Chronic Illness, Marginalization, ED and Me

 chronicillnessEDGrowing up in image conscious West LA as an avid ballet dancer was a recipe for eating disorder disaster. In a primarily white ballet school that primed us to be professional dancers, the pressures were high. Girls were told they couldn’t get a part in the Nutcracker unless they lost weight. Attention was given only to the girls with the ”right” long-legged, thin, white bodies. When a friend of mine who is Black wanted to be a snowflake in the ballet, I was not surprised when our teacher said in her British accent, “There will be no dirty snowflakes.” All these conditions of white perfection seemed normal at the time and even the whitest of little girls were not immune to the self-harm and self-hatred brought on by extreme scrutiny and expectation.At the time, my pre-pubescent body was deemed nearly “perfect” for ballet. As a bi-racial Mexican American, I came out thin, white as the driven snow, with blue eyes and red hair. I inherited my mom’s long legs and my father’s apple shaped Mexican body with a thick waist and wide ribs. But looking at pictures from that time, there is no way to really tell that my body was less than ideal, despite the fact that my ballet teacher constantly corrected my posture by saying, “Stick in your ribs. Stick in your ribs.”I was 12 years old, going to a competitive college prep school and dancing almost everyday after school. My peers mostly went to similar schools surrounded by the demands of getting good grades and battling their bodies to fit into the perfect ballet ideal. I was an observant kid and watched as my friends began to stop eating at the onset of puberty.It was the end of my 7th grade year when I was invited to join two of the cool girls at ballet to have a sleep over. I was honored as they were a year older with better technique and form than me. Joanna’s mom picked us up after our Friday 6 pm class. Jen and I piled into the familiar old Volvo and we headed to the local salad bar at Gelsons. Once at Joanna’s house, Jen came up with an idea: “Let’s weigh ourselves before we eat our salads, and then after let’s go to the bathroom and come out and weigh ourselves again.”Ok, I thought and proceeded to note my weight, eat the huge salad, and go into the bathroom. I sat there for several minutes waiting to poop. Nothing happened. Afterward the three of us took our turns weighing ourselves. This activity seemed odd to me, but I wanted to fit in so I innocently participated. It wasn’t until I was 25 that it dawned on me what had really happened. The friends I admired were inducting me into their dangerous ritual of binging and purging.By the time I was 13 my life had drastically changed. One day at ballet rehearsal I could not bend my knees. I sat on the floor, legs splayed out in front of me, confused by the pain in my extremely swollen knees. Shortly afterward, I was diagnosed with a very bad case of the autoimmune disease Lupus. According to the National Institutes of Health, women are at greater risk of having Lupus than men. Blacks, Native-Americans, and women of Latina decent like myself, have even greater risk. In addition to my joints, the disease attacked my heart and lungs leaving it hard to breathe. Within months the disease began a slow and steady assault on my kidneys.I was in a battle of life and death. In an effort to halt the disease I began monthly chemotherapy treatments and the doctor put me on massive doses of steroids. I had to quit ballet and change to a less stressful high school. Consequently, I started 9th grade with the prepubescent body of an 8 year old, a puffy round “moon face” and a “buffalo hump”—not so endearing terms experts call the redistribution of fat in one’s face and on the back of my neck caused by the drug. These side effects included extreme water retention, muscle wasting in my legs, and additional fat accumulation around my stomach. I began shopping for copper colored wigs just in case I lost it all my hair.Good-bye “nearly” perfect ballet body.I was terrified. Not so much about dying, which was very much on the table, but by looking like I was a fat, pudgy, balding little girl. I wanted to fit in but I knew that I had no chance at a new high school where popularity was determined by strict ideals of attractiveness. My body image plummeted. I ate lunch alone every day behind the math classroom. I didn’t want to be seen.In an effort to save my kidneys doctors put me on a highly restrictive diet prescribing playing card portions of food. All food was deemed problematic for my failing kidneys, except sugars and carbs. To say food was the enemy is an understatement and I soon found tricks to stave off hunger. I began to see food as something that would add fat and increase water retention. I became very controlling about eating even the allowable amounts of nutritious food as tried to “save” my kidneys at all cost.My dad carried a picture of the bloated new me in his wallet that he shared with friends and strangers to punctuate the vivid description he gave around my grave condition. This action might seem cruel by American standards, but in Mexico this dramatic style of storytelling was the norm. In hindsight, I realize he did this as a way to cope with the absolute terror he felt living in another country and unable to save me. My mom lost her faith in God and herself as she couldn’t understand why something like this could happen. I only really knew how bad my condition was when I looked into the faces of my parents. Despair and concern complimented their hopeful declarations of:“It will be alright.”This lasted for 3 ½ years. The treatments weren’t working. I’d have to continue with chemo and the steroids as the Lupus had just about destroyed my kidneys. I told my mom I was too tired to keep going and was ready to die. To that she got a second opinion and quickly fired my doctor. My new doctor had a life saving plan: “Take her off all medications, let her kidneys fail, and get her a kidney transplant.” This was an option that was never presented by my previous doctor. My mom got tested and by the grace of god, she was a match. A month later the day before my 17th birthday on March 6th, I had a kidney transplant and second chance at life. My dad flew in from Mexico City and just after the transplant, while I was recovering in the hospital he snapped a bunch of pictures of me sitting in my pink robe to share with the rest of the family. No longer on massive steroids, bones jutted out from every joint. My eyes were sunken and gray. I won’t go into the numbers, but the steroids had hidden the very reality of my condition: I had been starving myself.I recently read a study that confirms what I’ve always known. “Visible signs of illness may cause embarrassment, which can lead to body image disturbances that have harmful consequences, such as the development of disordered eating behaviors.” Twenty-five years ago little was known about Lupus, let alone the connection between illness and disordered eating. Today when we speak about eating disorders, we don’t think of those with illness or disability as sufferers and it’s time we do.“Eating disorders affect people of all ages, sizes, backgrounds, ethnicities, gender identities and sexualities. Unfortunately that diversity is rarely reflected in the way eating disorders are discussed and treated. In partnership with Reasons Eating Disorder Center and The National Eating Disorders Association (NEDA), the Marginalized Voices campaign is confronting the prevailing myths about who struggles with eating disorders. By sharing this video and talking about the issues, we can start a conversation about the many faces of eating disorders.”

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