Focus eating disorder recovery on regaining identity, not the scale

The first article in a “patient and doctor” series on understanding eating disorders

 Audry Mattle, diagnosed with an eating disorder at age 13, was told that she was The Problem. She was manipulative, a hopeless case. Being a “good Audry” or “bad Audry” became defined by weight. Audry felt reduced to nothing but a number on the scale … until she met Dr. Richard Kreipe, who listened to his patient. The Diary Healer is honored to share both sides of the story.

This is Audry’s story

When I was diagnosed with an eating disorder, I was 13 years old. I couldn’t comprehend what was happening. I had no idea what an eating disorder was. I sat in the doctor’s office, listening to her describe my illness and trying to pinpoint the moment things went wrong. When did I become terrified of food? Why didn’t I recognize this? This isn’t me. I wouldn’t do this. I thought there had to be a mistake. I was just trying to be healthier. I could just eat the food; gain the weight – then everything would be over.

My 13-year-old mind began calculating — a month, maybe two, to get through this. Now, years later, I look back at that girl. It’s hard to believe that she was me. The long sequence of events that led to that moment are foggy, but some memories stand out. I was sick for a while before a diagnosis was made. It was certainly not a flip of a switch or a conscious decision of any sort. It was likely a combination of circumstances mixed with my perfectionist personality and genetic predisposition.

Trying to pinpoint a trigger only leads to a viscous cycle of “what if’s.” I do remember my health teacher taking a bag of chips from my hand and telling me “they will make you fat.” I was kicked off my 4X1 team because my thighs were too big. Yet, I don’t remember wanting to be skinny or lose weight. I just wanted to be better, to be in control, to be strong enough and good enough.

I remember sitting in my room staring at my clock, willing it to five o’clock because that was when I could eat dinner; not a second sooner. Looking back, I realize that I was decreasing the amount of food I ate and cutting out foods that were deemed “unhealthy.” I became withdrawn and felt the need to exercise in secret every chance I got. The eating disorder took control of my life, convincing me I was just being healthier until I felt worthless without it.

The treatment was helping to keep me alive but was not treating my eating disorder

I have been in and out of hospital, in several different treatment programs, and have seen countless doctors, therapists, psychiatrists, and nutritionists. I look back at most of these experiences with a pit in my stomach.

Not all of my treatment was bad. I met great providers whose medical care saved my life, but for some reason, their treatment wasn’t working. I came to believe that I was destined for hospital beds and feeding tubes. A doctor even told me such. I was a hopeless case; I was the problem.

Now that I am in a new place with my eating disorder and I am in control, I have a new perspective. I was not the problem. Food was not the problem. My providers weren’t the problem. The problem was the mindset of eating disorder treatment. A disease of extremes was being treated with extremes, creating a wall between me and my providers that the eating disorder fed on. It was the stigma and mistrust from within the very environment that I was supposed to heal. My treatment became so focused on the eating disorder that I, the patient, was left behind.

In my treatment, I was told that I was manipulative. Multiple doctors refused to talk to me about my treatment because they feared that doing so would “engage my eating disorder.” I was told that I could not run, an activity that for years was where I found joy and strength. Each of my actions became an illness symptom, and I was reduced to nothing but a number on a scale.

Weight determined if I was ‘good Audry’ or ‘bad Audry’

My health, my happiness, my success or lack of, my being a “good Audry” or “bad Audry” became defined by weight. Each appointment I would get in a gown, no clothes, just a gown – stripping any sense of identity I had left. Walking through those doors I became an eating disorder and nothing else. I would stand backwards on the scale feeling nauseated. The number that appeared would dictate how the day would go. It was a secret. Something my doctor knew and I was forbidden to know. She would walk into the room already knowing the number, with her mind made up about how my past week had been, based solely on two or three blaring digits. The game would begin. I would try to read her expressions. Nothing I would say mattered anyway, so I tried to come up with the story she wanted to hear. Whatever I could try to be less of a disappointment.

I didn’t want to lie and I never really did. But the truth, how I really felt, couldn’t be put into words and what did it matter anyway? There was the number. That’s all that mattered. The awkward dance continued.

The doctor would do a 24-hour recall of all the food I ate. I would compliantly reply, dying more and more instead. That was my life. That was all I was. That food I choked down. I tried to read her face again. Was she disappointed? She was. And I was a failure. Next came the secret meeting – the worst part of all. She left the room to get my mom or dad, or if they thought things were really bad they both would come. I would hear the footsteps leave and one or two more pairs of feet shuffle back. They would talk in hushed voices outside the door. The number was exchanged. Now everyone knew but me.

The only power was in the scale

My parents were not so good at hiding the secret. They would come in looking slightly relieved and I would know the number went up, or they would look fraught and concerned, and I would know the number went down. The next question: “How do you think Audry is doing?” By this point it was like I wasn’t even in the room. I felt like I wasn’t. I felt almost like I was dead. I remember asking myself if this is what it felt like to be a ghost. I faded into the background. I would just sit in silence while my mind screamed.

