What do you wish people knew about eating disorders?

We asked a group of people in the eating disorder recovery community about what is most helpful and hurtful from their support group. The following are participants answers to the question:

“What do you wish people knew about eating disorders?”

  • Recovery is a difficult and long process (49%)
  • It’s NOT about vanity, appearance, looks and attention. Eating disorders are emotional (36%)
  • EDs can feel shameful and painful. They can destroy your life and are not pleasant to have (33%)
  • It’s not a joke, and it’s not cool. It’s a serious and life-threatening illness (31%)
  • Eating disorders are not just a physical/medical issue- they’re very mental and emotional (27%)
  • EDs are not a choice (23%)
  • Saying “just eat”, or focusing on food issues is NOT helpful, and doesn’t solve everything (20%)
  • Eating disorders come in ALL shapes, ages, and sizes, and are more common than you think (16%)
  • Eating disorders are very complicated (16%)
  • You CAN’T tell how someone is doing, or if they have an ED, based on their weight (15%)
  • It’s not about the food (15%)
  • EDs are caused and perpetuated by a lack of self-perception, self-esteem, or sense of identity (15%)
  • They’re about control (10%)
  • Treating the person “like a sick person” is unhelpful (8%)
  • ALL eating disorders can be severe, regardless of diagnosis. EDNOS should be taken as seriously as the other EDs (8%)
  • Treatment needs to be more available, and intervention should happen earlier. Treatment can be hard to get (8%)
  • Eating disorders are similar to addictions (7%)
  • Seeking help is difficult, often involving shame and fear (7%)
  • It IS possible to recover (5%)
  • Support is or was helpful (5%)
  • Recovery was life-changing in a positive way (5%)
  • Doctors and others need much better education on how to talk to ED patients (4%)
  • Eating disorders come from Satan (1%)

Selected actual survey responses

“That when you start to recover, although you look better on the outside, you can still be feeling terrible on the inside. ED’s make you feel totally hopeless and like everything about life is a struggle. ED’s start off helping and being useful as a protection against painful things in life but sometime along the way it turns into a monster which controls your life.”

“It is NOT about vanity It is NOT about attention The inner shame is unbearable”

“I wish people understood you can’t just snap out of it. I wish people would understand they are complicated disorders and it is a huge struggle for people dealing with something like this. I wish doctors were more educated on eating disorders and how to approach their patients.”

“That food is just a component. There is so much more behind the behaviors that even the person with the ED may not be aware of. EDs come in all shapes and sizes, and EDNOS is just as serious as any ED.”

“You can have one at ANY weight.”

“eating disorders aren’t a choice or a phase, and recovery is not indicated by physical appearance or when weight is restored. bulimia is not less severe than anorexia. recovery is a process not a one time decision.”

“I wish people knew how incredibly complex and painful eating disorders are. I wish they knew that anorexia is more than just seeing thin celebrities and starving to be thin, that there are a lot more psychological and emotional things that go on. I also wish they knew that recovering from an eating disorder can take a lot of time and work and involves more than just stopping disordered behaviors. I wish people realized how incredibly common eating disorders are, and that someone can have a very serious problem even if they aren’t emaciated and “look anorexic.”

“It is so hard having an eating disorder and you can’t just wish it away. It becomes a part of you and eventually you can’t find the real you until you destroy the disorder. I just wish people knew how hard it is. And, I wish parents would take care if their own issues when the decide to have kids. Most just coast along, not realizing they are passing along their own undealt with issues to their kids and continuing the cycle. I’d like to stop this cycle.”

“Eating disorders are illnesses, not a diet gone wrong. Most people with eating disorders don’t need a friend’s nutritional advice. Eating disorders come in all shapes and sizes. You don’t need to look sick to be sick. Size does not determine the severity of an eating disorder.”

“People need to be informed about EDNOS. Most don’t even know this is a category.”

“I wish they knew how much it is like being an alcoholic, a drug addict, or a cutter. And as difficult as it is to overcome those problems (and I really don’t mean to take anything away from their hard work and triumphs), I get jealous of those addictions sometimes because they are supposed to quit completely; food on the other hand, is necessary for living a healthy lifestyle and it is always around. I also wish people knew that eating disorders often have nothing to do with trying to be thinner or look better.”

“Eating disorders won\’t make sense to someone who has not had an eating disorder. Not everyone who has an eating disorder is extremely thin. Small victories over an eating disorder are a big deal. Progress is made one small step at a time.”

“Although I restrict what I eat, I don’t like it either! I wish I could eat normally. I’m not doing this to hurt you.”

“People with eating disorders come in all shapes and sizes. I waited nearly a decade before seeking help because I thought that I wasn’t “sick enough” to have a[n] actual problem. I wish people understood how difficult it is to get in and stay in recovery. People in my life expected that I would get better quickly simply because I started treatment, but the reality is that was just the beginning.”

See more results from our survey: