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.