RheasOfHope

one girl's thoughts on life, mental illness, eating disorder recovery, and hope.

When you think about ED-NOS September 10, 2013

 

            “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!

Me, on the left, and Morgan
*photo credit, Mandy McDonough photography

Isaiah 46:4

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

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19 Responses to “When you think about ED-NOS”

  1. […] On the bright side, I recently started following a new blogger who seems to have some in common with me. In this stressful and unique struggle with ED, I like finding someone who seems to put into words what I can’t. I’m satisfied with my EDNOS diagnosis. I feel as though it finally gives legitimacy to the issues I’ve been having for so long. “Unfortunately, given my weight and my ED behaviors (which do not fit neatly into the concise box of … […]

  2. I also am EDNOS. (And 5’2″ in height) I was told by a friend in high school that I didn’t have an ED because I was normal weight. Then told by a friend later in life that I didn’t have an ED because I was overweight. “I must not be sick enough to get help” Or “I am even failing at my eating disorder” are often thoughts in my head. Thanks for this post! I needed to hear these things! Wishing you the best! Take care!

    • rheasofhope Says:

      I am sorry that your illness was dismissed by so many people in your life. It is times like these that there was greater awareness on eating disorders; they come in all shapes, sizes, and forms, and people need to know that. Regardless of a diagnosis, if you believe your thoughts/behaviors with food and weight are a problem…get the help you need. Take care.

  3. royaltyandrainbows Says:

    When I read the first paragraph, I was going to ask if you had read Almost Anorexic, but i see that you have.

    I was “lucky enough” to have the diagnosis of bulimia. However, when I started receiving treatment, I was also medically obese. I refused to believe you could be obese AND have bulimia. Even as I would have my head in the toilet, I would be thinking, “I’m not really bulimic.”

    My refusal to accept my diagnosis had a lot to do with public opinion and stereotypes of eating disorders. I too felt like a fraud. Like I was making a mockery of “real” eating disorders. Because I couldn’t accept that I had an eating disorder, I caused my body a lot of damage in trying to get to where I felt I needed to be before I was “allowed” to recover.

    This is why I advocate awareness of eating disorders at any size, and with any diagnosis. It breaks my heart how many people out there won’t seek the help they desperately need because they don’t fit into the media’s portrayal of an eating disorder or don’t have the “valid” diagnosis of bulimia or anorexia.

    • rheasofhope Says:

      It is like you’re reading my mind. I have had many of those same thoughts in regards to feeling like I am “making a mockery” of real eating disorders and feeling like I do not fit into the stereotype of how I should look or act as an eating disordered person.
      I have this blog as a platform for awareness and education on eating disorders for many of the same reasons you mentioned. I want other people with eating disorders (diagnosed or not) to understand that everyone needs, deserves and can get the treatment they need.
      Thank you for the advocacy you do and the education you are raising.
      Take care!

  4. Mandy Says:

    How awful that you were met with a therapist who belittled your feelings and symptoms. Gaining the courage to reach out and ask for help is difficult enough. I hope you were able to go back to that therapist and point his/her failures so that someone else doesn’t suffer the same way. I completely understand your feeling of not feeling sick enough to ask for help. For a long time, I almost felt discouraged that I couldn’t even do an eating disorder right. It wasn’t until I realized that I would advise a friend in my own situation to get help that I gave myself the space to do so. Thank you for sharing your journey. Speaking up is so very brave.

    • rheasofhope Says:

      Sadly, people who do not understand eating disorders are more prevalent than those who do. That is why it is essential to keep seeking the help you need if you feel you are not getting it in your current situation. At this point in my life, I have not spoken to this therapist (and have blocked her from my facebook; we used to be “friends”, how messed up is that?).
      I am glad that you were able to see that you needed additional help to follow the path of recovery. As you said, speaking up is so very brave…I want you to see yourself in the same way.
      Take care!

