abiding by the first of many rules that I would adhere to on a daily basis. A considerable amount of time later I would make my way back up the stairs to get ready, clutching onto the bannister, or crawling, to ease the crippling pain in my knees as my weak body struggled with each step. As I took my clothes off to get into the shower, I would take a moment to look at myself, highlighting, analysing and criticising every inch of my being before quickly jumping under the hot water to heat up my cold, shivering body. Whilst applying shampoo, I would feel the build-up of shed hair collecting in the spaces between my fingers and correlate this occurrence with my use of straighteners- just one of the many excuses I had for my wearying, damaged body. The process of getting dressed was not easy either, putting my size 11-12 years old trousers and a loose blouse on, a go-to outfit I wore for months to avoid having to go clothes shopping. Once my poor attempt at a packed lunch was prepared, I would get into the car and drive to work, struggling to concentrate on anything other than the food I had just made, how I could avoid eating it and what else I was going to be eating when I got home. The thoughts were endless and exhausting, but I had no idea that what I was experiencing was a mental illness.
I had distanced myself from friends, avoided every social event that could potentially involve food and adhered to a strict list of rules that I had developed throughout the progression of my illness over the years, yet I still had no idea that the psychological, physiological and behavioural symptoms I was experiencing were that of an eating disorder. What even was an eating disorder? I had never heard of it before. Surely everyone thinks about food, exercise and hates their body, that’s normal, right? Wrong. My obsessive behaviours had taken over my life. What started as a few thoughts, beliefs and habits, had developed into this fixed way of life and I genuinely assumed that everybody else was experiencing the same things as me. It was only when I watched an episode of Supersize vs. Superskinny that everything made sense. As Ursula Philpot exposed the daily struggles of a few Anorexia Nervosa sufferers I had this immediate moment of realisation- I was one of them.
The process to finding help had started prior to this realisation, with my parents requesting that I see a private dietitian to help me gain weight. My weight had plummeted since starting university in September 2014 and had continued to decline when I was withdrawn in December 2014. However, with no understanding that what I was experiencing was an eating disorder, there was a general perception amongst my family that I just needed to gain weight and then I would look and feel better. This belief is not uncommon, with many people thinking that if you gain weight it solves everything, and I do not blame my parents for having this mentality, as not one of us had heard of an eating disorder before, or that I was suffering with one. However, after an unsuccessful stint with a private dietitian and the crucial miscalculation of my BMI by the GP, classifying me as a healthy weight, my parents didn’t know what else to do. Then in April 2015 I was assigned a new GP and he immediately identified what was wrong, concluding the appointment with a diagnosis of Anorexia Nervosa.
This is where my story gets complicated. Day by day I fluctuated between moments of denial and frustration. I really wanted to get better, but the anorexic voice was so powerful that it controlled my every moment. The negative thoughts got louder, my weight declined even more rapidly, and my self-worth hit rock bottom. Anorexia had become my life and I had no idea, and some days no desire, to change that. To make matters worse, there was no specialist eating disorder support in my local area. Every few weeks I was seeing a gastroenterologist, a care coordinator and an NHS dietitian, but because the care wasn’t coordinated or contained psychological support, it made it very difficult to challenge the real problem- my mental ill health. I endured 6 assessments, each one roughly 2 hours long, detailing my behaviours, completing mood questionnaires, each one reducing me to tears. After every assessment the wait to see if I could get access to psychological help was excruciating, but nothing was more excruciating than the responses I received. “You don’t live in our catchment area”, “your BMI is too low”, “there is a long waiting list”; my family didn’t know what to do. Every option was exhausted, and it was at this point that I begged for a place in hospital because I couldn’t live with the illness anymore.
Fortunately, 2 weeks later, on 16th July 2015, I was admitted to a specialist eating disorder unit in Grimsby, where I had the opportunity to turn my life around. With access to support workers, a dietitian, nurses, psychologists and much more, I was able to receive the crucial 24/7 care that I needed. When I arrived, I was told that my pulse was so low that I was a few days away from my heart failing, that my blood sugars were critically low and that I had to be put in a wheelchair because I could not afford to expend any of the energy I had. But the sad thing is that I didn’t really care. I had become a shell of a person, with no ownership over who I was or how I had found myself in this position. My self-worth had diminished, and my personality had gone with it. However, my time in hospital was the beginning of the hardest journey I had ever experienced in my life, but also the most rewarding.
