Girls and guys with eating disorders are complex people with unique reasons for showing up to the fight with this issue- so can we dropkick the shortsighted "diagnosis" that they only want control?
So many times I have thought that I am done writing about eating disorders. I said what I had to say. I've helped who I am going to help. I've indulged my need to lay bare the secrets of my starvation. While I have written about a few of my other experiences and opinions, the call to address food politics seems to arise again and again. It's likely I may never move on from writing about this topic, because once you go through the challenge and come out on the other side, it's very hard not to become an advocate.
Perhaps nothing absolutely floors me more than seeing how often those with anorexia are flatly labeled as "wanting control."
It's a disease. It's all about control.
You didn't like your circumstances, you couldn't control them, so you control what you eat.
You felt powerless, so you decided to exert control over your body.
It's enraging because it's so reductive.
We know the majority of sufferers are women. Appropriating a condition neatly packaged as a "control problem gone awry" has a deafening patriarchal vibration to it.
I remember being 15 and sitting in the doctor's office staring down a rotund white man in his mid-fifties.
"You don't like how you look, so you're starving yourself" he said in a matter-of-fact tone.
"No. I'm fine with how I look" I replied, in an equally matter-of-fact tone.
"You must feel like you want to look like women you've seen in magazines, on TV." His modern medical training urged him to push the looks angle.
"No. I don't."
"Well, this is a way for you to have control." Perhaps he thought jumping right to the DSM would cut through my irritating opacity.
I rolled my eyes. I had always known my reasoning from day 1. And for me, I knew it was not something I would call a disease. I did it on purpose and eventually, I stopped when I wanted to.
He was not able to officially diagnose me with anorexia because my cause was not in the book. He offered me some antidepressants, which I declined, and we left.
What we eat and don't eat has an enormous influence on our health and behavior. There is no doubt that biological syndromes and conditions arise as a result of extreme nutritional behaviors. In that light, there indeed are elements of disease, but I challenge the clinical notion that this condition, at it's root, is something uncontrollable that befalls sufferers due solely to a biological catalyst. I believe that it is a frightful reaction a person can have when something happens to them or around them that shakes the ground beneath their feet.
For me, it all kicked off when my mother, father and step-father were busy arguing over custody, child support, visitation... that old story. Ironically, I felt (and was) left out of the conversation. It's a strange position to be in to have two men arguing over being your father- especially when neither seems to fit the bill or even like spending time with you. Stepping back from the minutia, I concluded that everyone needed more time. My childhood was whittling away at the sharp scrapes and jabs of the arguments and court visits. I needed to extend my childhood so that we all could have a do-over to resolve our issues and refocus on being a family that could do normal family things. If I stopped eating, I would stop growing. I would stay small enough to hold, to carry, to be taken care of. I could freeze time. I could have the relationships I desperately craved.
I first wrote about my eating disorder in a creative nonfiction class my sophomore year in college. According to my beloved professor who taught the class and remains a close friend today, my writing was "nothing special" before this piece. My essay was published and garnered moderate local media attention. I went on a couple of reading tours. I presented at an out of state writer's conference. A lot of legs for a class assignment. Along the way, I had lots of conversations with other girls, parents, clinicians, doctors who had themselves suffered or who had wanted to support someone who did. The most frequent "thanks" I got was for showing how different the reasoning can be for each person who becomes ensnared in this issue. So often I was told, "My [daughter's/sister's/father's/patient's] behavior makes so much sense now. I had just assumed it was a control thing or a body image issue."
Interestingly, I have been in a couple of heated debates on this topic. The two most notable arguments were both with older women- one, a radio host and another, a social worker.
The first debate came while I was at a reading at a renowned inn in the Finger Lakes. It was a small gathering of writers and thinkers seated in winged-back chairs around a fire listening to each other's work over cappuccino and proud wines.
I like meetings like these. The conversations are in fact interesting to me, but I also love to laugh at the ego of the room. What is it about knit sweaters and fine Italian coffee grounds that make our thoughts so serious and superior?
The woman who would be my adversary for the evening had one of those calm, almost masculine NPR voices. A perfectly modulated pitch that delivered important news on social justice, global affairs and respected opinions. Truthfully, I don't remember my exact words that made the thundercrack surge out of her throat. Her cashmere vocal cords would not fray like that again until years later when she was forced to say the words "President Trump" to her educated listeners.
I do vividly remember her square-shouldered haircut tossing and shaking from the bobs her head made as she angrily conducted her argument.
"How can you say that? You are wrong! It is a disease. You are wrong!"
I think the comedic distance I have always maintained in these literary circles really allowed me to just observe and listen without being affected. I stood my ground and countered her points as she hurled them at me, and did get a little loud. But when it was over, it was over. I received a few wide-eyed looks and secretive whispers afterwards that let me know most of the others saw her actions as shocking and out of line.
