Disclaimer: This is a personal article written about my own mental and physical health challenges and does not reflect everyone’s difficulties. Each person finds recovery through different strategies so any mentioned challenges relating to professional help are purely my own thoughts that I am sharing, and I know many other people will differ in what they require.
The 26th of February marks the start of eating disorder awareness week 2024, and whilst an estimated 1.25 million people live with an eating disorder, it remains one of the most highly stigmatised mental health conditions of all.
So, it’s about time we talk. Talk about the lack of awareness surrounding eating disorders, the lack of government funding to adequate eating disorder support hubs and mental health facilities, and the huge amount of societal stigma, which together all contribute to many people with eating disorders not receiving the help they desperately need, with studies showing both perceived fear of disclosure and healthcare barriers contributing to this low support rate. Being the mental health condition with the highest mortality and morbidity, and with rates rising over recent years, along with inadequate waiting times to access urgent healthcare, we need to start the discussion now. So, for eating disorder awareness week 2024, here is my story.
I have suffered from an eating disorder for seven years now, with most this time being either in denial, or suffering alone from fear of speaking out about my problems. As a 21-year-old with major depression, generalised anxiety disorder, OCD, and an eating disorder, it hasn’t been smooth sailing, and only now, after years of battling my own brain and almost everything in my life, I feel I have gained enough awareness to overcome my fear of what people will think, how they will consider me differently in the light of my diagnoses. Because really, I am not my list of diagnoses, I am a person, the same as each and every other, and in my opinion, me, and every other person fighting an eating disorder or mental health condition, we are the strongest, bravest lights, because we are recovering. We are survivors.
Perfectionism, Control, and my Body
Many people with eating disorders have perfectionist personalities, me included, with studies showing a clear link between this trait and disordered eating. For me, I had always had an urge to never show fault, failure, or that I could break, and would internalise any slight failure inwards to my self-worth. Personally, this was linked to being labelled the “smart” person. Being the clever one in the room is all well and good until you start to evaluate your self-worth with perfectionism, and I started, from a very young age, to view myself, my entire worth as a human being, through the lens of what others expected of me. How I had come to expect myself. This trait is also found in many with OCD, which shows high co-occurrence to eating disorders, which for me fuel both my compulsive tendencies and need for control. This desperate need for control sadly became centred on my body. The body which allows me to breathe, move, laugh. My beautiful body which enables me to live was becoming the centre of my hate. Taking my anger, my fear, my guilt, all out on the one thing that keeps me alive.
People with anorexia nervosa, similar to other eating disorders such as bulimia nervosa and binge eating disorder, do eat (contrary to many lay perspectives). If we didn’t eat anything we wouldn’t be here, and this is why education around eating disorders is so crucial, because as a society we are so ill-informed. Where the damage starts is the excessive, compulsive need for control, finding that one thing you can control, your food intake and body size, you seize onto. Like a life vest when you’re drowning, many people with eating disorders cling to this “ideal”, this ingrained belief that drives their disorder. It has taken me seven years, seven years of feeling exhausted to the point of breaking by the constant conflict in my head, to realise that somewhere, I do love my body, and whilst I may not love myself as it is quite yet, I am in a stage of recovery where I can look forward and treat my body with the kindness it deserves. To allow it nourishment, to allow it to heal, to treat myself to food which was once “banned” due to restrictive eating habits.
So dubbed “unhealthy” foods give us so much more than calories, they come with freedom, with socialisation, with pleasure, a huge reason why eating disorders have so much impact on relationships and socialisation. And for anyone suffering too, recovery is the scariest, best decision you will ever make, because it allows you to breathe again. To let go of that control and realise you are okay, that you don’t need to be perfect, and you don’t need to take this need out on your body. To regrow the relationships, with yourself and others, that you lost.
A plea to others: The stigma needs to stop
For anyone suffering with an eating disorder, comments surrounding food, weight or body shape can be utterly devastating. Please, take my word for it. Before I started recovery, when I secretly knew I had disordered eating but was too scared to say, these comments only fuelled my disorder. Not only did they hugely increase my guilt, guilt that I hated how my body looked but could not break my compulsive patterns to gain weight at that time, but for someone in such a vulnerable position, whether that is because you haven’t started recovery, or you are at early fragile stages, these comments can also fuel the disordered thoughts, giving validation for the restriction in food and weight, spiralling that part of your brain that longs for control. I have had disordered eating for years, I was so young, so vulnerable to influence, so unaware of how much life I had left. And most of all, too young to be aware of the consequences of this condition.
During this time l, I have experienced people tell me I’d be attractive if it weren’t for my weight, like that defined my entire worthiness as a person, throw “anorexic” in my face like they were commenting on something as ordinary as my hair, and physically cup my wrist to show how small I was. Whenever I go anywhere, even now, the first thing people notice and remark on is my thinness, as if that is a personality trait that sums me up. Whilst others get “kind” or “friendly”, I am the “skinny” one. To everyone out there: that is not a personality, it in no way describes me as a human. I am so much more. Looking back now, acts like these have such detrimental effects on young people, things like this stay with you, and whilst they have no effect on me now, it has taken time to truly let go of other people’s opinions of me and my weight. Whilst flippant, I implore people to think about the language they use towards others, because comments such as these depreciate self-worth, and I have felt this long-term impact, and I am by no means the only one. Anorexia is not a joke. It has a plethora of physical health consequences, and whilst younger me was not aware of these long-term impact I was potentially causing on myself, I am now at a point where I am not so blinded, and I can see my future again more clearly, which allows me to realise how much of a detriment I will cause myself physically if I continue down this path.
More recently, I was rushed into hospital a few years ago due to a gastric infection, and on admission as the nurse rushed me off, she looked down at me and said “Hunny, do you eat?”. To this day I cannot believe that any healthcare professional who has had mental health training would speak to anyone in that manner. For anyone, this is a condescending comment which may cause offence, but for someone recovering from an eating disorder, comments like these, the ones which people often don’t even consider before they speak, can be honestly so damaging. It takes time to undo what comments like these can do to a vulnerable person, and in a hospital setting, everyone should feel safe to disclose mental health problems, and yet I felt more ashamed, embarrassed, and guilty for my body image than I had in years. There is urgent need for more mental health training amongst staff in healthcare if we are going to become a society where people feel they can seek help. No one should have to live the consequences of another person’s words. Especially when it is so preventable.
Now I am in recovery, I internalise negative comments about my weight less, and I find it easier to let go of passive regards for my thinness. However, I am not in a place where I am immune, and the comments keep coming. When I sit in a restaurant, I often get passive remarks about how “healthy” I am, which is entirely untrue and to me shows how little people consider mental health in day-to-day life if they have not experienced it personally. Alongside anorexia, I have orthorexic tendencies and can say excessive healthy eating is not “healthy”, and I have come to question what this term actually means, or whether it is truly beneficial for anyone or merely serves as a stereotypical norm. but as soon as I allowed myself to choose a desert, which I can say for anyone with an eating disorder is such a positive step in recovery, I would then get an onslaught of comments of how that wasn’t “me” and fake shock that I, a fully grown adult could possibly eat this. For me, having spent so many years hiding my eating disorder behind “healthy” eating choices, becoming labelled as the “healthy” person is something that has really made it difficult at times to recover, and has sent be into relapse during recovery many times.
What makes me most sad, is that during many of these occasions, I was truly proud of myself for showing so much courage and eating all these “banned” foods whilst actually learning to slowly enjoy food again. When someone says these things, it starts that rabbit hole of guilt, the urge to restrict later to make up for this forbidden treat. But also, it is just so isolating. Comments like these automatically make me feel like I am suddenly separate from everyone else, everyone who is allowed to enjoy food, and then this arbitrary label, something with no true value, makes me equate myself to this one word. I honestly do not believe that these people mean to cause distress, they are such passive remarks I truly don’t think they even notice the slight change in me, how afterwards my confidence shrinks just a little bit more. But this is the reality. And without raising awareness and starting the conversation, we cannot hope to get society to change. Whilst negative comments by people, especially those close to you, have such belittling outcomes, other types of remark are as, or possible more, destructive. Common amongst those with eating disorders, is the positive comments, those when people can see that you are clearly still underweight, but they act as if they could do with a piece of eating disorder too, to help them become skinny. Eating disorders are serious.
They can be fatal, so please do not mock anyone with an eating disorder or pretend that they are just a laughing matter. I have spent so many years of my life never being content, never truly showing myself love, and honestly until this stage in recovery from my mental health, I wasn’t truly sure I had a future, so please speak with kindness, show concern, and compassion, and realise that what you say does have a lasting impact. These comments have stayed with me and have shown me how powerful other people’s voices can become over your own. Comments like these have lasting impacts long after they are made, so I implore everyone to be kind, and acknowledge the importance of awareness around this issue. Reducing discussions regarding weight and food is included in Beat’s advice for those supporting a loved one struggling with an eating disorder, and is an invaluable resource for tips on how to be supportive.
