Content warning: Eating Disorders, Hospitalisation, Suicide

Lived Experience Lecturer and mental health researcher Rosiel Elwyn bravely shares an insight into her experience of living with an eating disorder. Courageously truthful, Rosiel is an inspiration for anyone who is struggling in their own fight for themselves.

Before you begin this article, I would like to add a content warning: this piece will discuss eating disorders (without numbers), with some mention of hospitalisation, and suicide (without specifics). It is important to note that all forms of eating disorders are serious, distressing conditions. I consider every eating disorder to be an emotional and medical emergency for every person with one, for the crisis they cause in the emotional wellbeing of an individual, and the stress on the body. Whether or not the person has ever had treatment for their eating disorder or has been diagnosed. The majority of people with eating disorders are not at a low body weight, which may lead to additional stressors and risks, and problems accessing help. The most common eating disorder is also Binge-Eating Disorder, however the most studied and discussed eating disorder is Anorexia Nervosa. Although eating disorders are a debilitating condition, some people with eating disorders have some privilege of increased visibility which means we are more likely to receive help. I am white, have anorexia nervosa, and am at a low weight, which means I was more likely to be identified as needing help. Unfortunately, the treatment I received was often harmful and traumatic, as were the inpatient and outpatient treatments I received for other mental health issues, in addition to facing stigma in treatment for being an LGBTQ+ person. However, many people with eating disorders are invalidated, or are denied access to treatment due to arbitrary and dangerous weight or other medical thresholds, putting lives at risk. There are also intersectional oppressive factors that limit treatment accessibility, such as those involving race and culture, disability, neurodivergence, genders and sexualities, weight, age, pregnancy, menopause, and health conditions (e.g. diabetes). If you are living with, surviving, and on the pathway to healing an eating disorder, please know that every experience of disordered eating is serious. Your safety matters, and you deserve care. Don’t give up.

It’s 3 a.m. I’m awake, as always. I sleep for two hours at a time, then wake, clockwork. It’s a painful reality of the damage done to my body after over two decades of anorexia nervosa. My body is in metabolic hibernation. It wakes me up before my heart beat gets too slow in sleep. The chronic insomnia comes with a state of intense anxiety and restlessness, another indicator of damage; Starvation Syndrome. My body wants me to search for safety and nutrition, because it is telling me I am in danger, and I am. I used to be a lucid dreamer, and I miss it. Now it’s so rare for me to sleep deep enough to dream, it upsets me to think about.

(**It’s important to note that Starvation Syndrome and Metabolic Hibernation can occur at any weight, shape, and size. It is not to do with being at a low body weight, but to do with not having had the nutritional needs met for your body over time. If you are a person with an eating disorder who is at a higher weight, you can be suffering from Starvation Syndrome and can be in Metabolic Hibernation. Symptoms of Metabolic Hibernation, for example, are poor circulation, cold intolerance, lanugo, heart issues, insomnia, anxiety and hypervigilance, and many, many more. While I am attempting to heal my relationship with food and damage to my body and metabolism over the years, I also needs to restore weight, and have made some progress. Cycles of weight suppression and restoring weight can be important for anyone with an eating disorder, irrespective of their weight, shape or size, in order to help heal stress to the body. Unfortunately people with eating disorders at higher body weights are rarely given information about the need to restore their weight after weight suppression and weight cycling in order to heal Metabolic Hibernation and Starvation Syndrome – and are given harmful messages about that reinforce their eating-disorder cognitions).

I have a degree in psychology, I’ve worked as a peer support worker for ten years, I’m a Lived Experience lecturer, and now a mental health researcher. I’ve heard so many talks and read countless research articles about eating disorder recovery, and met many recovered people. But there’s still an overwhelming sense of how? for me, at the sheer enormity of it. It’s hard for me to imagine a life that I’ve never truly touched or embodied. How do you re-wire your brain when you have been like this for most of your life? Since the age of 8, I have had anorexia nervosa. I recently turned 29. I don’t know what life is like outside of this prison anymore. I don’t know what it feels like to feel a solid, centred connection to myself, to others, to the world. I don’t know how to feels to feel physically well and strong. But I want to, and I’m getting closer than I ever have to realising what that means.