I felt so numb, I wanted to rip my body apart just to feel something. Just for some release. I would hold it together though, at least in that office. It’s not that I didn’t want to try; I did. But I didn’t know how. I held no power. The only power was the scale and the doctors that worshiped around it. My voice was nothing, so I went silent.

The refeeding rollercoaster

I went through years of losing weight and refeeding. Each time when refeeding after a period of slow starvation, I would hit this point where my brain turned back on. It would be almost like a flip of a switch. I would suddenly have so much energy, so many thoughts and feelings that I wouldn’t know what to do with myself. I used to call them food highs. I seemed to lose a sense of self-control and maturity. Not in a way of misbehavior, but in my thoughts seeming to come so fast that they turned into actions before I even realized what I was doing.

My body had started functioning again, but I was lagging, not quite inside my own flesh. The physiological Audry and the real me were out of sync. It was at these times that doctors saw what they wanted to see – a higher number on the scale, color in my face, a new sense of energy. I must admit I displayed all signs of happiness; almost in an extreme, childish, giddy sort of way. Why still puzzles me, because inside I felt like I was suffocating, trapped inside this foreign body, muzzled by a sickening display of ecstasy that I could not turn off.

The dangerous façade of appearing ‘well’

I had only the choice to wait for the inevitable crash; the one I knew was coming, but still every time seemed to shock others. “But you seemed so great. You were doing so well.” They would say. As these events continued to repeat, I tried to give hints, small cries for help, but no one could see past the façade I couldn’t turn it off. I didn’t know what to do. Starvation turned everything off. I couldn’t think. I couldn’t feel.

My body used all its energy to fight for survival leaving me cold and numb. In starvation, I was safe. It was with energy that I feared myself. It was then that I felt pain – pain trapped inside me that I couldn’t release. I would sit on my floor screaming. Literally unable to control myself, trembling, hyperventilating, cutting my skin to try to let it out, try to catch a breath because it would surely suffocate me. I felt the only way I could live was immersed in slow death.

Why taking weight off its pedestal was vital in regaining self-identity

Not until weight was taken off its pedestal and put back in its rightful place as one of many determinants of health, was I able to regain my identity as an individual with an illness rather than as the illness. I often describe my life in three stages: before my eating disorder, during my eating disorder, and the all too ill-defined and enigmatic recovery. The way I present it here, it seems like a flip of a switch; however, the stages are more of a blurred continuum that even I cannot put my finger on. For me, one of the hardest misconceptions was thinking that recovery was returning to who I was before the eating disorder. I thought I must wipe myself clean of it and almost forget it was even a part of my life. But that was an unobtainable extreme.

Reshaping the mark that the eating disorder makes

Eating disorders are diseases of extremes – black and white, all or nothing. I was to either be perfect or simply not be. I had to be the sickest or the perfect “recovered” patient. The biggest component of my recovery was sculpting myself to have an identity somewhere in the gray.

I often use the analogy of a sculpture to describe myself and my recovery. Once a mark is made, that mark cannot be undone. My eating disorder was and is part of me. What I had to do was reshape the jagged and deep cuts the eating disorder made to create an identity within whom I loved. Because the same personality that made me a susceptible victim of my illness, makes me the intellectual, passionate, and empathetic person that I am and love.

Beginning the journey of re-sculpting myself

I began the journey of re-sculpting myself in a more tangible manner. Before running became something the eating disorder took from me to use as a means of burning calories, and ultimately self-punishment, running was something that made me feel alive. I started running in second grade with my mom. I transitioned from rides in the jogging stroller to running beside her in pink and blue Sketchers that lit up when my foot struck the ground.

Also, being an enthusiastic horse-lover at the time, I would pretend that I was a horse racing around the track. I was the girl who would line up the boys at recess and race then one by one; not growing tired and beating them all. In seventh grade I found my love in cross country.

I don’t remember an exact turning point when running became something else for me, but I know it was sometime during seventh grade track season. The joy seemed to disappear, and an activity that was once exhilarating became exhausting. I started isolating myself and exercising in secret. If I did not exercise, I became overwhelmed with anxiety and needed to make up for it by eating less.

Loss of identity and meaning

Running, and exercising in general, was most definitely stolen by my illness and became a symptom of its endeavors. And that is exactly what an eating disorder does.

It steals every part of you that has meaning so that you are connected to it and only it. The flaw I see in treatment that bans exercise, especially for patients who find a crucial part of their identities and relationships in those activities, is that it lets the eating disorder win. Eating disorders are about far more than losing weight, not eating, or being skinny. Those are the vectors, and although they pose serious physical health problems, they in and of themselves are not the illness. Such symptoms are the tangible contour in which the illness presents to sever a person from all that they are. I believe treatment needs to look deeper than superficial symptom management and attack the roots of the illness.

