01 Jun 2018

What I want people to know about my eating disorder



Today is World Eating Disorders Action Day and the theme is #WeDoAct2BreakStigma. We reached out to our community and asked them to share ONE thing they wish people understood about their eating disorder or their loved one’s eating disorder.


Kelly, 41
 – “Eating disorders know no age or gender”

Fiona, 34
 – “My eating disorder has nothing to do with wanting to be thin”

Gillian, 30 – “One thing I wish people understood was how hard it is to stop being bulimic. I remember my dad saying ‘you can stop this right now’ and hearing that was a big struggle as I couldn’t. There needs to be more awareness raised about the disorder and how hard it is to stop.”

Marshall, 15 – “To the professionals, please listen to us when we cry out for help. And to everyone please look past what you think you know about eating disorders; just because we might look a normal weight to you doesn’t mean we don’t have an eating disorder.”

Cate, 30
 – “I have binge eating disorder and I wish that people would understand that it is a REAL disorder. An eating disorder comes from within the brain and just because a person is overweight, it doesn’t mean that they don’t need the same love, help and support as anyone else who struggles with food.”

Meryl –
 “My daughter did not choose this devastating illness, nor the immense suffering it has brought to her and the family she loves.”

Mitch, 27– “Eating disorders aren’t just about food. The issues that fuelled my eating disorder were centred around the beliefs I held that I was worthless and unlovable. Recovery began when I started the road back to myself; physically, emotionally and spiritually.”

Marg – “Some people see my Anorexia as a way of losing weight and try to pick up my eating habits. This really angers me. Anorexia is not glamorous.”

Anonymous, 63 – “I feel so embarrassed now at my age and still fighting. I am 63 years old and been doing this since I was 15.”

Julia, 31 – “Remember – I was once more than this illness, and have hope that I will be again”

Anonymous – “The eating disorder that could kill me feels like the only thing that will save me. Facing food and saving myself feels like it will kill me.”

Anonymous – Eating makes me feel weak, stupid and pathetic.

Darcy, 20 – “Regardless of your weight, you are worthy of help”

Briahne – “I will recover. I’ll be back here, at this airport, soon enough for my own travels, I will be healthy, I will be ready.”

Kristen – “After developing anorexia in my late 20s in response to a traumatic workplace situation, I wish people understood that eating disorders occur in older women, too.”

 – “Eating disorders are brain-based genetic illnesses. They are not a choice, they are not caused by childhood trauma or parental wrongdoings, and they are most definitely not ‘about control’.”

Alyssa – “I struggle everyday but you can get through it.”

Braiden, 23 – “Eating disorders don’t have a certain look, they can latch on to anyone, at anytime”

Julie, 40
 – “I may have gained some weight and look healthy now, but it doesn’t mean I am recovered. The struggle goes on.”

Jo, 28 – “I was putting on weight very fast. I wish people had asked me if I was OK. People feel like being fat is shameful and they’ll embarrass you by asking, but knowing people are looking out for me has helped my recovery.”

Deb, 47 – “I wish that people could understand that this is NOT a choice! I am not attention seeking, I am not looking for sympathy, if I could just eat, I would!  Stop telling me to just get over it!”

Sascha, 21 – “I wish people had understood that just because I no longer looked underweight, didn’t necessarily mean that I was magically cured. #WeDoAct2BreakStigma”

Millicent, 26 – “At my smallest, I was most unwell. Complimenting weight loss re-enforces beauty ideals and can be incredibly triggering.”

Melanie, 24 – “I am not LUCKY to be able to spend all my time dealing with my issues. I am UNABLE to work as I cannot jeopardise my fragile physical and mental health. Saying things like that undermine my belief that I have a problem and need help.”

Samuel, 23 – “Diet talk can be incredibly triggering for those experiencing an eating disorder”

Kath, 30
 –  “One thing is too little so, here’s a few.
– I am at war with myself every day. I know I have to eat and the eating disorder tells me I shouldn’t and I debate that every minute.
– Ask me how I am, don’t tell me. When you assume or put a positive spin I feel my experience being dismissed.
– The fear and shame I feel about eating doesn’t disappear when the food is gone.”

Georgia, 19 – “Just because I’m nearly weight restored doesn’t mean I am 100% better – I still struggle mentally and it’s still a battle I fight everyday!”

Sevgi, 21
 – “Not everyone with an eating disorder is underweight. There are people just as sick who are classified as being a healthy weight, overweight or obese.”

Anonymous, 40 – “Eating disorders can and DO present in larger bodies”

Beth, 32 
– “The loneliness is unbearable”

Jess, 23
 – ” I wish people understood that an eating disorder is not a choice it’s a mental illness that you cannot always tell if someone is living with simply by their size.”

Anonymous – “I spent over 7 years fighting an eating disorder. It destroyed my relationships, career and cost me financially. Although I am now ‘recovered’, I still struggle on a daily basis with emotional scars from this devastating illness.”

– “Recovery is long -longer than one expects and  requires patience and the sustained support of the care team.”

Saw, 20 – “It is so much more than “just food”, certainly not as easy as “just eat”, then assuming that all the fears and thoughts will magically disappear. It is a decision I have to make for myself every single second, every single day”

Katelyn, 30 – “it is always with me, but I hide it extremely well. Just because I am laughing and smiling in a moment, does not mean that I am not also feeling shame, sadness and or anxiety.
It doesn’t get switched off, it just gets covered up or muted depending on the situation. People with eating disorders do not wear their true thoughts and feelings on their sleeves.”