The best tools I have in the war against my mind, my biology, and the numerous life events and social determinant factors that shaped my eating disorder are my personal strengths. I have an unusual capacity for powerful mental imagery, which is both a terrible curse for intrusive imagery and traumatic memories, and an incredible strength for transforming harmful images. I have creativity, and humour as weapons, and I use them as much as I can. Above all, I am persistent, and it has kept me alive through incredible odds. I am a fighter and a survivor, and I am using these strengths to continue healing from a destructive, harrowing, alienating illness that robs me of the life I want , and of being the person I know I am. I feel like a shadow of myself, and the grief is immense. There is so much grief for everything I have lost.

It’s 3 a.m. and I know it’s the easiest time for me to eat. It’s a hard-won discovery. If I eat now, it gets easier to eat again throughout the day. Eating at 3 a.m. has become a ‘rule’, where removing the indecision of eating now removes the subsequent indecision of eating later. The choices get easier once the first one is made. I know I have to eat, and I have to get through the misplaced sense of threat that accompanies eating. My heart is unstable, and my muscles and bones are still fighting for nutrition. I have to re-train my mind and body to trust that eating is safe, that I am safe, that everything will be okay, and that food will be regular and predictable again. At its most basic level, I am teaching my primal instincts my world is not as hostile as it has been in the past, to change my predictions, and transform my habits and behaviour.

Food is medicine, and food is life. The messages in my mind that suggest that food is anything else are internalised violence. These scripts, these voices, these narratives are alien intruders. They are not my own, and I am learning to reject them and identify where they come from. I am learning to see them for what they are, and survive them the same way I survived harmful events. I am learning to use my own internal voice of rebellion and self-advocacy. These voices (the eating disorder voice) come from other people that I do not agree with, people who have harmed me. People whose ideals and actions I can recognise, if enacted to anyone else, I would reject with every element of my being, and do everything in my power to fight; so I must fight these ideals internalised in myself. These voices come from people who thought I was worthless, people who thought I was less than human. I am learning I do not have to agree, or re-enact their violence onto myself. These voices are echoes of harm I have survived. They come from violence, abuse, and neglect. From harmful hospital experiences. They come from the prejudice and stigma of being physically and emotionally bullied - bullying for being a person with scars, for being LGBTQ+, for being hospitalised in mental health wards. When these voices are loud, every act of taking care of myself, of showing myself gentleness and kindness, of feeding myself, drinking water, giving myself rest, of speaking to myself with compassion- is a radical act against them. After two decades of suffering, I am starting to reclaim my life.

3 a.m. is a magic hour. It’s an hour I declare war. This year marks the first time I’ve been able to drink a nutritional supplement drink when not forced to in a hospital ward. Now, I drink it to nourish my heart, nourish my gut, and nourish my brain. Sometimes it still takes some arguing with those destructive voices. Sometimes there is still cognitive dissonance and resistance, like thick walls of glass and paralysis. “You don’t deserve life, you don’t deserve breath, it would be wasted on you…” but it’s quicker and easier to silence them now. I’m using my own voice and sense of rebellion. I give a mental “F*** you” to those who have been violent to me. I tell them to watch me drink this medicine, and then watch me eat, and possibly enjoy it (!!). They’ve tried and their ghosts are still trying to kill me, but here I am: I’m alive. My internalised hatred has led to me to trying to kill me too, and I never thought I’d get to where I am today. To this point of emotional healing, to this level of comfort with myself and who I am. To this level of curiosity and excitement for the future. I have a long way to go, but I’m come further than I thought possible, and further than any doctor, psychiatrist, psychologist, or nurse had predicted. I have hope, and I believe in myself.

