NEDA Week: Writing the Experience

One of the things that I have often noticed about those in the eating disorder community is that many of the people in it often have difficulties speaking or telling their experiences, and that often they are far more comfortable with writing as their chosen form of expression (art is also common). As I think about eating disorder awareness, I’m really struck by the ways in which we write down what it is to have an eating disorder, particularly those pieces we conveniently leave out.

In particular, writing is a very different medium from speaking in that we have a lot of time to edit and only put down carefully crafted words. Oftentimes stories change a great deal when they get written down: certain parts are deemed unimportant or not fit for mass consumption, some parts are changed as we retell and rewrite, and we feel the need to create a coherent narrative. Who wants to read a story that ends “I’m still living my life and things are much the same. I learned a few things but I haven’t learned all my lessons yet and I’m still working the way I was through the whole story”?

Even as many of us find it easier to write, coming clean about the experiences of an eating disorder is still incredibly difficult. While the stigma and stereotypes are slowly being eroded, very few people actually want to hear the nitty gritty details of being on the inside of an eating disorder. No one wants to know about the puke you get on all your clothes when you purge. No one wants to know about the bizarre digestive problems and the sheer boredom of anorexia. No one really wants to know all the horrible things you say to yourself when you’re on your own. It’s incredibly difficult to pin down how honest is honest enough but not oversharing, and perhaps even more it’s hard to know how to frame your experience.

Eating disorders are your life. For as long as you have one, it tends to define  you, to take up almost every minute of your day, to affect nearly every decision. Imagine trying to summarize your life for the last year, being honest and giving someone the best insight into what the internal experience is like. This is the experience of trying to write what it is to have an eating disorder. To write it is in its very essence to try to pin down an entire life, to cut some things out, to forget, to choose a focus that may not wholly encapsulate who you are and who you were.

It is impossible to ever be wholly honest when you choose to write a piece about an eating disorder. As hard as it is to describe each individual experience that makes up the moments of an eating disorder, it is literally impossible to ever explain all of them. So what does it mean then to try to write an eating disorder? How do we choose which pieces to leave out?

In part, you define what it is to have an eating disorder by the pieces you choose to write. But you also choose how you want the world to view eating disorders (because as a minority, each one of us of course has to speak for all of us). You decide how to humanize eating disorders. Writing the experience is not telling others what your life personally has been: it is giving others a template for how to understand others with eating disorders. This may seem like a lot of pressure, but unfortunately many people out there will only ever hear one story of eating disorders and it may be yours. Most of us who write our stories know on some level that we aren’t just telling a story, we’re creating a narrative for People With Eating Disorders. This is part of why it’s so hard.

I believe that we’ve reached a point in eating disorder awareness where it’s become really important for us to start telling the ugly pieces. We took the time to write the narratives that show we can be positive and hopeful, the narratives that inspire, the narratives that people can relate to. But now we have to write our difference. No one will be able to help us until we’re willing to show them how we are not like other people, how our minds function in terrible ways, how we can spend hours debating a single bite, the mundane and disgusting and stupid parts of having an eating disorder.

Stories like this: last week my boyfriend was horrifically sick. It was something flu-like. He couldn’t keep anything down, he was miserable, he couldn’t leave the house because there was stuff coming out of both ends…and I was jealous because I knew he would be losing weight and I couldn’t.

I want our narratives to be whole and complex because we are whole and complex.

NAMI Week: Tropes and Strength

This morning on my way to work I was listening to NPR and I heard an interview with a woman who was in remission from breast cancer. She’d written about her experience, but unlike many other breast cancer stories, hers wasn’t bedecked in pink, she wasn’t painfully upbeat, and she didn’t have a story about how grateful she was for the experience. Instead, she spoke honestly about the fact that she wasn’t a breast cancer “warrior”, that it wasn’t about being strong all the time, that it truly sucked and she felt disgusted sometimes when she saw herself without eyebrows or hair, and that in the end her life went on in much the same way as it had before the diagnosis.