Anonymous, 27 – “People need to know that glorifying weight loss as being aligned with personal value in the world is absolute rubbish and it can be tricky when everyone around you is in this headspace and you are trying to break free into full recovery”

Belinda, 41
 – “I wish people knew eating disorders can pounce on a person after a trauma. Mine makes life VERY cold, hard and full of bruises. With great therapy and hard work, they can get better. It’s a shame about the expense (hello, government?). They are most definitely NOT a choice.”

Tara, 38 – “I have been fighting eating disorders since I was 14 years old. Eating disorders present in all types of bodies, genders, ages. Recovery is something I work hard towards every single day. I consider it a privilege because in the process of recovery, I have been able to define myself outside of this illness, and am emerging healthy, strong and fabulous.”

Kate, 25 – ““I have dealt with my eating issues for over half of my life now. It’s not a bad habit. It’s not a choice. It’s a mental illness that presents with some physical issues.”

Kara, 32
 – “I wish people knew about the extent of loss someone with an eating disorder experiences. In the midst of illness, one’s life is put on hold while everyone else continues to grow and develop – both personally and physically. So if I seem younger than my age, it is because I’ve lost years to an eating disorder.”

Lee – “I went through a time in my life where I lost a lot of weight, I gained some of it back. But when times are tough and things are down, I am capable of losing my appetite for weeks and weeks. This isn’t a choice though. I will go through days where I don’t want to eat at all as a way of dealing and coping with things.”

Sara, 19
 – “I have 3 things I wish people knew.
– I wish people would realise that just because I’ve eaten a fear food before it doesn’t mean I’m no longer afraid.
– The immense anxiety I feel all the time around food is heightened by meal times, going out for a meal or social events. It’s facing your worst fear six times a day and it’s not something that you can just ‘switch’ off.
– Having an eating disorder is like having a nasty little demon sitting on your shoulder telling you how your not worthy enough to eat and that you don’t deserve anything.”

– “Eating disorders impact people of all shapes and sizes and there are numerous people out there who’s disorder is unrecognised. Just because someone looks well on the surface, or is able to eat a meal, does not mean that they are ok. Please be mindful of the things that you do and say, consider how these things reinforce unhealthy relationships with our bodies and food and think about how these things might impact someone that has an eating disorder.”

Kate, 26
 – “That the lies and dishonesty are not me, it’s the eating disorder. My values, goals and beliefs are so different to that of my eating disorder.”

Anonymous, 38 – “I have defeated a debilitating eating disorder. Believe that it is possible. Don’t lose hope. Life is wonderful on the other side.”

Danni, 39 – 
“Instead of words this is my artistic representation of what living with an eating disorder is like.”
All Stations To S***
I never wanted a ticket for this train
It has no break and ignores the tracks
It says it’s in control
But it’s the s****** journey I’ve ever been on
I don’t want to be on it, but it feels impossible to get off

Eliza, 27 – “Living with Anorexia is hell but recovery is painful. So incredibly painful. If someone you know is trying to recover, give them a hug.”

Mara, 26 – “That just because someone is recovered doesn’t mean they will never be triggered by diet talk or have days where all they want to do is go back to unhelpful coping mechanisms.”

Anonymous, 30 – “When I was really unwell and couldn’t see beyond or outside of myself. My eating disorder has bubbled inside me since year nine and surfaced in uni. During treatment, I always wondered how I would know when recovery was actually kicking in. I realized that there was not one definitive factor. But a distinct indication for me was when space cleared up in my mind, I stopped thinking about food absolutely ever second of the day. I was able to read again. Gradually I didn’t have to exercise everyday. The only identifiable reason for this is that I continued to go to therapy, I never stopped going even if I felt I was going nowhere. I encourage people to not give up their support networks and always hold onto hope that recovery can happen. I thought I was doomed to a life of loneliness, I convinced myself I’d be single forever. How wrong I was. Life beyond and outside of myself is so worth it.”

Allie, 21 – 
“The mind is effected severely and makes it extremely difficult to function on a daily basis, physical appearance is only one side of an eating disorder.”

Liz, 32 – 
“In those desperate times and depths of my eating disorder, I wish people knew how much I appreciated them. How much their support and unconditional love meant. It’s what got me through and continues to do so each day.”

Abbey, 18
 – “No eating disorder is ‘worse’ than another, and just because a person isn’t in hospital it doesn’t mean they are struggling any less than someone who is.”

Chloe – 
“Eating disorders are not for attention and I cannot “just eat” as much as I wish I could. I do not want this illness, I wouldn’t wish this hell on my worse enemy.”

 – “Anorexia is a thief. She will steal from you all aspects of your life. She has stolen my health, my ability to continue with my university studies, she has stolen my happiness and life to the point I’m just existing each day, she has stolen my ability to concentrate and my days have become consumed by her poisonous thoughts. She has left me so weak, numb and helpless. I don’t choose to be this way so when you tell me to “just eat” please be mindful that the war I’m fighting is far more complex than you will ever understand.”


Is there something you want people to know about your eating disorder? Please share it with us and the community, to be part of our stigma movement.

How to get involved:
Think of ONE thing you wish people understood about your eating disorder at the time or reflecting back
Send this quote through with an image of yourself, your first name and your age to danielle.cuthbert@butterfly.org.au
If you would prefer not to use an image or remain anonymous, you can still send through your quote and age.

We will upload these as they come through. Together #WeDoAct2BreakStigma!

Share your personal experience with us to help break stigma – www.thebutterflyfoundation.org.au/share-your-story

If you, or anyone you know is experiencing an eating disorder or body image concerns, you can call the Butterfly Foundation National Helpline on 1800 33 4673 (ED HOPE) or email support@butterfly.org.au or jump on our website to chat www.thebutterflyfoundation.org.au

Related tags: Experience Stigma