I wish I remembered more of what she said. Not because I'm a glutton for argument, but I am curious to know why my personal essay enraged her to such an uncharacteristic extent. I know that she herself had not suffered an eating disorder, so what about my words offended her so much?
The next encounter felt more sinister.
The goblins that hide under my family's bridge grabbed at our heels once again. We were all gasping in a mushroom cloud of emotion, pain and fear that seeped into our lungs after a major rift ripped through our home. Someone I care deeply about and had always been close to was suddenly extremely reactive and unpredictably angry with me in the aftermath of all that had happened. I tried to be supportive, but a self-protective instinct kicked in and prevented me from going so far as using my body to maintain that connection. I knew this time I needed a different strategy. I tried to be empathetic, but I also created space and spoke up when actions and behavior began to cost me peace. Sadly, it was not working and the relationship was growing more and more strained by the day.
Without any family left to consult, I turned to the family therapist. I knew this was an odd move, but I was so desperate to do what I could to repair the relationship that I at least had to try. I called and explained the strife. I knew this woman had been seeing my family member and I wasn't even sure what she could help with, ethically. She said that we could have a joint session, but first I would need to meet with her four times for a one-on-one.
I went to the first visit feeling hopeful that I had found a neutral party that would aid in resolution. That hope evaporated within minutes. The problem was that I had been a character in so many stories over the years that her opinions of me were solidly formed. Very quickly I felt misunderstood, but I tried not to get defensive, keeping my end goal clear in my mind. Unfortunately that came to a screeching halt when we began to talk about the history of communication with my family member.
"...Well you know, I stopped eating for a while, but that is all totally resolved in my head. It's crystal clear why I did it and why I stopped, so really it's not an issue today." Despite the rocky start, I was confident a clinician would understand the context I had set out.
"Well, you wanted control."
I felt my hair stand up.
"No I didn't."
"Mm. You wanted control."
Her tone was corrective, chastising and reductive. She had the right answer. I was wrong. My experience was not mine, it was textbook. I was fuming.
I attempted to explain my reasoning. The reasoning that I know drove me to take extreme measures to restore the connection with my parents. The reasoning that, once clarified, made me stop the behavior immediately. The reasoning that I have written about, spoken about and had defended before.
I won't elaborate further on these visits, but the other three proved her approach was not a fluke. I still feel my heart racing and my body dripping sweat when I think about this interaction, not only because I think she played a role in worsening the relationship I hoped to rebuild, but because I know this is a mindset many clinicians and physicians have towards their patients. Parents, friends and loved ones of those with eating disorders want to help, but when this is what they see in their medical leaders- I don't think they can.
How do you approach someone who you see as a control freak?
How do you approach someone who you see as desperately wanting to connect?
Who are you more willing to listen to, understand and help?
We have two local institutions that attempt to support those with anorexia, bulimia and similar issues. I had hoped to volunteer at one, and instead was patronized and hounded for a donation. I visited the other after a colleague of mine recommended me to the director to offer journaling workshops to the girls and their parents. He made a point to include the bathrooms in the tour of the facility and proudly told me that their are no locks on the doors and the handles are set so that the girls can't flush before having a counselor check the toilet.
"You know, it's what they need."
I left knowing I would never be going back.
If I could offer one piece of advice to anyone trying to help- don't focus on the food. Ignore the weird habits, the rules, the insane food combinations. This is not a food issue at its core. Show up for these people. Ask them what's been going on in their lives. Get to know what's important to them and then step back and look- are they getting that? What stands in their way? Don't look for what they are trying to control- look for what they are trying to connect to. What they are they reaching for that is beyond their grasp? Can you put your opinions aside and help them get there?
What we as onlookers and supporters don't want to admit, is that it works. The starvation does get our attention. It does make us listen. When we are being honest, we might see that we did fail them, ignore them, misunderstand. Keep in mind that they aren't trying to control us, they are trying to course correct the relationship and or our perception of them. They are trying to say, "Hey, refocus, and see this quality, see this part of me, listen to me when I say I have this need."
And maybe this seems stereotypically empathetic to view it as a 'cry for help'.
But so often the simplest answers have our highest suspicions.
When someone says, "I'm afraid no one listens to me."
Stop and listen to them.
When someone says, "I feel like no one notices me."
Help them to feel seen.
When someone says, "I'm so alone that I'm getting depressed."
Sit with them.
If you are the one who is struggling, know that you're not crazy. It's very likely that you do in fact love yourself (despite what everyone says). You are trying to help yourself get what you need. No matter what it is you are trying to bring into your life- success, relationships, a sense of belonging, protection, a second chance- you absolutely can have it. Trust that you can have it by trying something different. You can nourish yourself and feel strong. Trust that people will show up for you. They will show up for you now, and they will show up for you if you change. Taking care of yourself can feel so scary, but eventually, it is liberating.
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