"You Just Have to Want it More..."

"You just have to want it more, Rachel."

If I had a penny for every time someone has said the above statement to me Bill Gates would be in some serious competition.

One of the misunderstandings around eating disorders that frustrates me the most is the idea that someone who is struggling just needs to "want to get better" and that if they "wanted it enough" they could stop using behaviors, the urges would dissipate, and they'd be able to move on with life. And while I understand how, to someone who has not personally experienced an eating disorder, it would be easy to see it that way (and hard to see it any differently), I know that for myself and for some of my closest friends who have also struggled, it definitely hasn't worked that way.

While there is definitely an element of choice in recovery (and in the eating disorder) at a certain point, when someone is very sick, they lose the ability to make those choices. The eating disorder literally becomes paralyzing, and as much as you might want to "get better", you can't bring yourself to do the things that you know intellectually you need to do, even if you want to do them.

At the end of this last year, when things for me were at the worst that they ever have been, my mom would ask me almost daily to "Please try. Please don't give up. Please eat something.", and I remember thinking like, I wish I could. I didn't know how to explain that to her, because I really couldn't understand it myself either. How could I hate my eating disorder so much, and want recovery so badly, and still be so stuck? How could I be terrified of dying and simultaneously not able to break my 300 calorie/day limit? It didn't make sense. When I would try to tell her that I couldn't, that I was just going to die and to please give up on me, she would tell me that it didn't have to be like that - that this wasn't cancer, I had a choice! I could choose to fight! And like, I understand how technically, yes. I mean, I was starving to death in a house well-stocked with food. But I remember just thinking that at that point it might has well have been cancer, because I really just couldn't eat. I wanted to, but I just couldn't.

I think one of the hardest things for me, and for most people - to understand/accept is that really and truly nothing about an eating disorder makes sense, or is logical. People forget that these aren't choices or lifestyles, that an eating disorder is a crippling mental illness. I don't think anyone with schizophrenia really wants to hear or see things, but wanting not to isn't enough to make the voices or images go away. You can't want a mental illness away. You can want recovery and still be to stuck or sick to make the choices needed to achieve recovery.

I think a lot of it can be chalked up to the biological effect of starvation on the brain. I know for me personally, the lower my weight got and the longer I went without really eating, the more paralyzing the eating disorder felt. I wanted things to be different, yes - but I was still too afraid to leave my bedroom because I thought I'd inhale calories from my family's food. I felt like my brain was broken, and in some ways it really was. I couldn't think. I was afraid of everything. And the fear felt too real and too paralyzing for me to even consider trying to move past it. And also I know that with each year that I continued to struggle, the eating disorder continued to become stronger. Things that wouldn't have been a big deal for me at the onset of my illness felt impossible to me a year later, and then those things felt impossible the next year etc. etc. As the eating disorder grew my world shrank, and my ability to choose recovery shrank, until I really just felt very powerless and out of control.

When I did make it to treatment, my doctor had to put me on a certification for involuntary treatment and involuntary tube feedings, because even though I wanted to be there and wanted to get better, and even though I was trying, I had continued to lose weight during my first week and was still restricting several times a day. I remember sitting in her office crying hysterically and begging her not to do it, promising that I would eat everything from there on out/to please just give me one more chance etc. and she just shook her head and said, "Rachel, I really believe that you want to be able to do this. I do. But right now you're just too sick, and I need to step in and help you." And looking back, I literally owe that woman my life. Because as much as I wanted to do it, I really just couldn't at that point. As I began eating and restoring weight I did become more and more able to make those decisions for myself (and eventually she dropped the cert and I became a voluntary patient), and at this point in my recovery I do feel that I have to make a conscious choice at each meal and snack. What do I really want to do right now? Do I want to do what is comfortable, or what will move me towards what I value? But that ability has come in little bits over a lot of time, and a lot of work (and a lot of weight) and through people initially taking the "choice" away from me.