Exercise restriction made me sicker

Being told I could not exercise may have helped prevent further weight loss, which I do not deny was important at the time, but overall it made me sicker. Not exercising isolated me more from my family. We stopped family hikes and I could no longer join in on walking the dog.

I had to quit my cross-country team, which took me away from my friends, and I wasn’t allowed to ride my horse, which was the place I felt most at peace. It made me miserable and soon became a means of self-destruction. Even when I was physically safe to exercise, I did not because I became convinced that I did not deserve it. I was told that exercise was a symptom. Exercise was bad. There were times when I tried to get back to running, but it was so constricted and dictated by so many rules that it was not the same. I could only run one mile. I had to eat this much. I went on a bike ride with my dad and when we got back, he sat there and calculated the calories I burned and how much extra I had to eat now. Sure, I was exercising, but the eating disorder still owned it. So, I stopped.

I understand the dilemma here, and it is one that I struggle to pose a solution for. How do you not restrict someone who is physically unstable and/or unsafe in their actions? To this question, I did not at the time have a sufficient answer. What I can do is explain how it worked for me.

At first, I just had to dive in, and I needed to be trusted.

I needed to be trusted and to learn to trust myself

When others — my doctors, my parents – expected me to fail and, therefore, held me back, I got nowhere. I needed to be trusted and given enough space to make my own mistakes so I could learn to pick myself up and trust myself. I made mistakes. I ran too much too soon and felt exhausted. I tried to overcompensate by eating a lot before running and got sick. I cried and “gave up.” But through that I learned to ask for help from my doctors, parents and coaches. I started to learn a balance that made my body feel good, and I was able to once again feel the endorphins and natural high that comes with running. It was hard to say the least.

I played the “what if game” numerous times. I put myself down for not being good enough. It was not all great.

I did not go out for every run thinking “I love this.” But through falling down and picking myself back up, I was able to carve away at the sculpture and slowly pull running away from my eating disorder and back to me. Am I perfect? Will I ever be perfect? Will I never think about calories when I run or blame a bad performance of time lost being sick? No. All these thoughts happen and will happen.

The difference is not all in the thoughts, though they have eased, and I believe will continue to lessen. The difference is in how I treat the thoughts. I learned how to accept them and not hate myself or punish myself for thinking them, but rather challenge them. I learned how to be uncomfortable and live with that. I learned how to eat for myself; to fuel my body and mind.

I am learning how to enjoy food, and work through the eating disorder thoughts that linger without letting them consume me. I am learning to be imperfect in my recovery.

The turning point — Dr. Kreipe put the onus in my hands

A huge turning point in my recovery was when pediatrician Dr. Rich Kreipe agreed to not weigh me and to let me run.

I started seeing Dr. Kreipe at age 16 and continued to see him until 18 when he retired. By the time of our first appointment, I had spent years being dictated to and picked up and carried. I had stopped taking care of myself. Being taken care of had become safe and easy. Taking care of myself was what was hard. I was labeled as a hopeless case. My previous doctor said she felt like she didn’t have the skills to help me anymore. I was told I was “too sick” for residential treatment and that I needed to be inpatient again, but that wasn’t working. When I first went to see Dr. Kreipe I expected it to be the end.

Dr. Kreipe saw the person in me

I expected Dr. Kreipe to be just like everyone else, and I had given up. For months that was the way it was. He and my mom discussed different treatment facilities while I just sat there, waiting to be shipped off again. I remember telling myself I just had to make it to 18 and then it would all be over. I don’t know what exactly made me speak up, but one day I said I didn’t want to be weighed and that I wanted to run. I had said these things before and was immediately shut down, but this time Dr. Kreipe said “Yes.” I started crying.

In saying “yes” to me, Dr. Kreipe put the onus back in my hands. He gave me the opportunity to actually face my eating disorder rather than just brush it under the rug. I had to really think about what was me, and what was the eating disorder. I had to pick myself up, which was the most difficult yet empowering thing I have ever done. It doesn’t mean I am “all better.” It doesn’t mean I will never struggle. But it does mean that I am worth getting better.

Recovering is continuous because I can always grow

Another key to my recovery was throwing away the notion of being recovered. I don’t think I will ever be “recovered” because to me that is an absolute. I am and will be recovering because I can always grow. I still have thoughts that I would call the eating disorder. I still struggle with depression and anxiety on a daily basis. The difference now is that I have the power and the strength stand back up when I fall. Recovering is dynamic and that is what makes it incredibly hard, but also incredibly beautiful.

About Audry

I was diagnosed with an eating disorder at 13, but I likely started developing it around age 11. I was also diagnosed with depression and anxiety shortly after. Looking back, it is clear that I struggled with these from early childhood on. Today I am a college student studying biology and philosophy at the University of Rochester, New York. I am also a competitive distance runner, and I volunteer as an Emergency Medical Technician (EMT). I hope to work in the medical field and use my experience and expertise to give a voice to those with mental illness.

In next week’s Diary Healer, Dr. Kreipe will share reflections on Audry and her ‘turning point’ in eating disorder recovery.