A Disease of Self Hatred
On Wednesday, June 19, 2013, the American Medical Association (AMA) announced that its House of Delegates (against the recommendation of AMA’s own expert committee tasked with studying the issue) “voted to recognize obesity as a disease state with multiple aspects requiring a range of interventions to advance obesity treatment and prevention.” Several excellent responses to the AMA announcement – especially from those advocating for a Health At Every Size® approach to wellness – have issued putting forth most of the points I feel are important to raise. Rather than add to that very effective chorus and fuel the fire that is already burning wildly in my belly about this, I will share my story of three specific interactions, spanning the course of fifteen years, that have profoundly affected my health and, more importantly (and completely intertwined with my health), my sense of self.
[Having read this piece after writing it, it seems a little cynical compared to what I usually write. I’ve decided to leave it as it is, without much editing, because cynicism in this instance is a way to protect myself for the time being against some incredibly painful emotions around what I am about to write.]
In late 1993 or early 1994, at 15 and not too shy of the size I am now at 34, I was smack dab in the middle of the worst year of my life to date. In the middle of a whole lot of chaos, my neck started bothering me. And by bothering me, I mean there was a huge, painful, bone-like knot, protruding from what seemed to me to be my spine, making it almost impossible for me to turn my head.
After a day or two of no improvement, my mom took me to the doctor. My regular doctor was out of town so she got me in with Dr. X, a physician I had not seen before but who was able to see me quickly. With no more of an examination than feeling different parts of my neck, the doctor informed me that I was developing a “buffalo hump” caused by carrying too much weight; there was nothing more than that wrong with me. (Let me add here that there definitely was something wrong with my neck, and it had nothing to do with my weight.)
The appointment with Dr. X culminated in my first doctor-prescribed diet (I had been dieting for at least 5 years on my own by this point). Looking back, I can see that the diet was, from any reasonable person’s perspective, a lesson plan in eating disordered behavior. Without going into specifics, let me explain it this way: I began each week consuming zero calories the first day. Beginning on the second day, my caloric intake would gradually increase throughout the week (never to a level that was actually high enough to sustain me physically). Then, on the last day of each week, I could eat or drink absolutely anything I wished. The following day, the weekly cycle would begin again.
I saw Dr. X twice: the visit I just shared and an appointment one month later to check the progress of my weight loss. To this day, I know exactly how much weight I lost that month. I wish I could erase that number from my head, because it was (and is) unimportant and temporary. What I gained that day was permanent: I gained information about how to deny my body any kind of sustenance or nurturance, and a very clear understanding that, no matter what is going on with my body or what might actually be the culprit of any discomfort or illness I have, it is my fault. My body is simply too big.
Fast forward five years to 1999. I had finally put the lessons from Dr. X to good use and was “becoming healthy”. At that point, I was in college in southern California and believed that becoming healthy meant losing weight. I had, in retrospect, been struggling with my eating disorder for several months. However, I remained completely in denial, even though my therapist was beginning to voice some concern. Increasingly, I was feeling sick. Utilizing the campus health center, I began seeing a nurse practitioner. I’ll call her Nurse Practitioner Y.
She listened to my complaints of achiness, fatigue, etc. and began testing me for several auto immune disorders. When all of the test results came back negative, she began explaining to me the health consequences of obesity. I remember like it was yesterday when she photocopied a height and weight chart for me, circling a weight that she thought was reasonable for me to reach. One main problem (although there are many) with this appointment was that Nurse Practitioner Y took absolutely no weight, weight loss, weight gain, or food intake history. At that time, I had already rapidly lost a significant amount of weight.
She did not know this, though, because she did not ask. I was “obese” and, therefore, needed to lose weight. She gave me recommendations of what a “healthy” diet would be, clearly assuming, incorrectly, that I was currently eating a greater quantity and less nutritiously than she suggested. Nurse Practitioner Y recommended that I return to see her weekly so she could monitor my weight loss progress. I, however, knew that my weight loss had leveled off – I was no longer losing at the rate I once was, even though my behaviors had not changed.
Now knowing that I would be tested regularly by the scale, I knew I had to do something to force more weight to come off. That day was the first day I purged. And Nurse Practitioner Y consistently gave me congratulatory reports each week as I, she again assumed, followed her diet recommendations so strictly. This routine continued until one of my best friends insisted on going to the clinic with me so that I could tell Nurse Practitioner Y what I was actually doing with food and exercise. Nurse Practitioner Y then quickly became one of my strongest supporters and advocates for getting the help I needed. (I add this because she truly was a great health care professional, with great intentions. But, by making assumptions about my health and food/exercise behaviors based on my weight, she did damage.)
