ED-NOS?

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Fighter89
ED-NOS?

I was diagnosed with anorexia as a teenager, and have recovered/relapsed several times since. I have several other non-related health issues, and two weeks ago, I flew across the country to see several specialists. They finally arrived at a diagnosis (actually four of them), which was really bitter sweet. The last two years I've seen so many doctors and they all told me my bloodwork was only abnormal because of the eating disorder, and that otherwise I was fine. I knew it wasn't true. I had too many symptoms NOT related to the eating disorder, so these diagnoses finally validated my concerns. Unfortunately, two of the diseases are incurable, and pretty devastating, so it's another hurdle to handle...

,,,but that isn't what bothers me, Well, I mean it bothers me greatly (obviously), but I'm more worked up over the change in eating disorder status. I'm clinically underweight, restricting calories, and purging under pressure. I'm consumed with weight and food and I cannot eat with other people (aside from my children) without feeling like a ticking time bomb. I'm on several vitamins and supplements because I know I'm not getting adequate nutrition. So, on a limb, I tell the new doctor the entire truth. She orders blood work. Labs come back normal, as I knew they would because I've traveled this road over and over. And because these labs are "normal" and I'm only slightly underweight, she advises I'm no longer "anorexic," but rather suffering from an eating disorder, not otherwise specified.

I guess I should be relieved that my body isn't as medically devastated by all this as my emotions are? Somehow, weirdly, it still feels like a slap. It feels like what she really said is, "All those reasons that drove you to this point don't matter. You're not "sick enough" to have an eating disorder of any value, but because you're telling me you're sick, I'll appease you by writing ED-NOS on your medical forms." It felt like she invalidated everything I had just told her.

Some part of me thinks I should take it as a compliment. Maybe this is indicative of improvement. I mean, after all, if a doctor isn't calling it anorexia, maybe this is just recovery in disguise. Maybe it isn't relapse. Maybe its just rough waters. Maybe I can discontinue therapy. Maybe I try and put together all the pieces, raise my family, simultaneously deal with life-changing, debilitating diseases and just warrior through like none of it is significant. Maybe I should quit treating myself as fragile, and join the real world who deals with catastrophes everyday.

And if my weight happens to bottom out along the way, at least I can tell people around me that it isn't anorexia.

Cosmia
Fighter89,

I'm so sorry that you're going through such a tough time with your health! I can understand how being given the diagnosis of ED-NOS can make you feel like your struggles are being minimized or not fully acknowledged. However, there are many individuals on this forum who will tell you that their ED-NOS diagnoses reflect just as much pain and suffering as another's diagnosis of anorexia. EDs are all unique to the individual and it's not useful to ascribe yourself any sort of new identity based on the evaluation of a single doctor. I encourage you to continue to reach out on the forums as there are definitely many others who have been given ED-NOS diagnoses and have experienced similarly mixed emotions regarding them.

I really hope you get well soon, both in terms of your ED and your general health!

-Michelle

1fishygal68
Good Luck and Best Wishes in Your ED Recovery

Take care of yourself.

Adage
Brave

Thank you for sharing with us Fighter89. It takes a lot of courage to be able to open yourself up like this. I understand where you're coming from with feeling somewhat invalidated. I've struggled with depression for 10 years. And for a long time I was hung up on never getting an 'official diagnosis' - even though I took two different antidepressants. I'm still dealing with the symptoms but I feel as though I've come to terms with the fact that I may never get an 'official diagnosis'. I do therapy and inform my closest friends that I'm dealing with symptoms of depression (that way, they know why I might be feeling down or have to skip out on some social occasions).
You know yourself the best, and your doctor at least still recognizes that you're dealing with an ED. Your feelings and experiences are valid and no one can take that from you Fighter89. We're here for you.

Adage

mel2016
Hi

Hi Fighter89,

I think I understand your feelings and how it somehow feels better to have an actual diagnosis even if it would mean your condition is more severe. It serves as a statement of how you're doing and how seriously other people are taking your condition... however, deep down you know you would rather be healthier. It's definitely still a big deal, both from a medical and a psychological perspective though! Does your therapist at least validate your concerns? Do you think it's helping? I'm so sorry you are going through this, I hope this does mean that you are getting better in some respects, but it still sounds like you are suffering a great deal. I wish I could do more to help!!

Stay strong,
-Mel

1fishygal68
Good Luck in Your Recovery

I think I suffer Ed_Nos 2. Its difficult though because my docs never gave me a formal title of that but i know the truth is out there.