“FAT” the letters are scarred into the skin above my knee and into my brain. FAT. How can such a small word have such a lasting impact on my life? It is this word that keeps bouncing around in my head, keeping me from recovery…but why? Given my weight (medically obese by BMI measurements and my 5’2” frame) and my ED behaviors (which do not fit neatly into the concise box of anorexia or bulimia), I had, and have, a deep-rooted feeling of fraudulence as an eating disordered person as a result of my ED-NOS diagnosis. I have always felt as if I were not “sick enough” to deserve treatment, that I did not fit into the neat little diagnosable boxes so I could not possibly have an eating disorder, that I was fat, and, as we all know, fat people cannot possibly have an eating disorder *sarcasm is intended in that last statement*. I have even had a prior therapist who agreed with all those thoughts, rejected the possibility of me having an eating disorder and refused to treat me for a “disease I did not have”. The genesis of these thoughts, however, IS, in fact, Ed. The one who keeps these invalidating, self-disparaging thoughts in my head is, again, Ed.
To me, ED-NOS has always felt like a patronizing pat on the head; a diagnosis so that I quit bothering the nice doctor and go home. What I realize now is that ED-NOS is a very real, very serious, yet very treatable eating disorder…thus the ED part of the ED-NOS diagnosis. As Dr. Jennifer Thomas, author of Almost Anorexic, states, “Don’t let some words in a book or some numbers on a scale prevent you from getting the help that you need.” In fact, in a longitudinal study on the mortality rates of patients with EDs, Dr. Thomas found that patients with ED-NOS had a mortality rate of 5.2%; compared to a 4% mortality rate for those with anorexia and a 3.9% rate for those with bulimia. Additionally, in her meta-analysis of the physical and mental effects of EDs on the body, Dr. Thomas found ED-NOS just as, if not more, medically critical as anorexia and bulimia. Thus further proving the fact that ED-NOS warrants being taken seriously and is deserving of treatment. The diagnosis does not matter, your health does.
My diagnosis of ED-NOS reminds me a lot of my little sister, Morgan’s, journey in school. For as long as she has been in school–she has recently begun her senior year– Morgan has had an Individualized Education Plan (IEP) to accommodate her unique needs. Morgan has difficulty reading, takes longer than her peers to complete assignments, and has issues with spelling and writing. Yet, seventeen years after her birth, there is no diagnosis as to why her brain processes words the way it does. She has been tested for dyslexia, ADD, apraxia and just about every other disease/disorder at which you can shake a medical textbook. Despite a lack of diagnosis, does that mean her problem does not exist? NO! Her brain processes slightly different that a typically functioning brain—despite not having a diagnosis–and she just needs a bit of assistance in the form of IEP accommodations. Did my parents give up on getting Morgan the help that she needs when she was labeled “Undiagnosed Learning Disability”? No, they worked with the school to create a plan that would make the curriculum more accessible to her. Together, with the school, they helped write an IEP that allowed her additional reading practice throughout the day, extended time on tests and assignments, and the use of a reader if necessary. In short, not having a diagnosis was no excuse for my sister not getting the help that she needed; she received the help she needed, tailored to fit her unique needs, without having a neatly boxed up, diagnosed label.
When it comes to seeking and receiving treatment, it pays to work like my sister. A lack of diagnosis (or a diagnosis of ED-NOS) does not mean you lack the right to necessary and life-saving treatment, resources and other essential services. It does not matter your specific diagnosis; the point is, if you believe you may need help…go get it. Do not let the words of others, Ed or some overly specific medical categorizations keep you from living a life free of disordered eating. You are worthy of a happy, healthy Ed-free life no matter what your diagnosis. Go after that life, it is amazing!
Even to your old age and gray hairs
I am He, I am He who will sustain you.
I have made you and I will carry you;
I will sustain you and I will rescue you