We Asked People With Eating Disorders To Share What They Wish Other People Understood About Them, Here's What They Said
"It's a struggle that will most likely last the rest of my life."
This week is Eating Disorder Awareness Week. This inspired us to ask members of the BuzzFeed Community to what they wished people understood about eating disorders. Here are their experiences.
Warning: Some of these stories include graphic details, and might be triggering. Eating disorders come in all shapes and sizes, and there isn't one "typical" experience — it's important to create a safe space and have a dialogue, as this topic has been stigmatised for so long.
"When you have an eating disorder, you can have a really warped sense of reality about your appearance. People who look dangerously thin to outsiders can genuinely look at themselves and think they are overweight because their brain messes with them. Obese people may not know they are obese, it can affect you regardless of what the reality actually is."
"It’s exhausting. It’s affected relationships, my skin and nails, my hair is thin, and my heartbeat is irregular."
"It’s more than likely not something that ever properly goes away. I may be doing well but at any given point I could have a relapse or breakdown. I will always struggle with my weight and to a point my thoughts around food and eating. It’s a painful truth but it needs to be acknowledged."
"An eating disorder can extend beyond not eating or binging/purging. Everything I eat I feel guilty about, and that guilt constantly lives in my head."
"People with eating disorders may have certain food rituals at mealtime that make them feel safe. Don’t comment on how people eat. You never know what they are dealing with."
"I wish people understood that my anxiety levels are higher most of the time because FOOD makes me ANXIOUS. I'm still working on my relationship with it and it can be frustrating when I see my friends just eating normally when sometimes I can’t even think about it without spiralling."
"I wish more people realised that EDs are often symptomatic of other mental illnesses. I have OCD which led me to develop anorexia to regain control. l when I felt like I was powerless over my own thoughts. EDs are almost always about much more than just being thin."
"Overweight people can have eating disorders where they don’t eat and over exercise JUST like thin people. Shaming people for being overweight can make it worse."
"I wish people realised that you don’t choose to have an eating disorder. And more often than not it’s not about what you look like, it’s about control, and that’s how it manifests. Trust me when I say that we don’t want to have an eating disorder either, so we need support for our recovery."
"The dysmorphia can partition your brain away from reality and you can physically see yourself as however you feel you look. I stand in the mirror and I physically see myself as obese and flabby. My partner was mind blown when I explained it because he sees me as active, fit, and sensually curvy. My brain will not allow me to see myself that way. The dysmorphia is an actual distortion inside your brain so even if you look healthy, your mind can’t take in that reflection because the belief in the opposite is so firmly rooted in your subconscious."
"An eating disorder does not need to happen every day for it to be a disorder. In my head, my bulimia wasn’t a big deal because I wasn’t purging every meal of every day. To me, purging three times a week just 'wasn’t that bad.' Anytime you are treating food and your enjoyment of food as a punishment or you are hiding your behaviour with food from your friends or partner, something isn’t right. It has taken months of therapy (so far) to alter my habits and adjust my relationship with food. The first step was admitting to the problem."
"I really wish people knew more about the physical ramifications of eating disorders in the long term – I know that we talk a lot about the emotional side, but a LOT of damage is done over time by over-restrictive dieting (or other forms of eating disorders as well). One of the biggest effects for me was the serious issues I had digesting even semi-solid food after YEARS of having mostly liquid and veggie-only diets. I was in so much pain and some people really struggle to come back from it. It alters your body."
"TV shows can be triggering. There have been TV shows that have lines like, 'I was 150lbs. So yes, I was fat.' Or 'She was 170lbs? So she was a large woman.' And it’s not played ironically. It’s like these TV show are saying that if you’re these weights you’re noticeably fat. As someone that struggles with an eating disorder but is not thin, this is an incredibly dangerous practice for TV shows. Especially because it’s done for the sake of comedy."
"What people don't understand is that's it's phenomenology hard to even make a simple tiny positive change. You feel proud when you've managed a tiny step in a positive direction. It hurts when your family and friends say, 'Is that all you've managed to change in the years you've been receiving treatment?'"
"It can become all consuming. You can't think about anything else and sometimes, you don't want to. I didn't understand this until I developed an eating disorder and I didn't even think twice about choosing it over my friends, my family, everything else in my life. It can take over before you know it."
"The shame and regret I feel after a binge episode is nothing like any other feeling. These feelings lead to self-hate and thoughts that you're not good enough. But especially, you feel that you don't deserve all the food you ate and do other things to make up for it. For some people, it could be purging. For others, it could be sadness. For others, it could be negative self-talk. For others, it could be self-harm."
"After trying to develop a healthy relationship with working out, I started back going to the gym, but I purposely started slowly. After about a month, some lady came to me in the locker room, told me that she had been watching my 'progress' and proceeded to tell me how I should do XYZ to lose weight faster. Then she walked away like she just gave me the answers I was looking for when actually it triggered me. All because she felt like I wasn’t losing weight fast enough FOR HER."
"I wish people understood that just because my weight has been restored, it doesn't mean I'm recovered or that it gives them a free pass to start talking about the latest fad diets again, or ask me personal questions that I might find triggering."
"It does not matter that people aren't talking about me when they speak on the looks of others – it still affects me."
"If I could sum up my experience with my eating disorder thus far I’d use one word, scared. I’m scared to eat. I’m scared of what I’ve done to myself and the toll my health has taken. I’m scared to get better but I’m also scared to stay this way. Everything feels uncertain."
"I wish people knew that I’ve had an eating disorder for over three years now and I’ve gained back all the weight I lost and more in recovery by myself. I wish people knew that every day I have to get myself to eat something for every meal or snack or even just drinks. I wish people knew that their body positivity affirming friend struggles to love their own body."
Some responses have been edited for length and/or clarity.