Feeling Anorexic, Being ‘Not Otherwise Specified’


Written and Researched by Cecilia, LSBU.
When I was 17, I was given an EDNOS diagnosis. My weight was low (ish) but not low enough to be classed as underweight. I was also still having my periods (joy) so, according to the DSM, I had EDNOS or what would now be called ‘OSFED. Atypical Anorexia’[1] (doesn’t really roll off the tongue, does it?).
Looking back, the reasons for my diagnosis and the way I interpreted ‘having’ EDNOS impacted massively on how I evaluated not only my problem, but also myself, and I have since wondered whether I was just being oversensitive and overly analytical or whether others had felt the same. In order to find out, I conducted research on the effects and interpretation of an EDNOS diagnosis and, as it turns out, they have. Big time. (See Beat’s research page for a summary of my findings).
The seven girls I interviewed all described being disappointed and confused by their EDNOS diagnosis. Being ‘unspecifiable’ just told them what they were not - not anorexic, not bulimic. They don’t fit neatly into a pre-defined diagnostic category. They didn’t ‘meet the criteria’ for AN/BN. They were something other, something unspecifiable.
But how can you really have something that is ‘unspecified’? Surely what an NOS diagnosis is really describing is an absence and there are two problems with this (albeit implicitly) negatively framed message.
Firstly, it isolates the disordered eater, making them feel indefinable, abnormal, untreatable even. Secondly though, for someone acutely aware of failure, you can see how this wording would be an issue. For me, ‘not meeting the criteria’ was clinical jargon for not being a low enough weight. Now, I was acutely aware of my failure to lose X amount or restrict X amount – the ED never let me forget it. So, as you can imagine, having this criticism clinically reinforced wasn’t ideal. I felt ashamed and exposed. If I wasn’t underweight, were they just giving me an arbitrary diagnosis to humour me?
For many participants, EDNOS failed to represent how disordered and distressed they felt, which left them feeling incongruent. Many of them described still feeling anorexic despite being told they had EDNOS, which made them feel ashamed and confused. On a mental level then, the distress a person with EDNOS finds themselves in can be serious enough for them to relate to or feel like anyone with AN, so you can see how not having this conferred in a diagnosis could be frustrating.
Many of the girls also believed that because EDNOS was relatively unknown, it wouldn’t be taken seriously. I felt hugely embarrassed having to explain my diagnosis. Unlike other diagnostic acronyms (OCD or ME, for example) EDNOS had no explanatory power. Having to say “E-D-N-O-S…it stands for…it’s a bit like anorexia, but different…” felt like something I was just making up. Did I even have an ED?! Explaining EDNOS made me feel as though I had to convince people that I had an actual disorder and not just a faddy attitude to food because, despite looking normal, this was what the doctors had told me. Feeling like this sometimes resulted in me continuing to display ED behaviours around other people even on days where I felt a bit happier. Looking ‘normal’ meant that my ED behaviours were the only visible symbol of my unhappiness and I feared that stopping them would result in people forgetting about my distress, which isolated me further, hindering my recovery. The healthy part of me obviously didn’t want to have a disorder, so having to live up to my diagnosis (despite its ‘mildness’) or be more overtly ‘eating disordered’, made me feel incongruent, fraudulent even, when all I wanted to do was have my unhappiness acknowledged and then become free of the ED.
But why did I (and so many of my participants) react like this? Our ED was very real to us and it had obviously reached a level critical enough to put us in treatment – so why would we start to doubt it, think we were overreacting, or fear being abandoned in our distress?
Well, firstly, our fears regarding other people’s reactions did sometimes become reality (many of the girls described being met with blank stares and confusion when they said they had EDNOS). However, it was the importance we placed on the visibility of our ED that also fuelled this reaction. I believed that if I had an ED, it should be obvious to others. My distress shouldn’t need explaining[2] - the ED was supposed to do that for me! But if the only way it could do this was through my physical appearance, then I was now stuck in the depressing no-mans land of clinically having an ED but not looking like I had an ED, and when one’s preconceived ideas of what an eating disorder looks like conjure images of physical emaciation and malnourishment, looking ‘normal’ can make you feel like a fraud, like you’re not really ill. Being ill therefore became intrinsically linked to looking ill and, most importantly therefore, being a cause for concern.
