ED NOS: The Silent Sickness

By Fallon Kunz

Photo by Hanna Thieme, 16
Massachusetts

ED NOS? What the heck does that stand for? It’s a diagnostic abbreviation that stands for Eating Disorder Not Otherwise Specified. Research shows that more than 50 percent of adults seeking treatment for eating disorders are diagnosed with ED NOS.

Eating disorders are very serious, and can be life threatening. They affect people of all genders, ages, backgrounds, and even weights.  Some are easier to recognize than others. All are characterized by severe disturbances in eating behavior and a distorted perception of body image.  Individuals suffering from eating disorders may use a variety of strategies to achieve an ideal weight, combat a fear of gaining weight, or cope with a seemingly uncontrollable situation. Here, a contributor shares the story of her own eating disorder struggles and diagnosis.

On July 19, 2010, my nurse practitioner confirmed what I had known for just over a year. Underneath the heading Diagnoses were the words infantile Cerebral Palsy, migraine headaches, and finally “eating disorder, unspecified.” Most people would be terrified of such a diagnosis. For me, it was a welcome relief. It meant I wasn’t crazy. It wasn’t all in my head. I had not imagined its existence or tricked myself into thinking I was ill. No, it was real. Alice* was listening, and she was going to help me.

Unspecified eating disorders are the most common type of eating disorders seen in outpatient clinics.  According to The Huffington Post, nonspecified eating disorders make up 70% of all diagnoses among patients with eating disorders.  Also known as ED NOS (eating disorders not otherwise specified), these disorders come in all shapes and sizes. ED NOS is a “blanket term.” Currently, The Diagnostic and Statistical Manual of Mental Illness (Fourth Edition) basically says a patient has ED NOS if he or she fails to meet all the diagnostic requirements for Anorexia or Bulimia.

Most of us know about the spotlight disorders. Anorexia and bulimia seem to get all the media’s attention. However, most people have no idea that other EDs (eating disorders) exist. Most of these lesser known disorders never enter the public’s consciousness or come up in a high school health class discussion. Some of these are Binge Eating Disorder (BED), Bulemiarexia, Food Addiction, Orthorexia, Non-Purging Bulimia, CS (chewing and spitting), and Pica. Each of these is unique. Each has its own set of symptoms, and treatment for them is often as individual as the patients themselves. However, they all are considered ED NOS by the medical community.

People with ED NOS may do some of the following behaviors:

• Binge eat (eat abnormally large quantities of food in a short period of time—for example, eat an entire package of Oreos in an hour)
• Hide food
• Eat non-food items, such as chalk, dirt, crayons, etc. (aka  Pica)
• Obsessively weigh themselves (e.g., step on the scale daily, or several times a week)
• Eat very fast
• Prefer to eat alone
• Obsessively count calories
• Always seem to be dieting
• Systematically cut out entire food groups from his/her diet
• Excessively use laxatives, diuretics, or vomit after meals (all forms of “purging”)
• Skip meals
• Exercise excessively

So what causes a person to develop ED NOS or another eating disorder? The short answer is that no one knows exactly. So to get some answers, I went straight to the source–women who suffer with ED NOS every day. Rachel believes she was genetically predisposed to an eating disorder. She has a family member with BED, and has been fighting various eating disorders for nearly 10 years. Emma’s ED NOS began when her daughter became addicted to drugs and alcohol. Nakita isn’t sure of a diagnosis, but she has been periodically binging and vomiting for 35 years. She isn’t sure what caused it, but it began in high school. She was an athlete and began this cycle to control her weight.

For me, there wasn’t one pivotal moment in my life that triggered my ED. What I can tell you is that I was always uncomfortable in my own skin…I was a very small child. This plus my Cerebral Palsy (CP) made me self-conscious. By eleven, I had accepted my disability. But my CP stunted my growth and I gained an incredible amount of weight. My new body came complete with acne and a “muffin top.” It was humiliating. I felt fat and unattractive. That year, I began binge eating. I regularly hid food in my bedroom, backpack, and purse. Diets were also regular occurrences. Bigger disappointments needed more food. Diets regularly failed me. This cycle only shoved me back toward the refrigerator. I continued this way throughout middle and high school. Shockingly, no one noticed. But then again, I was good at hiding it. Binge eating was never discussed in my health classes. This sounds unbelievable, but I thought my behavior was normal. I honestly had no clue I was developing ED NOS.

In college, this behavior escalated. Starving myself was never intentional. On a particularly busy day, I simply forgot to eat. After bingeing, I never wanted to eat because my stomach hurt so much.  This pattern of bingeing and starving continued until last year. God began dealing with me about my eating habits in May. By October, I had found a support group and attended my first Overeaters Anonymous meeting online. By January of 2010, my family and friends knew. As of this writing, I have not binged in almost six months and haven’t starved in two weeks.

Are you reading this and seeing yourself or a loved one here? If so, what do you do?

First, you tell someone. If you are concerned for a loved one, tell them so. It’s a difficult conversation to have, but it is vital. If you’re suffering, tell someone trustworthy and supportive. A doctor, parent, or teachers are safe bets. It is important to remember that ED NOS is just as serious as other eating disorders.

Second, you get educated. Use books, the internet, and your medical professional to get a handle on what you’re dealing with. Some of the books I’ve found helpful are The Battlefield of the Mind and Women, Food, and God.

Third, get treatment. Treatment does not necessarily mean inpatient eating disorder rehab. However, this is always an option. ED’s can be treated by seeing a therapist, counselor, nutritionist, or other expert. I have personally known some people who have successfully treated their eating disorders through 12-step programs such as Overeaters Anonymous.

I hope this article has given you a better understanding of ED NOS. It is a very serious illness that requires treatment. ED NOS is just as valid as any other eating disorder. If you suspect that you or someone you love has it, please get help.  It is important to remember that it is possible to recover.

* Author’s note: To protect the privacy of others, all names-with the exception of authors cited-have been changed. This article is dedicated with all my love to the brave women who shared their hearts with me for this article and to the ladies at DailyStrength who have blessed my life with their friendships.

For a comprehensive guide to information, news, resources, and research efforts related to eating disorders, visit the National Eating Disorders Association (NEDA) website at www.edap.org.

Editors Note 10-5-11: Want to  make “Real the New Ideal?” Join NEDA for their tween summit on  body image, self-esteem and media, October 15, 2011.