As she spoke, I felt some resonance with the experiences I’ve had of talking about eating disorders and the tendency to demand that those in treatment always remain upbeat, to turn the disorder into something you fight, and to gloss over the real and difficult elements of treatment and recovery that absolutely suck. No one honestly tells you how it feels to see yourself gaining weight, or how it feels to eat that first meal in your treatment program, or the circles you go in round and round in your own mind trying to decide what is healthy and what is good and what is right.

There are certain tropes in the eating disorder community about the right way to recover and the right way to seek treatment. The right way is with a positive attitude, with a desire to recover, with a strong inner motivation that turns you into a warrior against the eating disorder mind. The right way is following your meal plan and with mantras and with finding the joy in your life again so that you have the strength to battle on. The right way is by finding your inner beauty, by struggling through mechanical eating until you find love again, by having the very best family ever that you always rely on and always open up to. The right way is by learning the world is huge and beautiful and you are too, by realizing you would never judge others the way you do yourself, by finding your authentic self.

The right way to recover is to hold on to your eating disorder until you’re hospitalized repeatedly and nearly die, realize the importance of your life and then throw yourself into treatment, never looking back despite how hard it is. The right way is with breakdowns on the shoulders of those you love and moments of clarity.

These things are great for some people and I would never tell someone that they can’t hold on to these tropes or strategies if it works for them. Unfortunately there are many, many, MANY people for whom these things just aren’t their reality. Many people get dragged into treatment kicking and screaming, but that doesn’t mean that treatment will always be 100% useless for them. Many people don’t hit that moment of rock bottom and get a burst of clarity and momentum to move forward. Many people don’t find new joy or fun in life again, they simply have to remember how to manage in a contented way as they used to. Many people slog through years of treatment under different programs and therapists without a clear sense of where they’re going until they’ve finally found they have many of the pieces they need to do better.

It can be a wonderful thing to hold onto something positive. It can be inspiring to see that someone else has made it through and is in a better place than they used to be. Many of these tropes seem to have grown out of the idea that we can be strong and we can come out the other side better, the idea that we are not less than others or weaker than others or in need of pity. These are wonderful things to hold on to. But just like anyone else in the world, we also must be allowed to have difficulties and struggles. We must be allowed to have the complex experiences of being human.

Just as it is cruel to deny people of a certain group hope or happiness, it is just as cruel to deny them the experiences of being afraid or anxious or hurt. Part of what I would like to see in the awareness of eating disorders is the portrayal of real and complex people who have eating disorders: people who are sometimes hopeful and sometimes broken, people who work through each day like anyone else but who happen to have a few more things on their mind, people whose lives and trajectories aren’t a straight line down and then a straight line up. 

True awareness is not statistics or cut and dry stories that end just so. True awareness is a conception of how eating disorders fit into the real and messy lives of real and imperfect people. It is listening to someone speaking openly of what it’s like in their life. It’s not leaving out the parts that are hard or scary, or painting the illness to recovery journey as one of black to white. I would love to see more of this awareness.

NAMI Week: What Can I Do?

Welcome to National Eating Disorder Awareness Week 2014! I’m going to try to spend this week blogging about issues surrounding eating disorders and eating disorder visibility as my own small part of eating disorder awareness.

To start out the week, I want to try to make eating disorders a little less scary. Oftentimes when we try to shine a light on mental health issues, the average joe who does not have whatever condition we’re talking about gets overwhelmed. What am I supposed to do? If I see someone who seems like they might be dealing with this how do I help?

These are important questions because we are just scratching the surface of psychology and neuroscience, and for the most part we don’t have good understandings of the etiology of mental illnesses. It’s hard to tell someone what to do to help fight a particular illness when we don’t know what causes it. It isn’t like diabetes where we can promote healthier eating and more exercise. Eating disorders are complex beasts that can react negatively to almost anything you throw at them. So during this week of heightened awareness, what sorts of things can you commit to to improve relationships with bodies and fight against eating disorders?

To me, the best place to start is at home. We learn from each other and there are very few models of healthy body image and healthy eating. In a world filled with shitty messages about how you should treat your body and how you should relate to your body, the hard work of feeling at home in your skin is fairly radical.

