RheasOfHope

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

When you are accused of making up an ED… February 4, 2013

“You know, you don’t have an eating disorder” she sighed assuredly–and with a hint of irritation–as she gently tapped her well-worn DSM-IV with her well manicured nails. I watched as it rested precariously on top of her pink and black yoga pants, which ended in her perfectly laced Nikes, while also hiding her perfectly toned thighs. She would, often times, wear her workout clothes to my session because she did not have time to change.

 

“I know” I said, absent-mindedly picking lint off of my paisley dress and pulling my cardigan tighter around my body. I secretly hated her for wearing workout clothes to my session. I did know one thing, though, I knew she was wrong.

 

“You don’t fit any of the criteria listed for Anorexia or Bulimia. Do I need to read them to you?” she asked with a tone of both sarcasm and pity; like I was pretending to have an eating disorder so I could sit in her office every Thursday afternoon of my senior year of college. Wrong. I had a lot of other things I would rather be doing  than sitting with her every week hearing lecture after lecture about how I do not “know myself”, and am subsequently “making myself have an eating disorder” because that is “just an avenue I’m trying out.”

 

“I know,” I said again; this time through clinched teeth. I forced myself to make the words come out evenly in tone despite the tears of anger that were welling in my eyes. I am not sure what stung more: the anger of being accused of faking an eating disorder or my anger at myself for allowing her to think she was right.

 

“So, what do you think is the REAL issue here?” she prodded as she took a sip of her Diet Coke, leaving coral lipstick prints on the straw.

 

“Honestly, the real issue is that you refuse take my concerns seriously,” I wanted to scream, but I ended up just shrugging my shoulders in defeat. Maybe I am making it up? Maybe I am imagining my symptoms? After all, I did not tell her about my purging, and, although I was restricting, I was still at a higher than normal weight. If she was not going to listen to my concerns, why would I want to tell her about my behaviors? So, I conceded to her false accusations. And, in doing so, I allowed ED a temporary victory as well.

 

I ended therapy with her believing I was making up my eating disorder as an affectation of sorts to hold me over “until I discovered who I really was”. I was, subsequently, lead to believe that I was eating like a “normal” person, with intermittent bouts of purging, restricting, overexercise, and laxative abuse. I still wonder why I let myself fall into the trap of believing she was right, and why I put off treatment for so long.

 

But that is not the important part. The important part is this, 1) why wasn’t she educated on ED-NOS (eating disorder not otherwise specified) and 2) I went to Lindner Center of HOPE, and got an actual diagnosis that lead me to the treatment I needed…despite what she wanted me to believe.

 

For those unfamiliar with ED-NOS, it is commonly thought to be the most diagnosed eating disorder in clinical settings. Additionally, despite what my former therapist tried to tell me, it is in the DSM-IV along with a list of certain behaviors it can encompass. However, it also states that there are other behaviors that would fall in the category of ED-NOS, but could not all be included in the DSM-IV. Including all ED-NOS behaviors would be far too exhaustive to put into writing, and may still not include all the possible behaviors due to the individuality of each person’s disordered eating. Essentially, in the easiest to understand language, ED-NOS consists of disordered eating patterns that meet some or most of the criteria for Anorexia Nervosa or Bulimia Nervosa but not all criteria are not met. Meaning, a person could have severely disordered eating but, because they don’t meet one or more of the criterion for Anorexia or Bulimia, they will not be able to receive a diagnosis of an eating disorder. This further results in this person not being able to get the treatment they need, get their insurance to pay for services required, as well as allowing the eating disordered person to think that his or her disordered eating is nothing to worry about (like I ended up doing before I received the treatment I needed). By not having a diagnosis of an eating disorder: sufferers miss out on necessary treatment that could save their lives, they miss out on medical testing that could prevent certain ED-caused/related conditions from getting worse, and it allows their eating disorder to continue dominating their lives.

 

Additionally, due to society’s misunderstanding of the complexity of behaviors and medical severity of ED-NOS, it is often not taken as seriously as the more well-known eating disorders of Anorexia and Bulimia. Medial professionals may not recognize the symptoms of ED-NOS, or may not understand that ED-NOS is just as life-threatening as Anorexia and Bulimia. Suffers of ED-NOS may not think they are “sick enough” to warrant treatment as they do not fall into the specific diagnosis of Anorexia or Bulimia; having a diagnosis of ED-NOS may seem like a non-issue. Thus allowing the eating disorder to flourish and steal their health. And, those sufferers who do understand that their eating patterns are disordered, may be steered away from treatment by people assuring them that they do not have an eating disorder or by those implying that ED-NOS is not serious.

