EDNOS (a.k.a. Not Sick Enough)

photo-1531928351158-2f736078e0a1What happens to someone who hasn’t eaten or taken in fluids for over three days? What happens when it becomes almost traumatizing to chew solid food? More importantly, what happens when someone who doesn’t fit the criteria for anorexia seeks medical and clinical support? Absolutely nothing.  Sure, she may be admitted to the hospital for observation for a couple of days – and reminded that “we need to eat and drink to stay alive” but in the end, she isn’t thin enough for treatment, and gets released….despite only eating a few crackers during her stay. True story.

As a counsellor working with people struggling with eating disorders, I had the learning experience of my career last month when one of my clients needed immediate medical attention. After a short debate in session, we left for the ER together and, after 8 hours she was admitted, for what I believed, observation. Over the next five days she was diagnosed with Anorexia Not Otherwise Specified (while she was consistently reminded to eat and drink – like she just forgot and the reminder would snap her out of it). images (1)

An eating disorder not otherwise specified or “EDNOS” is another way of saying the eating disorder you have doesn’t fit the criteria or check all the boxes.  In my client’s case, because she has a higher BMI – despite not eating or drinking, she has anorexia but without the emaciation.  Sadly, because of her weight, she wasn’t able to get the treatment she desperately needed.  At the same time, she was reminded by one nurse that being thin feels pretty good and “she’ll get there”, while another noted that her weight wasn’t an issue at this time…and the weight list for outpatient “treatment” was over 3 months long.  I was struck by this….since when does weight have anything to do with it? I mean, the last time I checked, we needed water to live….right? And then I remembered (and it felt like a knife through the stomach), our medical system lives and breathes by the almighty body mass index (BMI).

As it relates to eating disorder support and “treatment”, weight is the only issue and the most important issue to get medical treatment. Unless you are at death’s door (a.k.a. really really thin), you are on the weight list for outpatient care that could take months.  In my client’s case, as long as she continues to drink and eat almost nothing, she may not have months. So what does a family or a friend do in a desperate situation such as this? What can I do as a counsellor?  The tricky thing about anorexia is therapy won’t do a thing if the client – in the midst of starvation – can’t focus or isn’t cognitively present. If she is in pain or slipping in and out of awareness, there isn’t a lot we can do together.

photo-1501770118606-b1d640526693Establishing a caring support network is crucial but that support network must also be aware of the nuances of anorexia.  Like any addiction, anorexia is a sly beast that takes one hostage when no one is looking.  It’s harsh and angry and ready for a fight. It shows up when those supports leave for work or have to take care of others.  Moreover, it is one thing to be suffering from this eating disorder and have the fortune of living with parents who are able and willing to fight anorexia, but what if you are an adult or living without the support of parents? What if you are living alone without a social support network to check in or supervise meal times? Your screwed…that’s what you are…but your eating disorder is jumping up and down.

The reality of this lack of medical attention, understanding, and empathy scares and disturbs me. It is what is keeping me up at night.  I think about my client in between sessions and hope she has the right kinds of support she needs. She wants desperately to get well, to go to school, to have a life…and she deserves that.  She is losing more and more weight every day and it won’t be long before she does fit every box for anorexia…and what then? Could this not be prevented if she got the care now?

My client and I witnessed the ignorance of medical professionals from the nurses up to the psychiatrist; the lack of patience, empathy, and understanding was re-traumatizing for her.  As sad as it is, it isn’t their fault if the system is toxic and uneducated. How much attention is placed on trauma informed medical care or in understanding what an eating disorder is?  The information that they do receive is most likely biased, antiquated, and weighed down by moral judgements wrapped up in “best practice”.  In short, it needs desperately to change if we are going to help people like my client.

…and I have a few ideas how.

K

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