  5. You NOT fat, please stop! I think you’re beautiful, and i know what you’re going through! ❤ stay strong

    • rheasofhope Says:

      I only said that I was fat as that is the message I get from my eating disorder everyday and because, medically, my weight/height ratio says that I am. I was not doing it to whine, get attention or gain sympathy. I was merely writing that because of my weight, people have often discounted the fact that I have an eating disorder. Thank you for the compliment; Ed always tries to discount that.
      I hope you are able to see yourself as beautiful as well (because, guess what, you are!). Take care of yourself.

      • I know what you mean. Every day i look at myself in the mirror, all I can think is “you’re so fat, Emma! You should loose weight. Everyone must think that you’re disgusting.” And thank you so much, for the last sentences. I know it probably isn’t much for you to write it, but it was nice to read it.

      • rheasofhope Says:

        Remember, though, that that is not Emma talking to you…it’s your eating disorder. Emma is beautiful and loving and worthy of life. Your eating disorder is not; and it only wants to take those thing from you. You are NOT your eating disorder; you are so much more than that. Take care.

      • actually, I never really thought of it like that. Those words are really beautiful, and I just realized, that you’re right. I don’t have to look at my eating disorder like it’s “me”… It’s almost like it’s a devil, living inside me … I sound weird right now, don’t I? whatever. Thank you ❤

      • rheasofhope Says:

        no, not weird.
        An important tool in my recovery has been separating myself from the eating disorder.
        I would recommend the following books to understand the ED metaphor and separating from it:
        Life without Ed by Jenni Schaefer
        Telling Ed No by Cheryl Kerrigan
        and articles by Thom Rutledge (nutshellwisdom.com). Thom is my personal favorite…plus he was Cheryl and Jenni’s therapist.

      • Wow thank you, I will try to find these books!

      • rheasofhope Says:

        You’re welcome. I hope you find them as helpful to your recovery as I did for mine.

  6. Thank you so much for sharing this post (and beautiful photo!) with us. I love one of your closing lines: “You are worthy of a happy, healthy Ed-free life…” . Amen!

  7. jacksbed Says:

    I had a lot of anxiety about going to an OA meeting for the first time. I had just recently accepted my binge eating disorder and I thought for sure that they were going to tell me I was lying and didn’t belong there. The hardest part about that is that it would take away my hope for recovery and I decided that if they turned me away, I’d fail. It was terribly difficult to embrace what was supposedly this helpful support system when I viewed it with such a potentially detrimental impact.

    It wasn’t until I read your blog and experienced your eating disorder as a separate identity from your own that I realized how much I’d been allowing my own eating disorder to sabotage me. I had spent a lifetime listening to my eating disorder, believing the lies as truth, simply because that voice was louder than my own. I didn’t always *want* to believe the things I was saying to myself–about myself–but that voice is so loud! Now that I’m learning to separate out the eating disorder from myself, it’s easier to manage.

    Someone at an OA meeting told me she thinks about it like this: “the eating disorder is a disease…and you can’t blame a disease for trying”. So maybe from the diseases point of view, it’s not this evil thing being mean just to be mean. Maybe the eating disorder is scared and powerless and just fighting the good fight the only way it knows how. It allowed me to have some sympathy for that part of myself and I realized that if this eating disorder is within me and I possess the ability to have that much strength, I have the same amount of strength within myself to defeat it.

    I really love your blog. When I started mine, it was because I couldn’t find anyone I could relate to and feeling alone was making it impossible to start my recovery. You liked one of my posts and it led me to you and it helps immeasurably to find out I’m not alone in this after all. Thank you for being brave and posting about the hard things.

    • rheasofhope Says:

      Thank you Jack. I think the anxiety, doubt and shame are how the eating disorder stays in our lives. By causing us to feel everything you mentioned, the eating disorder lulls us into a false sense of security; telling us that they (the eating disorder) are the only one who understands us. But, there are many people out there fighting every day, just like you and me, for the recovery we all know we deserve…and can achieve.
      By learning the difference between the voice of the eating disorder and the voice of recovery, you will be able to practice more self-care, healthier self-perception and a better relationship with yourself and others.
      Take care.


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