ED Q&A: What Do You Wish People Understood?

We recently asked people in recovery from an eating disorder to share their thoughts about the illness. We hope these insights from those who have “been there” help you if you’re seeking answers and understanding. A big thanks to everyone who contributed to this post.

These are personal perspectives; everyone will have unique experiences on their own path to recovery and beyond. Some stories may mention eating disorder thoughts, behaviors, or symptom use. Please use your own discretion. And speak with your therapist when needed.

Today’s question: What do you wish people understood about ED?

Everyone with an eating disorder looks and acts differently.
-Allie

It’s not as simple as “just don’t do it.” Unlike alcohol or drugs, you can’t just separate yourself from the trigger. Food can’t just go away.
-Hannah

That it does occur in men and not just rarely, that even though I look fine my body is in turmoil.
-David

They are all-consuming and sneaky—even I may be unaware that I am slipping back into old patterns. The eating disorder is the ultimate deceiver—even though you believe it is irrational, it’s perfectly logical to me. Challenging your own thoughts and beliefs can be exhausting, so when relapses happen, know that I may be just as confused as you are.
-Alisha

Eating disorders are normally not about the food, there is so much more underneath. Also, you don’t have to be underweight to have a very serious eating disorder.
-Taylor

It’s not solely about body image. There is often an underlying cause. Also, weight restoration does not equate to full recovery.
-Carrie

Eating disorders are a psychological compulsion and disease—they are not a “choice” by whoever is suffering from one.
-Kristine

That there is never “one thing” that makes someone develop an eating disorder.
-Liza

The feelings are intense—like phobias.
-Christine

This is a disease that tells me I don’t have a problem most days, and it’s really uncomfortable to talk about.
-Jenna

People of any body type can have them.
-Amanda

That it stems from desperately trying to take care of yourself.
-Adriana

It doesn’t matter what you look like. And sick is sick! You’re never not sick enough for help
-Cheyanne

Recovery is a daily battle.
-Dani

They can’t be explained easily.
-Jodi

Life-threatening, no matter the type.
-Allyson

They are not a choice but a mental illness.
-Susie

I wish that people understood that eating disorders come in all shapes and sizes. You can’t tell just by looking at someone that they have an eating disorder. I wish that people knew they don’t have to look a certain way to be in treatment.
-Lauren

I wish people realized it’s not all black and white. Eating disorders are so complicated, sometimes it feels like I have 2 people inside of me: Rachel and my eating disorder.
-Rachel

It doesn’t define you or who you are!!
-Glenda

They aren’t just bulimia and anorexia.
-Lisa

That it’s a REAL mental health/medical diagnosis
-Rachelle

That they aren’t a choice. If I could have a normal relationship with food without anxiety, fear, feeling overwhelmed, I could in a heart beat. It’s not that easy, though; there’s not a switch in the brain to just turn it around. The feelings that those who live with an eating disorder are so, so real. It’s an extremely difficult and life-altering thing to live with.

That it’s okay to talk about them.
-Cherice

That you can be at a restored weight and still be struggling.
-Molly

I wish people understood that ED is not a choice. It is not a conscious decision nor is it something that is without guilt, depression, and knowing that you are sick. Most people with an ED KNOW they are not well, it doesn’t help with treatment.
-Jamie

That is not about vanity. You choose to engage in behaviors, but you don’t choose to have the mentality that makes you feel like you have to do those things. For me, it was a way to control my anxiety.

Eating disorders are not a choice and they also have comorbid diagnoses with them.
-Harriet

So much more than they currently might. That it is not a choice; that it is profoundly linked to identity development and a sense of control and autonomy; that it has far-reaching consequences for not just the individual suffering with the disorder, but relationships and work in all areas of their life. Eating disorders are dynamic systems and they are intricately linked to our cultural experiences. That it is deeply about self-trust and world-trust.
-Jacquelyn

People can act completely unlike themselves because of their eating disorders.
-Calli

It’s not something you can just “shut off.” It’s a combo of learned habits and the way your brain is wired.
-Nicole