My experience with the healthcare system for support
When I first lost weight, I had been on a specialist refeeding diet, and whilst I place no blame on any professional during this time, I have so much trauma from that experience. I still get vivid memories from that time that ruined my relationship with food, ruined the trust I have in myself, and most of all, added to the sense of control I desperately now cling onto for survival. Looking back, in a completely physiological sense, and I appreciate for my own safety, I did gain weight. But the rapid speed of this process, and neglect of follow up support, left me totally adrift. I was a vulnerable young female, with no support professionally, with complete loss of what a normal diet consisted of, and no trust in myself, hating my new body because I hadn’t been given the time to adjust, or the therapeutic support needed to accept such a rapid change in myself. Since this time, it took me years to appreciate the impact of this experience, and it still devastates me that even just a slight increase in mental health awareness amongst professionals may have had such a huge impact on my later experience. After so much silence, trying to fight this battle alone and in secret, I opened up last year.
Being more aware, I finally felt like it was time to speak up, and I finally, after all this time, started to realise I had a disorder, and believe that it was not my fault. It honestly makes me so sad to think how potentially different my life might have been if I had not internalised my pain so much, if I had been told back then that this was not my fault or had been shown compassion or directed to professional eating disorder help. Recovery is the time that you need to tell yourself “F*** it, it’s going to be hard, but without it I might not have a future. So yeah, it is going to be hard, and at some points I will feel worse than before, but I’m going to do it anyway” And it will be uncomfortable, and you probably won’t like your body for a while as it changes. But the freedom, the happiness of living again, is so much better. And you will learn to love your new, ever-changing body as it is. Finding comfort in uncertainty is something that I still struggle with, and each day for me is still hard, but I am keeping going because I want, and need, the end goal because I am so tired and sick of missing out on my own life, I have already lost far too many days.
Only last year did I start seeing a dietitian for my eating disorder and started to challenge myself through cognitive restricting and exposure therapy. Despite my efforts, and I can say I can be proud of how far I came alone; I did not need to battle alone. Suffering in silence and fighting a battle without asking for help is lonely, and unnecessary as there is help out there, even if it seems there isn’t. Professional help can be daunting. And from my experience it can be devastating. But if you find the right person, it can be the one thing you need to get the help you finally deserve. And if you seek help with a therapist you don’t match with, have the courage to speak up, and find another because there will be someone you click with. I am so thankful to myself that I had the courage to seek help despite my past experience, as without it I would not be writing this now. Recovery was the hardest decision of my life, but it was the decision that saved my life. And honestly even on hard days, it still remains one of the best decisions I will ever make. Now, under a dietitian and a psychiatrist, I realise that the scariest things, the ones we don’t want to do, they are the things that matter. I was so scared to ask for help, scared of having to let go of all my safety nets.
So, how do I feel now?
It has taken me far too long to realise that my eating disorder is not my fault. It has taken me even longer to own my diagnosis and not be ashamed to speak up about it. And it still scares me, even writing this now and opening up to the world is terrifying, but we can and must do hard things to raise awareness. None of my illnesses or struggles define me as a person. They do not own me. I have had so long of being put in a box, labelled as the “healthy” one, seeking perfection, having comments thrown my way, and I am tired of it. I no longer care what people think because they do not understand. They do not understand that I have fought every day to be here, that I am strong, that I have a myriad mental health problems that don’t make me weak. And to anyone else struggling, we are fighters, and we will get there. Challenging an eating disorder, a mental health issue or a physical illness is hard. It can be so tough you may not think you are strong enough sometimes. But we were made to do hard things. And the reward at the end is worth every single second of hard work, trailing to doctors’ appointments or therapy offices, because I get to live again.
Food is more than sustenance, and the mental hunger I have had for so long I am finally starting to listen to. And for anyone with an eating disorder, the urges for “banned” food we are all so scared of, when you start to allow yourself more food, and nourish your body, they will pass too. My biggest advice to anyone suffering from an eating disorder is to treat yourself like you would treat little you. Because that young, carefree little person you would give anything for, and you would never deny them of freedom, of opportunities, growth, or nourishment. So, if it is currently too hard to recover for you, recover for them. I look at a photo of little me each morning, and I challenge myself to my fears for her.
I am not writing this under a guise that I have finished recovery by any means. I am only at the beginning of my journey to self-acceptance and reaching freedom, but I hope this gives anyone out there reading this and struggling hope that they can also find the strength to as for help. And more than anything, I hope this educates those not affected to act, speak and treat others with kindness, and to be aware that eating disorders are not something to be taken lightly. To give everyone an insight into the true reality of living with this debilitating condition, very far from the idealised notions that we are just thin dieters which everyone could do with a piece of. It’s time the stigma stops, and the kindness increases. And more than me, I want the next generation to live in a world where we do not idealise life threatening conditions, and one where we certainly don’t blame them for it.
We are all beautiful, are you are beautiful too.
If you or anyone you know if suffering with an eating disorder, please speak out and get the help you deserve.
Beat Eating Disorders helpline UK: 08088010677
National Centre for Eating Disorders: 08458382040
Men Get Eating Disorders Too: www.mengetedstoo.co.uk