 

I am here to tell you this, ALL disordered eating needs to be taken seriously both by people with the disordered eating and those medical professionals involved in their lives. Families and friends need to be aware of the multifaceted world of ED-NOS as well, so they are better able to support and encourage the recovery of their loved ones. Most of all, though, if you or someone you know is struggling with suspected or known eating disordered behavior, there is help available. The National Eating Disorders Association has a 24-hour confidential helpline, staffed by trained professionals, which can be accessed by caregivers, friends, family, medical professionals, and those individuals with eating disordered behavior. The helpline’s number is (800) 931-2237. However, if you would prefer an even more anonymous route, an instant messaging version of the helpline can be found at http://www.nationaleatingdisorders.org/information-referral-helpline. Furthermore their website (nationaleatingdisorders.org) offers many free and reliable resources on eating disorders that can be used at any time.

 

Remember, despite what society or ill-advised yet well-meaning medical professionals may say, you know your body better than anyone else. Stand up for yourself, your health and your recovery. You deserve to live eating disorder free. You are worth living a life of love, grace and joy. There is hope. There is help. Recovery is possible for EVERYone.

 

Jeremiah 29:11 “For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.”

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30 Responses to “When you are accused of making up an ED…”

  1. Kaity Says:

    Every time I read your words, I am 1) Unbelievably humbled by your writing (and subsequently a little ashamed of my own) and 2) So proud to call you my friend. You may not believe it, but you are one of the bravest people I’ve ever known. You are good, you are kind and you are going to make a world of difference to the girls (and boys) who are fighting their eating disorders just as you have.

    I love you ❤

  2. rheasofhope Says:

    Never be ashamed of your writing, Kaity. Your writing style is what makes you…you. You are a unique individual created by God, just like the rest of us. We all have our differences; which is what makes life fun.And, for the record, I love the way you write. It is honest and humble; just like you. Thank you for complimenting my writing. I am very insecure when it comes to putting my words out there because I fear that my words are not conveying what I intend them to. I, too, am proud to call you my friend. You have helped me through some very rough times both professionally and personally–I could not have done it without you. I love you as well and am disappointed I have to share you with your husband. 😉

  3. extendedrecovery Says:

    Thank you so much for sharing this. This is a tragically common experience people have. It has, as y

    • extendedrecovery Says:

      ou are aware, KILLED PEOPLE. You are so strong for fighting this. ❤

      • rheasofhope Says:

        You’re welcome. It is sad but true that eating disorders kill people every day, and that most of them go undiagnosed due to the person with the eating disorder not fitting every little criteria for a specific diagnosis. I am disheartened when I hear about the number of people who need treatment but are unable to receive it due to a small technicality in the DSM-IV. I hope to, one day, see everyone who needs treatment receive it no matter their diagnosis, stage of illness, level of recovery…whatever it be. Thank you for reading. Take care!

  4. What a great post…..I long ago ceased to fulfill the criteria for straight anorexia or bulimia. EDNOS is alive and well and should always be taken seriously.

    • rheasofhope Says:

      Agreed. I think that is the trouble with the DSM-IV. Those who have reached a point in recovery that they no longer classify as a specific eating disorder should still be able to receive treatment because they STILL have an eating disorder. Treatment should not be taken away simply because progress has been made in recovery; therefore making the diagnosis no longer fit the person. Treatment should always be available to everyone with an eating disorder no matter where they are with the disease. Thank you for understanding. Stay strong. Take care of yourself. 🙂

  5. April Says:

    As someone who has several people in their life with an ED or are recovering from an ED, I can say that I am amazed this person was even allowed to call themself a professional. I knew in high school as a child that ED’s are complex and not defined by stereotypes or a book for petes sake, and I did not have a degree. I am glad you found treatment and were not permanetly held back by one fool’s stupidity.

    I love you and am so proud of you every day. I don’t always comment but I ALWAYS read 🙂

    • rheasofhope Says:

      Thanks April. I’m glad you understand-even if you do not have a degree in psychology. haha. I, too, am discouraged that this person was in a position of power, and chose not to take my concerns seriously. However, you are right in that I am glad I continued insisting that I get the treatment I need. That is not often the case with others, though, I am afraid. You are also correct in that eating disorders should not be defined by stereotypes or limited to the description in the DSM-IV. Just as every individual is unique, so is every eating disorder. I think it is just human nature to try to classify people into tidy little boxes, but that just cannot ever work. And I am glad that cannot happen. The Lord made us all unique for a reason and wants us to remain that way. What kind of a world would it be if we could all be classified into little boxes that made us all the same?
      Love you too!

      • As a professional she had a responsibility to present herself to you in a way that was not triggering, as well. She missed the boat across the board. It really sounds to me as if she was dealing with her own issues (such as weight bigotry) as well. Not a good place for a professional to be in.

      • rheasofhope Says:

        Helena, I feel that my own issues with weight bigotry (against myself, not others) was a contributing factor towards why I went along with everything. I felt that I was “too fat” to be sick or “not sick enough because of my weight”…which led me to put off confronting the eating disorder head on. Fortunately, through lots of informational readings, I have learned that eating disorders can affect anyone; regardless of weight, age, gender, religion, sexual orientation, etc. ED-NOS, although very wide in its scope of behaviors, is a diagnosis that is not only misunderstood by the general public, but by those who live with it. Thank you for reading. Take care!

  6. Very enlightening and interesting read. I had no clue and am disappointed in this professional I am so glad you found the road to discovery. I think about you daily and miss you just as much.

    • rheasofhope Says:

      Thank you. I have no ill will against this professional, and do not wish to upset them. I am just stating an experience. This person may be a wonderful counselor…just not for me. Therapists are like good jeans; you have to try on a lot of them before you find the one that fits you best. I am just glad I realized I needed additional help and sought it out. I miss you a ton!

  7. It amazes (and disgusts) me sometimes the things people tell those with eating disorders. I was told by a friend once that I didn’t really have an eating disorder, I was just trying to get attention. This was at a time when my life consisted of getting off work and spending the rest of the day binging and purging.

    Once, when I went to see a new therapist, we were discussing my purging and she was trying to convince me that purging just wasn’t worth it because clearly, for weight loss purposes, it wasn’t working for me. I wanted to slap her.

    It really is sad, though, how often ED-NOS is discounted. One of my closest friends suffers from ED-NOS, at it’s such a difficult battle for her. I think it’s made worse by the fact that it’s not even always entirely accepted by the ED community. I’m “lucky” in that I fit into the criteria for bulimia, because I truly believe if I had been told I had ED-NOS, it would have just further fueled my desire to destroy myself, because I would have seen it as “not being good enough” at my own illness.

    • rheasofhope Says:

      It is hard to believe what some people say without thinking. I am trying to learn to not take things so personally; to do what is best for my recovery. I am sorry to hear you had that experience, but am glad it did not stop your mission towards recovery. Take care!

    • Lyrics, I have had those same feelings as you describe in your last sentence. I’ve had the “I can’t even have an eating disorder right!” thoughts. They hurt me so much.

  8. melluann Says:

    Love this post and the resource! Good work

  9. loveletters Says:

    Ugh. As a grad student training to be a therapist, your therapist seemed so incompetent and condescending! She clearly did NOT understand the DSM in terms of eating disorder diagnoses. Glad you got the help you needed:)

    • rheasofhope Says:

      I do not think she understood it either and she is still in the field…that kind of terrifies me. I am go glad that you are going to be a therapist. I am sure you will be a light in the life of many. Thanks!

      • loveletters Says:

        Unfortunately, I know this tends to be a common phenomenon. But ANY sign of disordered behavior around eating, body image, exercise needs to be taken very seriously…whether it meets diagnosable criteria or not. The only explanation I can come up with is that she was under insurance reimbursement, and I know coverage is not always available for EDNOS diagnoses, which to me, is absolutely tragic, seeing as that is the most prevalent (if not lethal) eating disorder! The new DSM-V should be coming out this spring and there are a lot of proposed changes, so that should be interesting. Thank you so much 🙂 I am so excited to become a therapist…it truly is my calling 🙂 Kind words like yours make my day!

      • rheasofhope Says:

        The sad thing is, the was a counselor at my college…so insurance was not a factor her for treatment of me. A diagnosis would not have affected her pay in any way. I agree that, for the doctors who do rely on insurance reimbursement, it is appalling that EDNOS is not covered in all situations. I hate that, by having a diagnosis of EDNOS, insurance companies, doctors, family members, etc all think that those of us with the disease are lesser than or not as sick as those with diagnosable EDs. I am glad that you are working to spread the knowledge on EDs with those you meet, your future clients and their families and anyone else who reads your blog. Take care!

  10. Anonymous Says:

    So you lied (through omission) to your therapist and got an incorrect diagnosis?
    “After all, I did not tell her about my purging, and, although I was restricting, I was still at a higher than normal weight. If she was not going to listen to my concerns, why would I want to tell her about my behaviors?”

    Perhaps if you had been honest about all your behaviours she could have diagnosed you correctly?

    Therapists listen all the time to patient’s ‘concerns’. But they have to base their diagnoses on the patients actions and behaviours. If you lie about your actions, don’t expect a good diagnosis.

    Next time go in, talk about your actions – all of them – and them, perhaps, talk about your concerns,

    • rheasofhope Says:

      When I think of it like that, then, yes, perhaps it was lying. I did not purge or self-harm when I started therapy with her with my concerns of an eating disorder. However, at that point, I was already told I did not have an eating disorder; not to mention feeling judged. In my warped ED mind, I felt that if she was already under the impression that I did not have an eating disorder, I felt that disclosing my purging would not change the matter. Fortunately, when I went to Lindner, I realized just how valuable it was to disclose every ounce of information. I now have a therapist who I am not afraid to tell my behaviors, thoughts and feelings to. I no longer feel judged or patronized. I guess, in the end, everything is a learning experience. Had I not had that experience with that therapist I would not have known what I wanted out of the next one. So, in that regard, I very much appreciate what I learned in that situation.

    • MandytheFriendy Says:

      I think it’s easy for anyone to say, “Well of course you weren’t diagnosed correctly because you should have done X, Y, Z.”

      But part of any trained therapist’s job is to be able to 1. gain the trust of their client, 2. recognize behaviors that may be taking place due to someone’s uncomfortableness with a topic area, and finally, 3. allow the client to take their own journey of self-discovery without stepping in the way…they can’t hand hold the entire time, if they did that, the client/person would not have a chance to figure things out for themselves (which, let’s be honest, is really the most therapeutic thing that could happen). They act as a guide, if you will.

      No therapist ever really knows someone’s “full story,” because, well, nobody can know that except the person. As experts in the field, I don’t think any therapist just automatically assumes their clients (who may be seeing them due to body/self issues) are going to be super open and honest right away about their feelings, behaviors, and thoughts…I don’t think most people would ever divulge that information to anyone right away.

      If anything, this blog post proves to me that there is a serious lack of understanding about the world of EDs, and society has to understand that EDs do not fit into one, particular stereotype. Once again, blaming the person WITH the ED for their own misdiagnosis does nothing except fuel the (incorrectly assumed) fire that that particular person is fully capable of understanding their own behaviors…like they have a choice in how they think/feel about this topic. What really needs to happen is that people (therapists, you, me, etc.) need to become more educated about the inner-workings of an ED and what those inner-workings do to a person’s psyche, self-esteem and ability/willigness to fully understand, comprehend and share their feelings about the matter.

      Reply

      • rheasofhope Says:

        Thank you for understanding, or at least trying to gain an understanding by learning more about the complicated world of EDs. The problem with this disease is that people who have it often try to hide their symptoms by lying, omission or hiding their behaviors in effort to keep the disease quiet. This happens for a myriad of reasons: from trying to protect others in their life from being effected by their behavior, wanting to keep the disease for themselves, wanting the disease to continue uninterrupted, not wanting people to be inconvenienced by their illness, wanting to be a people pleaser, wanting to be seen as perfect (a big one for me) and SO much more. I kept a lot of my behaviors secret because of the judgment I received from this therapist, not wanting my friends to know how sick I was, not wanting others to have to take care of me, and because ED told me that I needed to keep her in my life. That is why EDs are so complex and secretive; they involve many thoughts, behaviors and actions that are only known to those with the disease. I cannot count how many talks we had about why I do what I do, how many times I would obsessively clean our apartment to avoid engaging in ED behaviors or why I eat my sandwiches with forks/tear my food in to tiny pieces to eat it. The point is this, we HAD those conversations. By having these conversations, you became more enlightened to what it is like to have and deal with an ED. You wanted to learn, to help, to be a friend in a time when ED did not want you to do any of those things for me. Instead of blaming me or condemning me for having and ED, we worked together to get educated on them, on recovery, and how to remain friends despite a disease that wanted none of that. I appreciate that about you; well, that and so much more, but now is not the time to put all that in writing. I thank you for wanting to learn and gain information on EDs to better understand what is going on in my ED brain, even when I cannot find the words to verbalize it to you…or anyone for that matter–including myself. Thank you for not assuming I engaged in certain behaviors because of some perceived thought or triggering event. Thank you for remaining strong with me as I continue on this long winding path to recovery. Thank you for speaking out for EDs as well. Because EDs are so shrouded in secrecy, they do not get the necessary level of awareness of other diseases. However, EDs are serious diseases that are unfairly discriminated against, made the butt of jokes, misunderstood, misinterpreted, and generally unknown to most people (even those in the ED community). The NEDA website (www.nationaleatingdisorders.org) has a lot of really phenomenal resources that help to educate on the wide nature of EDs.

  11. fredphillips Says:

    A very courageous post rheasofhope. I think ED, like all other disorders and suffering have a lot to do with how we feel about ourselves. My daughter had a 7 year ED that started when a friend jokingly called her at fat bum. I wish I had known then what I know now about raising children to feel good about themselves. It might have been a different experience. Thank you for liking my blog. Cheers!

    • rheasofhope Says:

      Thank you Fred. I agree that EDs are largely influenced by feelings and emotions. There’s no way you could have predicted your daughter’s reaction to a friend’s “joke”; so please do not feel guilt in the way you raised her. You did what you felt was best. I’m sure she is a wonderful daughter and that you love her very much. Take care.


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