Fight against Cartesian dualism and see if you can’t learn to see your body as an integral part of yourself. Practice less negative self-talk and judgments. Try engaging in activities that ask you to take up space, like dancing, and revel in taking up space. It may not seem like a lot, but your good mental health can be great for someone else. Some really concrete ways of doing this can be cutting out calorie talk. It’s one thing to say you want more protein and less sugar, but calories are actually really unhelpful at assessing the healthiness of a food and feed into diet culture.

Another thing to try to cut down on is “bad food” talk. Many people like to say things like “Oh I’m being so bad” when they eat something sugary or fatty. No, you’re not, you’re eating something tasty. There is no such thing as bad food and it is not a moral failing if you eat more fat or sugar than is maximally healthy. See if you can stop putting moral judgments on any food. It’s hard. You will see how ingrained size, food, and morality are. The more we can cut those ties the more we create a healthy environment.

But there’s a lot more to eating disorders than food and food discomfort. Obviously. So is there anything you can do to help create a positive environment that will help combat some of the underlying fears? YES! Something that I’ve noticed over and over with my friends and acquaintances who struggle with eating disorders is feelings of inadequacy, feelings that our emotions are bad and wrong, feelings that we will never be good enough or perfect enough.

A great thing to practice towards all people in your life is validation. Validation at its most basic is just letting someone know that what they’re feeling is real. It’s acknowledging their emotions and not passing judgment on those emotions. It can be as simple as saying “wow that sucks” when someone tells you they’re having a rough day. This can be done in conjunction with all sorts of other types of interactions like problem solving, but I’d suggest practicing validating all kinds of people for all kinds of things. You never know who needs it and it’s a good skill to get in the habit of doing. Your coworker says they’re swamped. Instead of one-upping or asking if you can help, start by simply saying “wow that sounds exhausting”. This may not seem like a lot but if you make a practice of it you can do a lot for other people by sending them the message that their feelings are valid, real, and acceptable.

Another good idea might be to educate yourself on some of the basics of mental illness. NAMI has some good resources. I would suggest in particular getting a basic understanding of depression since it’s one of the most common mental illnesses out there. A little bit of understanding can go a long way. Hand in hand with that it’s a good idea to keep your own mental house in order. If you’re struggling, be willing to see a therapist. Take some time to think about how you communicate and how you can improve your communication skills. Make sure you’re taking responsibility for your own emotions and learning about how to keep yourself stable and content. Tall orders yes, but the more we all work on these things the easier it is for people who have serious hurdles.

So say you’ve done all of this and made your best effort to keep yourself and your environment validating and fairly healthy. You’re paying attention to your friends and family, trying to be a helpful person, and you start to notice some of the signs of an eating disorder in a friend. They’ve suddenly become obsessed with food, they’ve started to isolate themselves, they avoid situations that involve food. They may have lost weight suddenly or just become secretive about their eating habits. You hear them making cruel remarks about their body. They start going to the gym ALL THE TIME, or eating huge amounts and then disappearing suddenly. You can tell their mood is down. What on earth do you do now that you’re faced with the real beast that is an eating disorder?

One of the most important things to remember in these kinds of situations is that you cannot fix your friend. It is not your responsibility nor is it possible. Hard to accept, but super important. It can be hard for someone who’s depressed or in the midst of an eating disorder to reach out for help. One good thing to do is offer yourself and your time. Ask them to hang out instead of waiting for an invitation (mustering up motivation and intention to do these things can be nearly impossible when depressed), make sure they know you’re available to talk to, offer to go for a walk with them or do something else you know appeals to them.

It’s important to remember that confronting someone about food is probably the least helpful thing you can do. The eating disorder will interpret this as a threat, double down, and make life hell for everyone. If you’re extremely close to the person you  might suggest that they see a therapist because their mood has been off or down and you’re worried about them, but food is a scary place for someone with an eating disorder. Provide them with options, make sure you’re eating enough and that you’re offering them opportunities to eat, and validate the hell out of them.

There is no one perfect answer to what you should do to support a friend or family member. These are some places to start, but there are also support groups available for friends and family members at some eating disorder clinics and that’s a great place to get yourself if you want some additional ideas and people to rely on. If you can spend some quality time with your loved one, try to listen to what’s really bothering them underneath the food. That may be the most helpful thing you can do.