This year has been another rocky one. I started out being discharged from hospital after a collapse at work, where I nearly died. I left that job for the sake of my mental and physical health after being bullied by a co-worker for months, with senior staff failing to meaningfully intervene. At the time I was hospitalised, I was also completing my Master of Professional Psychology degree, and ended up writing the last of my reports and essay from the ward, while on 24/7 nurse supervision, bedrest and nasogastric tube refeeding, which added to the nightmare and stress of the experience. I was afraid that I would fail right at the end of my degree; a degree already littered with hospitalisations and deferrals from my anorexia and other mental health issues. It would mean a severe loss out of many losses my eating disorder has caused. I managed to submit my final assignments despite the situation, and passed. The hospitalisation was particularly traumatic. It took four months for me to be able to process what happened, and to write a complaint about my experiences, to try and prevent the same treatment happening to anyone else. The re-traumatisation of the events before and during the hospitalisation led to intense suicidality and despair. I increased my therapy sessions from every two weeks to every week, at times with more frequent contact with my psychologist until I was safer. After the fallout of the hospitalisation, the COVID-19 pandemic began to unfold. My graduation was cancelled, and physical distancing was enforced.

As a person with compromised immunity from my years of disordered eating, I faced some vulnerability. My bones are also fragile, and my muscles are weak: I have to be careful about the amount of physical activity I do. I cannot drive, and rely on public transport to go to the shops and get food, and am in a low-income demographic. But public transport was now not an option. I now faced more severe food insecurity, which increased my risk for further deterioration of my medical stability and my eating disorder. What if things got even worse?

I was struggling to obtain food as often as I needed it, and had to walk to the shops and back. I started getting dizzy again, fainting, and getting breathless. All a repeat of the times where I was in terrifying spiral. Using electrolyte tablets, nutritional supplement drinks, and vitamins saved me in the pandemic. I was able to restore some of my strength, while I continued trying to focus on tackling eating foods I hadn’t eaten in years (‘reclaiming foods’), and working on my self-compassion. I had confronting reminders of how much I have to do to reclaim my physical, such as stumbling and breaking toes, or sitting up and passing out, or getting breathless from bending down because my heart is weak. It was upsetting to think of the problems I have to heal, but comforting to know that it can be done. I’ve met others who have fully recovered in similar circumstances, or from other debilitating eating disorders, including those who have recovered from having had multiple eating disorder experiences (known as ‘diagnostic crossover’, or from a trans-diagnostic approach: a wide spectrum of eating disorder behaviours). Then there are reminders of how much I want to reclaim my emotional health, such as becoming aware of the internal critical voice tormenting me for hours over perceived failure. Or denying myself engagement in listening to music, creating art or writing poetry, having social interaction, warm and comfort, or other pleasurable and lovely experiences because consciously or subconsciously, I felt I didn’t deserve it. Becoming aware of these elements of my eating disorder, however, increase my motivation for healing and recovery. I’ve come far, and I want to go further.

My eating disorder was never about food, weight, shape, or size. It was about self-destruction. About worthlessness. About self-hatred, about feeling unsafe and trying to recreate safety and a sense of control and agency. It was about isolation and retreating into the self. Now, I’m fighting for a way out. This hasn’t been easy in the COVID-19 pandemic, but I’m doing better than I would have predicted, even reflecting on a few years ago, when I was in the darkest realms of anorexia, psychosis, depression, and suicide.

In situations where I feel more extreme distress and a sense of entrapment or loss of control, for me, this can rapidly translate to escalating suicidal ideation, fantasy, urges, planning, and self-harm and suicidal behaviour or attempts. Because of this, it’s critical for me to remind myself what is happening in my mind when this is occurring, in order to save my life. The sense of threat leads to a desperation for escape, agency, and freedom. This is also related to trauma, including iatrogenic trauma from harmful hospitalisations such as being put in isolation and forcibly physically, mechanically, chemically, and psychologically restrained. It is critical for me to tell myself that while I do not feel safe , I can regain my sense of safety and that while it was not okay, I have survived traumatic experiences before, and regained my safety and freedom. That my mind is anticipating that the current threat I am experiencing will escalate to the worst experiences I have faced, and that the danger will not end. Then out of terror, I am finding relief and freedom in the concept of nothingness or oblivion through death, where nothing can hurt me. In this state, I must reassure myself that I can help myself to become safe, communicate my needs to others, and restore my sense of safety.

