The black sheep of the family: EDNOS

Before I went into treatment I had to go to the doctor so they could record my vitals and do an EKG.  The doctor had to fill out some additional paperwork and this is what happened:

Doctor: Do you struggle with bulimia or anorexia?

Me: Oh...um...I have EDNOS.

Doctor: What's that?

Me: ...um...Eating Disorder Not Otherwise Specified.

And then I went into an explanation as to what this disorder is as she stared at me blankly.  My heart sank.  I already feel like the black sheep when it comes to eating disorders, but for a doctor to not even know its existence furthered my belief that EDNOS gets the short end of the stick.

You see, there are two pretty, colorful, glittery boxes called Anorexia and Bulimia.  These are the disorders that you hear the most about.  I couldn't fit into either of those boxes, I wasn't special enough.  Instead I was thrown into the very big ugly dumpster called EDNOS (now called OSFED or Other Specified Feeding or Eating Disorder thanks to the DSM V).

You may think my description is a bit dramatic, but this is how I truly view the different diagnoses.  

EDNOS is diagnosed by what it's not.  It's basically a catch-all.

I don't fit the criteria for anorexia because I'm at a normal weight.  Thankfully the new DSM changed one criterion that always bothered me.  Before I also wouldn't have qualified because I am still getting my period, but now people who are at a low weight, still menstruate and fit the other criteria can be diagnosed with anorexia.

I don't fit the criteria for bulimia because I don't binge and purge on a frequent basis.  I have binged before, but every person's binge is different.  For bulimia a binge means consuming large quantities of food, which I have not done.  I have purged, but mostly it's after eating a normal or less sized portion of food.

Another type of eating disorder is Binge Eating Disorder, which wasn't listed as a diagnosis until DSM V.  Before this, binge eating disorder was sitting in EDNOS' dumpster.  I am very glad to see the progress within the new DSM.

And that just leaves me.  It doesn't make sense, but I wish I was anorexic.  For me, it was the coveted disorder because it meant I had willpower and was strong.  (Side note: please don't confuse this with me actually wanting to be sick or choosing to have an eating disorder.  Once I was in ED's world he would throw the anorexia carrot in my face so I would keep moving forward, promising me I could achieve it if I worked hard enough.). Anorexia also shows on the outside that you are sick...and me?  I don't look sick.  I look healthy and normal.  I did all this "work" and I have nothing to show for it.  Because I don't look "the part" I feel like I don't deserve help, that I'm not even worthy of being diagnosed with an eating disorder.

When society thinks "eating disorder" and aren't well informed on this mental illness, they most likely will visualize a young white female who is emaciated.  But this isn't a real picture at all.  People with eating disorders can be any shape and size, male and female and come from any background.  What we have in common are the thoughts and feelings we have about food and our bodies.  What we have in common is we all deserve help.  I still struggle with the idea of deserving help, but really...that's just ED playing another trick.

Regardless of all the labels we all are fighting for our lives and hopefully others are as lucky as I am to have such an amazing support team.

In the near future I hope I can let go of how I view my diagnosis and not worry about labels and glittery boxes.

"I'm fine"

Yesterday marked the start of eating disorder awareness week and I want to address various topics that hit home for me and might resonate with others as well.

Last night I socialized in a group setting for the first time since I was admitted into treatment (and maybe even before then because I was isolating).  People now know what's going on if they have Facebook and read my blog.  I was rather anxious last night before I arrived at the theatre to help with costumes.  I didn't know what to expect or what people would be thinking or what they would say.

I received hugs and that made me feel good.

People asked, how are you?

My reply, I'm...okay...

Usually my fallback response is I'm fine.  While in treatment I learned I wasn't the only one having troubles figuring out how I felt.  If you asked me right this second how I am and I answer honestly my response would be I don't know.

I really don't know.  Sometimes I'll throw in I'm a little tired or I'm good.  I want to appear normal.  There are many times I will appear happy and giggly and laugh and smile, but I don't even know if I'm happy.  Most likely I'm burning off my anxious energy.  I'm playing the role of the good friend, the obedient daughter, the helpful acquaintance, etc.  I can't let anyone know that I am having a bad day or that my life isn't perfect because something terrible will happen and I don't even know what that terrible something is.

I don't believe my thoughts, feelings and problems matter.  Do other peoples' thoughts, feelings, and problems matter?  Yes.  Even my accomplishments I don't like sharing because it seems odd, conceited, and selfish.  If one of my friends or family members had something to share whether it was positive or negative, I'd drop everything and pay attention to them because they matter.

If someone is having a hard time I want to fix it and sometimes fixing it means restricting or purging or using self harm.  Does that make logical sense?  No...but for some reason it makes sense to me.  There are plenty of situations that I don't have any control over, but by manipulating my food intake and focusing on being thin somehow I am in control.

I believe that losing weight will control how people see me.  By being thin people will love me, respect me, want to be my friend, think I'm beautiful, smart, funny, and talented.  I would feel confident and everything would fall into place.  ED says this is the only way, once I starve enough and lose enough weight THEN I am deserving of friends, of love, of acceptance, of anything really.  I don't know how I became the exception and why everyone matters besides me.  It just seems like a fact of life.

So next time you ask how I am and I say I'm fine or I'm okay, mostly likely I have no clue.