Of course, this didn’t mean that I wanted to be anorexic. I didn’t wake up one day and decide that I wanted to have anorexia, the illness, but I still felt ill and unhappy enough in my head to want my problem represented in an AN diagnosis, and I think there is a difference.
Orbach (1978) notes how an ED often develops as a way to communicate something that we are unable to articulate directly. By having to explain my diagnosis, EDNOS forced me (and my participants) to articulate something verbally that I was desperately trying and failing to communicate through my body, and having to do this reinforced how normal (i.e. healthy) I looked, despite feeling quite the opposite.
EDNOS made me feel as though I had failed at having an ED because I hadn’t ‘achieved’ enough weight loss (didn’t they think I already knew this? You can never be thin enough, remember…), which triggered a whole new pursuit for weight loss, a pursuit to ‘qualify’ for AN (which, looking back, I didn’t ‘succeed’ particularly well at, luckily!). There is something clearly wrong with a diagnostic system that makes us feel the need to ‘try harder’ or lose more weight in order to be taken seriously or given a ‘more serious’ diagnosis. Worryingly though, some of the girls I spoke to also described how not feeling ill or thin enough triggered these feelings in them too, causing them to fall deeper into the ED and lose more weight to ‘qualify’.
Both my experience and the experiences described by my participants show that being diagnosed with EDNOS, its connotations of mildness, the way in which a diagnosis is communicated to someone, and one’s insecurities about not looking how you feel, all play a huge role in the maintenance and exacerbation of an ED, and these problems need to be addressed by clinicians and mental health services.
While part of me knew that there was obviously a level of concern for my welfare from clinicians and those close to me, the associations I had made between the EDNOS diagnosis and what it represented spoke louder, hindering my recovery. I didn’t feel ill enough to recover and didn’t really know what recovery meant for someone like me (except possibly what I believed to be unnecessary weight gain and, therefore, further distress). However, despite all this, I embarked on an 18-month outpatient treatment programme for my ‘not otherwise specified’ ED - whatever that was! - and really did receive some excellent help from my therapist and those around me. In 2009, I was discharged, feeling happier, but I have never been able shake the resentment and frustration I felt from ‘only having’ EDNOS. Turns out I wasn’t the only one.
Cecilia, LSBU
If any of this resonates with you and you would like to share your experiences, I would love to hear them. Please get in touch with Free Me who will pass on your details
References
APA. (2013). Highlights of Changes from DSM-IV-TR to DSM-5. Retrieved September 22, 2015 http://www.dsm5.org/Documents/changes%20from%20dsm-iv-tr%20to%20dsm-5.pdf
Orbach, S. (1978). Fat is a Feminine Issue: the anti-diet guide to permanent weight loss. New York: Paddington Press.
[1] Following publication of DSM-5 in 2013, major changes were made to the thresholds, classification, and criteria for ED diagnosis, especially with regard to EDNOS. Menstruation, for example, was removed due, in part, to the increase in male EDs. In addition, a number of new EDNOS sub-categories were created (e.g. sub-threshold bulimia, atypical anorexia) to distinguish one EDNOS sufferer from the next. For more information on changes made to ED diagnosis in DSM-5, see the DSM website: http://www.dsm5.org/Documents/changes%20from%20dsm-iv-tr%20to%20dsm-5.pdf (page 12).
 
[2] Interestingly, one of my participants who had first been diagnosed as anorexic and then ‘downgraded’ to EDNOS described how when she was anorexic “people knew, you could basically tell [she] was anorexic”, which indicates that it isn’t just the EDNOS ‘purebreds’ who feel like this, but those of us who move between diagnoses too.

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