What Is EDNOS?

Ana, Mia… Some of us know immediately, what I’m talking about, when these names come up. They are code words for the eating disorders anorexia and bulimia. But there’s a third sibling, a less famous one, in the family too: Ellie, also known as EDNOS. Who is she and why is she so dangerous?

In general, it is dangerous to give the disorders names, as that makes them seem more human. Sufferers could feel as if the sickness becomes a friend. On the other hand, it’s easier for people in recovery to address the voices in their head. It’s like having a clear enemy to fight.

EDNOS is the abbreviation for “Eating Disorder Not Otherwise Specified”. It is literally the diagnosis for everyone who has an eating disorder but doesn’t meet the criteria for a specific one. The name alone seems very vague and very harmless.

The EDNOS Take Over

When I first started restricting, I was 15 years old with horrible body image. I started to lose weight quite slowly. I wasn’t counting calories or tracking my food, nor was I exercising obsessively. No one even noticed the slow but steady changes in my behavior. At first, I thought, I was simply eating “healthier”. Even as a child, I never liked chocolate or most of the other sweets and due to my upbringing, I barely snacked anyway. However, I slowly developed panic and fear, when it came to these “unhealthy” foods. When I started going running more often, everyone was happy and cheered me on.

Without me – or anyone, really – noticing, the disorder started to take over. It all began with me skipping lunch. Later, I decreased my breakfast to half a slice of bread. I couldn’t avoid dinner, as my whole family was there, but I tried to stuff myself with low calorie foods. I obsessively tracked everything I put into me, making sure I drank tons of water along with it. The running and exercise overall became torture and I felt horribly guilty for missing a work-out. Soon, I started to lie about how much sport I did and I kept telling everyone, that I wasn’t hungry yet or, that I had already eaten. Suddenly, nothing mattered anymore except for food, exercise and weight. The whole day long, these thoughts occupied me, my body image occupied me and EDNOS occupied me. They even kept me from sleeping at night, as I repeatedly calculated and recalculated the calories of the day (even though I ate the same things every day) and planned and re-planned the next.

It IS A Big Deal

Despite all these sick behaviors and damaging thought patterns, I refused to get help. I knew, I had a problem, so I started researching on the internet. I almost met all criteria for anorexia but couldn’t get it into my head, that I was anorexic. I didn’t feel sick enough. In my eyes, the disorder wasn’t serious. I self-diagnosed and came to the conclusion, I “only” had EDNOS.

EDNOS – it doesn’t feel real. It’s like this disorder doesn’t justify getting help. It feels fake. And that exactly is the danger and most powerful weapon of the disorder: denial. The monster in your head keeps telling you, you don’t need and definitely don’t deserve help. It makes you believe all your doubts and fears are ridiculous.

I didn’t go into treatment and suffered for almost an entire year until my BMI was so low and my health so poor, my parents considered to hospitalize me. And I’m only one of thousands of boys and girls, men and women, who underestimated the danger of EDNOS. Some of them weren’t as lucky as me and they kept believing the lies of the voice inside their head. A lot of sufferers die, either from the consequences of the physical damage or from suicide.

By the time, I was diagnosed with anorexia nervosa – in my eyes, a “real” sickness – I wasn’t only severely underweight, didn’t have a period, was constantly cold, had damaged organs and lots of other horrible physical side effects of the disorder, but I also suffered from depression and was suicidal. I even self-harmed. Why is it, that I had to go down the path until it was almost too late, till I finally felt “sick enough”?

Coming To Terms

Looking back now, as I’m – thank God – recovered, I am very angry. I am angry at my former self for letting myself fall so deep. I am angry at the people around me for not reaching out and intervening a lot earlier. I am angry at the society for not raising more awareness for the deadliest mental illness and also for imposing this poor body image that I had. But I am most angry at Ellie for making me believe, I am not worthy of getting help.

The take-home-point is that we all still have a lot to learn about mental illnesses, especially eating disorders. We need to understand that weight or BMI alone shouldn’t characterize the severity of this kind of sickness. It is important to understand that there is more than simply anorexia and bulimia, that there are various other forms, such as orthorexia, binge eating disorder or EDNOS. Just because they might be less known, doesn’t mean, they are less dangerous. We need to spread the knowledge and give sufferers a helping hand. No one should believe that they are alone in their fight. Nobody should ever get the feeling that their problems are too small to be relevant.

So, is being diagnosed with EDNOS a death sentence? For me, it wasn’t. But for many other people, sadly, it was, still is, but doesn’t have to be. 

Author: Anna Liu Twitter: @ednosFIGHTER

Photo by: echeion

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