5 Things I Wish People Knew About the Complexity of Eating Disorder Recovery

There is an unfortunate disconnect between the outsider’s perspective and the reality of what my eating disorder is. There are so many things I wish people knew. I truly do wish my disorder was as streamlined, straightforward and simple as some people think it is. I wish recovery was the straightforward trajectory that even I once thought it would be, but the reality is that these things are beyond complex. My hope is that I can make some things clearer. This article is to inform and educate people who may not understand the unique struggles that come with an eating disorder. These are five things I wish people knew:

1. Everyone is different.

Every person’s disorder is unique, and the idea that people with eating disorders can be summed up in a sort of generalized universal experience is misleading. In my recovery, it is actually harmful for me to be treated using a generalized model. It is so important to create a space for open dialogue and communication because that is the only way we can even begin to build a bridge toward understanding. 

2. My weight does not define me.

It’s pretty common for people to become hooked on the correlation between a person’s weight and their eating disorder. While for many people weight loss is an effect of their disorder, this isn’t always the case. I could be maintaining a healthy weight but still be deep in the throes of my disorder. The idea that my weight defines my recovery status makes it impossible for the people closest to me to gauge where I am actually at. Instead of telling me I look healthy, I would want them to ask me how I’m doing. It makes a world of a difference.

3. My disorder is not taboo.

Eating disorders are incredibly stigmatized. Conversations surrounding what I go through can be brutally uncomfortable, and the only way around this is to become comfortable with being uncomfortable. It is so important that I have people I can confide in and speak to in my recovery. I find I’m often hesitant to discuss my struggles because of the fear of judgment surrounding my behaviors. The avoidance often leads to shame, and for me, this shame often cumulates into me being more susceptible to acting on a behavior.

4. Treatment is not a cure.

The work of recovering from an eating disorder is ongoing. Eating disorders are considered a chronic condition, meaning they’re long-lasting, and the work of managing them is ongoing. There is no cure for my disorder. I can go to every treatment program on the planet but I am never going to come back “cured.” When I come out of intensive treatment, people seem to expect me to be perfect, but that’s never going to be the reality. Every day is a struggle and it gets easier over time, but the eating disorder voice is always there, even when it isn’t so loud. 

5. Validation means the world.

I think people are afraid to validate me sometimes in the fear of sounding condescending, but I want people to know validation means the world. My eating disorder clouds my judgment and likes to make progress feel like something negative. Someone whom I care about simply saying they’re proud of me, or that I’ve done well, helps me stay grounded in my recovery and quiet the voices in my head. Granted, sometimes I react to validation with anger and frustration at first, but just the idea that someone knows what I’m going through is difficult still makes things just a little bit better, and that means the world.

While this list is obviously not exhaustive, I do hope it is something that resonates. The biggest thing I hope someone without an eating disorder can take away from this piece is that there are things you can do to help; you just truly need to be open to understanding. You have to be open to being uncomfortable, and open to some incredibly difficult conversations with people you love and care about, but I promise it’s worth it.