Correct me if I am wrong, but I think that most people assume that treatment for an eating disorder involves consuming lots of food and speaking to a therapist. I assume that because I too believed that hospital was going to be like that. I had no idea that I would have to ask for a glass of water because the kitchen was locked, or that as a 19 year old woman I would have to be taught how to eat ‘normally’ again. It was not uncommon for me to cry at the dining table due to the fear of eating a certain food, or for me to start shouting at the nursing staff because I believed I had been served a bigger portion than the other patients. I dread to think how much time during my time in hospital that I spent staring at a plate of food, shaking at the thought of it entering my body. If you are reading this and thinking how ridiculous that sounds, unfortunately, that was the reality of my situation. Everything that happened in hospital was a challenge and the amount of times I declared that I was being victimised due to having one more new potato on my plate than the person next to me was absurd. However, that time in hospital was the reason that I am the person I am today. Besides all of the work I had to do in confronting my relationship with food, my time in the unit with the heroic team of staff enabled me to confront my relationship with myself. Every day I developed the strength and courage to be kinder to myself, almost allowing me to restart at life. Thanks to the amazing nurses, by the time I was discharged on 20th November 2015, I was completely different person. Although I was just at the start of a long journey towards gaining and maintaining a healthy weight, I was well on the way to being back to myself, without anorexia getting in the way.
As I walked out the doors of the hospital, I walked straight into the doors of a day patient service in Hull, realising that this was only the beginning of my recovery journey. Where the hospital offered 24/7 care to stabilise my health, the day patient service allowed me to rebuild my independence and reposition ownership of my health back onto myself. Again, maybe a slightly alien concept for someone nearly at the age of 20 to have to learn how to look after themselves, but this was what my eating disorder had done to my life. Nevertheless, this part of my treatment created just as many challenges as I had experienced in hospital, but just of a slightly different nature. Whether it be learning how to do food shopping again or how to cook a meal, these experiences emotionally distressing, but I knew that I had to do them in order to live a healthy and fulfilling life. Unfortunately, contrary to my belief that I would get better almost immediately, I had to be kind to myself and recognise that my life was not going to be amazing straight away, I still had a long way to go. The difference is that, at this point, I had received the support and encouragement I needed to maintain the self-motivation required to fight my illness.
Unfortunately, I was let down by the lack of psychological support services in the East Riding again following the completion of my time at the day patient service, putting me at risk of relapse. However, I was lucky enough to receive support from a local charity, SEED Eating Disorder Support Services. They funded several appointments for me to see a private psychologist, which I was incredibly grateful for. Without this support I would probably still be on the waiting list for support in the East Riding! I get so frustrated by the lack of services available in certain locations and this is what has fuelled my passion to maintain my own recovery and support the recovery of other individuals experiencing the same difficulties. With support of the psychologist, my family and friends, I truly felt that recovery was possible, and I have maintained that positive outlook since the moment I was left to stand on my own 2 feet.
There is no denying that there are numerous days where I have wanted to give in and succumb to the lure of anorexia, the ease of continuing with a life a knew so well and the satisfaction of pleasing the negative thoughts in my head; but I know that is not the life I want. Recovery has been, and continues to be a challenging process, in which I am having to learn about myself and adapt the coping strategies I have developed to the changes I experience in my life, whether that be socially, professionally or personally. I didn’t ask to suffer with an eating disorder, I didn’t ask to put my mind and body through such turmoil and I definitely didn’t ask for my family to experience all of the pain, frustration and anger that they have. As with any other mental or physical illness I have good days and bad days, fortunately more of the good, but I know that what I have been through and the tools that I have learnt support me to get back up and try again. The hardest part of my journey was acknowledging that there was something wrong and admitting that I needed help, but I am so proud of myself for doing it. I feel angry that in many cases eating disorders are still not taken seriously and that treatment is not provided in the most crucial circumstances, but this is why I decided to share my story, to be a voice for people that do not feel strong enough to speak up about what they have experienced. If you are struggling, please speak to your GP and be persistent in detailing the difficulties you experience. Do not take no for an answer and take ownership of your care. Eating disorders are not about the way you look, and symptoms can present themselves in a variety of forms, but you do not deserve to live your life with the presence of any of them. There is no shame in talking about mental ill health and you have the right to receive support in order to live a fulfilling life.
I think that having Eating Disorders Awareness Week is a fantastic way to raise awareness of the mental illness, but the topic should be discussed all year round. I hope that having read my story you will realise that eating disorders are a serious health issue and require extensive support to enable recovery. Anorexia Nervosa is not about looking like a model or trying to be thin, it is the accumulation of significant mental health difficulties that manifest into seriously unhealthy eating habits and behaviours. Whatever you have gained from this post, whether it be education, awareness or peer support, I hope that you use that knowledge and act on it effectively. Recovery is possible and I am so thankful to myself every single day for asking for help, utilising the support available and transforming my life into what it is now!
If you would like to find out more about my story, here is a link to my eating disorder recovery blog, and you can also contact me on the email address listed if you have any further questions:
If you want to find out more about eating disorders, or you believe that you need support, here are a few national and local organisations to contact:
South Yorkshire Eating Disorder Association