I Had Autonomy. And It Was Killing Me.

Autonomy is a central piece to supporting somebody through an eating disorder. Patients need to choose whether they will eat their meals, be honest with their support, and resist urges to engage in disordered behaviors, or not. Ultimately, they need to choose whether they want to recover. This is what we tell ourselves in the name of patient-centered care. I do agree, but I need to ask: what happens when the person we are giving full autonomy to is making choices that are tainted by an eating disorder that wants them dead?

When I was deep in my eating disorder, I was making choices too. I chose to purge until I saw blood in the garbage bag, hidden in my bedroom at residential treatment. I chose to secretly reduce portion sizes. I chose to leave the residence in the middle of the night to hike off the calories from the day. I had autonomy. And it was killing me.

Don’t get me wrong. My argument is not that patients need to lose their autonomy. It’s that we have mistaken the eating disorder’s control for our own. And in doing that, I believe that autonomy can become abandonment at the hands of eating disorder professionals.

You don't have autonomy to begin with.

For starters, if you have an eating disorder, your autonomy can become incredibly compromised. Your disorder can start making decisions for you. Every choice you make throughout your day, big or small, can be tainted by the eating disorder’s motives.

Mainstream treatment philosophies preach that we have the power within ourselves to choose recovery actions and disobey the disorder. And that is absolutely true. People have recovered by making those choices, on their own account.

But for the sake of those of us who could not recover within these philosophies, I need to ask: are we sure that is the only way?

If you've read my previous articles, you know I've tried it all. The outpatient appointments. The residential treatment stays. I've read the books, done the journal prompts, and tirelessly filled out recovery worksheets.

From the outside, you would see a girl doing everything in her power to get better.

But what was really happening was a girl doing everything in the eating disorder’s power to get better.

Now that makes zero sense.

We can’t call those “recovery” choices fully autonomous when the very illness I was trying to recover from was still dictating them.

So, what if we use autonomy differently?

The classic conversation about autonomy gives us two options.

Option A: The ED controls you.

Option B: Use your choices to try and control the ED.

These options are incredibly simple possibilities for solving a wildly complex disorder. One leaves the ED completely in control. The other asks the person with an eating disorder to use their autonomy to fight it.

What if there is a third option?

Option C: Use your autonomy to give up control.

This is not to say that you are incapable of making your own decisions. I’m not saying that somebody else should have control over you.

I’m saying that you can recognize when the ED has become too powerful a force in your decision making, and you can autonomously choose to put yourself in a position where it cannot make the decisions anymore.

That is eventually what I did.

I found what worked

By the end of my three year stint of being in and out of residential treatment and outpatient care, I had given up. My very last stay at that facility left me in the exact same place I had entered it: tired, hopeless, and checked out. I was due to leave treatment in two days because of the cost.

That evening, my dad called to tell me about a treatment opportunity I hadn't heard of before. I would be 1:1 with an eating disorder consultant twenty-four hours a day, seven days a week, for eight weeks.

Dad said, “Kate, I see that you're at the end of your rope. I think you need to try this.”

I was terrified, to say the very least. But I was also so spent and weary by that point that I agreed without hesitation. I had nothing to lose except the disorder.

Without this, I was going home to die.

Being with an eating disorder consultant day and night for that amount of time left virtually no room for my eating disorder to turn its thoughts into behaviors.

No body checking. No restricting my intake. No purging. No disordered exercise. No tricks.

And choosing to do this didn't mean that I lost my autonomy.

It meant that I used it.

I chose to put myself in an environment where my eating disorder didn't get to make the decisions anymore. I chose to let someone else hold the control that my eating disorder had been holding over my life.

I didn't surrender my autonomy. I used my autonomy to surrender the disorder's control.

But isn’t this giving up my autonomy?

The simple answer? Yes. I chose to.

Autonomy does not necessarily mean personally executing every decision we make. It can also mean deciding who and what we trust with those decisions.

I could have packed my bags and left treatment at any moment. Treatment was not happening to me. I chose to be there. I was still the one relinquishing control, only this time, I put it in the hands of a professional who knew the eating disorder like the back of her hand.

Maybe we’ve got it backwards

The answer is not to take autonomy away from people with eating disorders. The answer is to stop assuming that the way treatment has traditionally looked is the best option for everyone.

Professionals need to be able to recommend higher levels of care when a patient is not progressing. And as patients, we need to be able to advocate for ourselves and have treatments like the one I entered available and known to us.

For some, autonomy might look like choosing to fight the disorder day in and day out. If you or someone you know was able to recover in that way, you have my utmost respect. That is hard work.

For others, autonomy looks like acknowledging that they cannot do it alone, and choosing to put themselves somewhere where the disorder can’t run the show.

Both are choices. Both are acts of autonomy.

My story does not prove that everyone needs 24/7 care like I did. It just proves that we need options available to us that allow us to stop negotiating with a disorder that wants us dead.

I didn’t lose control. I chose where to put it. And you can too.