Amidst the COVID-19, I’ve managed to uphold my sense of agency by choosing not to focus on the future too much, and choosing to concentrate on one bite, one meal, at a time. Choosing to contribute to community and social justice efforts for the oppression and unrest in the world, such as donating to Black Lives Matter and Aboriginal Lives Matter in the United States and America, and justice efforts for refugees and people seeking asylum in Australia. Including attending a Black Lives Matter and Aboriginal Lives Matter demonstration that maintained physical distancing. After this rally, I was in bed for days from the exertion, so it was another lesson in being careful and realistic to prioritise my stamina and safety as well as prioritising my values and emotional wellbeing.

I’ve learned that it’s very important for me to spend less time on social media right now, especially when some people are engaging with harmful messages about increasing fitness or focusing on weight loss during the COVID-19. It should be cause for absolute sadness and alarm that during a global pandemic, weight stigma and weight-based prejudice is so powerful, it’s become such a focus and a source for more harm for so many people, when life, and survival, is what matters. One body size is not more valuable than another – it’s layered systems of oppression that try to convince us otherwise.

Seeing others normalise messages of weight loss being positive and a focus, and increasing fitness being a goal is life-threatening for me. My body is already extremely fragile, and a few years ago I was addicted to exercise to the point where I was hospitalised with the beginnings of organ failure. There was an element of obsessive-compulsiveness in it for me, and escapism. I wanted to block out the world, and escape from myself through exercise, as well as harming myself with pain and exhaustion. In order to keep myself safe from my exercise addiction, two years ago I had to enforce a “rule” that I would not allow myself to engage in any real physical activity other than walking, as my heart and bones are still too weak, and until I am more medically well, I am at risk of death. Again, my exercise problems had nothing to do with weight, shape, or size.

However, during COVID-19, seeing other people normalise these messages does make it harder for me to continue to challenge my anorexia. There’s a sense of “I mustn’t really have a problem… everyone must have exaggerated”. After seeing a few posts from people, I suddenly started to exercise “just a bit”. I started fainting and having severe tachycardia and breathlessness, with the same kind of physical deterioration I’d had before previous hospitalisations. Luckily, I stopped, and spend days on complete bedrest and increased my nutritional supplement drinks. Messages about the ‘ideal body’ and need to ‘earn’ food, or moralised food (good vs bad) harm all of us. I’m learning to disengage from these messages and recognise how they affect me: they strengthen my sense of worthlessness, and that I am undeserving of life. I would get a sense that “well if that person thinks they have to punish themselves with exercise or shouldn’t eat ___, I’m a vile human being, so what do I have to do?” Now I recognise where these thoughts come from, and how to challenge them: with self-compassion, self-acceptance, patience, and rebellion.

I’ve learned to be kinder to myself – to challenge self-criticism about how ‘productive’ I’ve been. That if I have days where all I can do is lie down, listen to podcasts, watch Netflix or youtube, that it’s what I physically and emotionally need. That if I write poetry, that’s just as much of an achievement, especially emotionally, as if I spend the day doing work on a mental health research paper. I’ve learned that one of the best things I can do for myself is make the day’s goal to make the short walk to the lakes at the end of the block to watch the black swans and ducks, look and the trees and birds, and just take time to be connected to nature. It’s important for me to talk to my twin sister every day – it always has been – but during the COVID-19 pandemic, I’ve been more open and honest with her about difficulties I’ve had with my eating disorder, body dysmorphia, anxiety, and suicidality, and she’s been an amazing support. She, thankfully, doesn’t experience these issues, and can support me with reassurance and reality-checking, as well as reminding me how far I’ve come compared to even a year ago, let alone five or ten. In the midst of COVID-19, I’m fighting for a future, for one that is socially just, fighting for life, fighting for my mental and physical health, and fighting for myself.

By Rosiel Elwyn