There have been many times in previous treatments where I had been written off as "non-compliant" or "difficult"/"chronic"/"doesn't want recovery", and I was told that if I didn't want help I wasn't going to get better/I was just wasting everyone's time. And looking back it just makes me so sad, because all I needed at the time was for someone to recognize that I was just really scared and really sick, that I wasn't "playing games" or "being manipulative", and no one was able to do that. I understand that it would be difficult for someone who hasn't struggled, because as I said before there is truly nothing about an eating disorder that makes any sort of logical sense, but the truth of the matter is that the girl who is draining her tube feeds at night and hiding sandwiches in her sweatshirt pockets may really want to get better. She could probably list you off numerous things she wants more than the eating disorder - school, friends, good relationships within her family etc. - and she probably really hates the eating disorder and how it keeps her from those things - but she's sick, and so she'll still do those things anyways.

I've followed a handful of treatment centers and eating disorder organizations on both facebook and twitter, and I feel like when they aren't posting about being brave enough to wear a bikini or photoshop, they're posting "motivating" quotes that, I suppose, are meant to empower the reader. But when someone is really sick, it just doesn't work that way. You can't "motivate" someone out of it. Asking someone who is starving to death if they'll be proud of the choices they made today a year from now isn't really going to help. (I remember seeing a quote like that in December "Make a choice today that your future self will thank you for!" and just thinking that I probably only had a week or so left, and I still couldn't bring myself to eat, and that there would be no future self.) I think that what so many people forget is that eating disorders aren't something that the person suffering chooses - that they are an illness - and that in the same way no one chooses to get sick, you can't just "choose" to get better, and you can't simply want it enough to make it happen. It's hard, I think, for people to recognize that, I think largely due to the fact that the organizations that are raising "awareness" are spreading the misconception that eating disorders are essentially just diets taken too far (and therefore a choice), but also because eating disorders manifest differently from other mental illnesses, therefore people forget that they are mental illnesses. I remember being on a general psych unit when I was younger, and there was a little boy there who legitimately believed that he was a glass of orange juice, and he was afraid that if anyone touched him he would "spill", and he wouldn't take showers because he thought he would "overflow". There was another woman who referred to herself as "Claudette and company" and she thought that there were 52 people living inside of her. She would constantly talk to people who weren't there, and she would eat paper and clothes and other things that were definitely not meant to be eaten. And like, when I think of the term "mentally ill" those are the people I think of. And I think that's kind of what most people jump to as well. On the other hand, most all of the girls I've known who have struggled eating disorders have been incredibly thoughtful, intelligent, talented, high-achieving people. And I think it's just harder for people to understand and recognize that the person struggling, who may have so much insight in other areas of life and "so much potential!" (I have grown to really, really despise those three words), is sick, and not just deliberately choosing to do everything that they probably feel very trapped in. It's a lot easier for someone to look at someone like "Claudette and company" and realize that she was mentally ill, that obviously no one chooses to live their life that way.

One more thing that I want to touch on before I end this (sorry, I know this post is getting a bit lengthy, I just feel that there's a lot to say on this topic) is that I think a lot of people don't understand that you can want recovery and still be terrified of it. And that might be something that, if you haven't struggled personally, could feel really difficult to understand. (Honestly, it is still difficult for me to understand) There is nothing wrong with you if you still want certain aspects of the eating disorder, or if you don't feel like you're able to "make yourself want recovery more". I have really, really struggled with that, but in reality that's just not how this disease works. There is no such thing as "wanting it enough" to make it happen.

I know it is no small feat, but try to give yourself some compassion for wherever you are in your journey, and try to extend that compassion to others too. I know it can be really hard to see someone sick and struggling and to not see it as a choice that they're making/to not want to shake them and somehow "make them want recovery enough", but try to remember that the person struggling is undoubtedly already in a lot of pain, and most likely feels a lot of shame around their struggle. They need patience, understanding, and again, compassion - not judgment.