However, around that time we learned that I had developed a cardiac arrhythmia. My weight became much less of an issue once my heart was showing signs of damage. Over the course of these initial eleven or so months of my eating disorder, from the time it developed until I reached the weight at which I was first hospitalized, I again know exactly how much weight I lost. I also know what percentage of my body weight I lost.
Neither the weight nor the percentage of size lost was permanent. Thankfully, my body got much more efficient at holding onto fat. But I did lose things permanently during that time: For example, I have little to no memory of most of 1999 and 2000. And I gained: tons of regret for the things I wish I had had energy to do differently in college; long term concerns for my health (again, that have nothing to do with my weight); and layers of self-criticism that still overwhelm me on certain days.
Ten years later, in 2009, I was doing important, well respected work in the eating disorders field in Washington, D.C. I was seeing a dietitian weekly, because I had been struggling with nourishing myself well again (I guess I was seriously struggling with feeding myself, but the denial had crept up on me again). And I was recognizing ways I could improve caring for myself in general. I had not gone to the doctor in several years and knew I needed to have a physical, etc. Because I knew how much I dreaded seeing any physician and having the inevitable weight discussion, my dietitian did a lot of wonderful outreach to health care providers she knew to find out who might be the best, most weight neutral physician for me to see.
She identified a female doctor, referred to here as Dr. Z, and I scheduled an appointment. I did a very good job of advocating for myself. I immediately disclosed my eating disorder history, my cardiac history (including that my chest had been hurting a little lately), and my insistence that any health care provider I work with focus on my health, separate from my weight. Dr. Z listened, took some notes on her laptop, told me she completely understood my desire to focus on my health instead of my weight, and then proceeded to drop the big, nonchalant “but”… But, probably my weight would drop some if I was eating less (she was determined that the caloric level the dietitian had me on was too high) and started exercising 20 minutes, three days a week on an elliptical.
I am honestly convinced that she did not believe (even with prior hospitalizations for an eating disorder) that I struggled to eat enough and that I was walking miles every day. I left feeling defeated and believed that if I just exercised more I could lose weight and go to the doctor – just once – without my weight being the focus of an appointment. Thankfully, within a week or so after that appointment, it became clear to the (other) health professionals on my treatment team that I needed to enter treatment again from my eating disorder.
My second appointment with Dr. Z’s office was to have the required tests run for admittance to the eating disorder program. One of the tests required was, again, an EKG. By this time, I had developed bradycardia. Because of that, when I went into treatment, I was put on one hundred percent exercise restriction to give my heart time to heal. Twenty minutes on the elliptical could have been twenty minutes too many.
My appointment with Dr. Z was four and a half years ago. Since then, I have learned an immense amount about my body and about my nutritional needs, thanks to the eating disorder program I attended soon after her elliptical recommendation. The past fourteen years of struggling with an eating disorder that has come frighteningly close to taking my life more than once have taught me much. They have taught me that there are health care providers who understand the mechanisms of bodies and metabolism – my metabolism – and do not subscribe to the idea that my body is diseased because it is large. They have taught me that when one finds those health care providers, they are not to be taken for granted, because they are few and far between (which is the main reason I left my job in D.C. and moved to upstate New York). And most of all, they have taught me that the most important thing I can do to take care of my health is to know my body and to speak my truth.
I know that this post has been a little disjointed. Frankly, I feel a little disjointed about a lot of things going on in the world – and specifically within organizations like the AMA – related to health and weight. So, let me try to end succinctly with a few words directly addressed toward the AMA:
You look at me and recommend that my body be labeled diseased. To you I say: My body has a history and a complexity that is more beautiful and dignified than any word in any language. My body is mine, mine alone, and it is sacred. My body is not diseased. Yet, I do fight to overcome a disease. A disease IN my body, not OF my body. A disease that I share with many. A disease that deserves to be labeled and fought hard against: A disease of self hatred, self criticism, self surveillance. A disease of internalized beliefs based on outsiders’ gazes. A disease of ‘What else is wrong with me?’; ‘I’ll never be enough’; ‘I’ll always be too much’. A disease: MY BODY IS WRONG. This is the disease I and so many others fight. My cure will be to speak my truth, my body’s truth. My body is mine and holds a beauty and a complexity and a health that can never be diagnosed from the outside. And you are not invited to name it.