10 things I want my family and friends to understand about my eating disorder
'My name is Giulia, I am 20 years old and have one year left of my Early Childhood Education and Care degree. I have suffered with anorexia nervosa for about five or six years. After listening to an episode of The Recovery Warrior Show podcast, and knowing firsthand how difficult it can be to communicate about an eating disorder with loved ones, I was inspired to create this list of ten things that I wish my family and friends understood about my eating disorder.'
1. No matter how much you try to understand, or say you understand, you don’t. And that’s okay – The truth of the matter is, no one will truly understand what it’s like to have an eating disorder except someone who has, or has had one themselves. Even then, people with eating disorders have different experiences and emotions from one another. If I don’t understand it myself, there's no way I would ever expect you to understand it. So please, don’t tire yourself out trying to understand how my mind works. Also, please don’t expect me to understand how I’m feeling all of the time. Most of the time I’m just as confused as you are.
2. I wouldn’t wish this illness upon my worst enemy – I wouldn’t even wish this illness upon the person whom I believe triggered it. Eating disorders are torturous, painful and long. No matter how much grief a person causes me in my lifetime, I would never hurt someone the way my eating disorder has hurt me. Ever.
3. Please be patient, this will take a while – Recovery presents many speed bumps, some higher than others. There will be good days and there will be not so good days, with big steps and small steps. Please understand that these small steps, whilst they are slow, are major. I began my recovery journey knowing that it would take some time, and I need you to understand that too.
4. Sometimes the things you say do more harm than good – You go out of your way to make things right again, with all the best intentions. But sometimes the comments you make trigger the eating disorder voice inside my head. I understand you’re only trying to help. But commenting on how much better I look, how much food is on my plate, or how overjoyed you are after I eat a biscuit or a slice of cake can sometimes be taken the wrong way. Not by me, but by my eating disorder. Don’t stop talking to me or being proud of when I challenge myself, but maybe ask what I would like to hear, or how I would like to communicate first.
5. Our eyes do not work in the same way – The way I see myself is far from the way you see me. The effects of my eating disorder have caused my brain to see myself in completely different ways. When I look in the mirror, I don’t see the person you describe to me. Rather, my body image is distorted and I become fixated on the parts I dislike the most.
6. Expect setbacks – Recovery is not perfect. If it was perfect, it would be easy, and it’s far from easy. You can, and should, expect setbacks. Obstacles will come up. I will get knocked down and not want to get back up. I will test my boundaries, and your boundaries for that matter, to see if recovery is still worth it. I know it is still worth it. So please don’t let me stay down when I fall.
7. I DO want to recover – Despite the fact that, at times, it may seem like I don’t want to get better, I really, really do. But it’s really hard to distinguish between the voice inside my head that tells me to stay stuck in my eating disorder - the voice I have become so accustomed to, and the voice that tells me to keep pushing on - the voice of the real me. The hardest part is I have to retrain my mind to listen to my real voice, in order to fully live again. Although I often feel trapped in my eating disorder, I'm ready to live my life without it.
8. My mind doesn’t stop – Like a clock, my mind continuously ticks 24 hours a day, 7 days a week. My mind worries about all kinds of things, just as any normal person’s does, but my worries mostly always relate to my eating disorder. No matter how full I am after eating, my mind automatically starts thinking about my next meal. I’m constantly planning what I’m going to eat, whether it be that day or for the whole week. Always thinking about food is one of the major effects of an eating disorder and let me tell you, it’s miserable.
9. Just because I look better, doesn’t mean I am better – there is a quote that says “They’ve fixed my body, but they haven’t fixed my brain”. If there was ever a more relatable recovery quote, this is it. I may have reached a ‘healthy’ weight, but part of me is still recovering - my brain.
10. You are appreciated, immensely – no matter how many times I thank you for your love, support, patience and concern through all of this, I could never thank you enough. You are my biggest fans, the best support system I could ever ask for. Yes, I may not appear grateful at times. I may say hurtful things out of anger or frustration, which I am sorry for. But, I’m so thankful to have had you through the some of the toughest years of my life. You have been my shoulders to cry on, my embracing arms. You are my angels and I love you all so much.
Reprinted with permission of The Butterfly Foundation.
The Butterfly Foundation’s National Helpline offers support to all those affected by eating disorders: