"Atypical"

*Apologies...post contains some swearing in quotes*

An atypical eating disorder. Otherwise known as EDNOS. It can be just as life threatening as anorexia without any of the "glory" bestowed upon those with the "self control" to starve themselves.

Looking over an old personal journal, I have picked out the following. The posts are over a year old but are far more articulate than I can be at the moment...

I hate this no-mans-land. This week I've been a "bulimic", last week I tended more to "anorexia" but I'm obviously not very good at either and I totally fail at "healthy".

Many patients who do not meet full criteria for these diseases are nevertheless quite ill, and the diagnosis they now receive, “Eating Disorder Not Otherwise Specified,” may delay their ability to get treatment.


“It is a bit misleading to patients — it can make them feel like they don’t have a real eating disorder,”


60 percent of EDNOS patients met medical criteria for hospitalization and this group was, on average, sicker than patients diagnosed with full-blown bulimia. “People were initially just patting them on the back for their weight loss,” Peebles said. “It often took months or years for others to realize that what they were doing didn’t seem healthy.” Despite their normal body weights, this group was in some ways worse off than underweight patients diagnosed with anorexia, she added. “They manifested criteria of severe malnutrition.”


Many who struggle in the EDNOS category are at risk for the same dangers as those who meet criteria for other disorders, including the risk of heart attacks, dehydration, electrolyte imbalance and even death.


Mortality rates for other eating disorders (bulimia, EDNOS ) are essentially equal to those of anorexia.


"EDNOS is a hodgepodge of things that don’t necessarily belong together, except that they don’t belong anywhere else."


“I’ve had many patients feel that they need to lose more weight so they lose their period so they can change the diagnosis. Patients really feel they have to get ‘better’ at their eating disorder to deserve treatment.”


Individuals with eating disorder not otherwise specified, which is sometimes viewed as a "less severe" eating disorder, had elevated mortality risks, similar to those found in anorexia nervosa. This study also demonstrated an increased risk of suicide across eating disorder diagnoses.


I relate to all of the above. I feel so inadequate. I am not even at a low weight, let alone underweight. I binge and I restrict, I occasionally use laxatives. I do not qualify for any merit though. I am a failure.


December 24th 2010
This time last year I had not eaten in 3 days.

Today, I look in the mirror and see someone who has gained a disgusting amount of weight over the year. I see a failure.

November 23rd 2010 
I am petrified of Bulimia.

"By November, you wish you were dead. You want nothing more. Every day, every fucking day, you run up the steps of the house, breathing hard, swing open the cupboards, thinking: You pitiful little bitch. Fucking cow. Greedy pig. All day, your stomach pinches and spits up its bile. You sway when you walk. You begin to get cold again." - Marya Hornbacher

Firstly, I'm petrified of going back there. It makes every day a living hell. 1000's and 1000's of calories, 10's and 10's of laxatives, day after day after day. It's painful, it's expensive, it's time consuming and it's humiliating. I loathe myself for ever having been there. Last night reminded me how petrified I am. I consumed so many calories, took 20 laxatives then pretty much haven't slept because I am in such excruciating pain. I cannot comprehend how I used to do this daily.

Being at University and firmly away from the majority of bulimic behaviours it has become so apparent how much it has physically damaged my body...let alone the emotional/psychological scars. If I continue, I truly believe that one day, being eating disordered is going to kill me.

August 18th 2010

Disordered Eating.

I love it and I hate it. I'm not sure which is the most prominent.

I'm not sure what my current "official" diagnosis is but in my opinion I no longer fit the diagnostic criteria for BN thus putting me back into the no-mans-land that is EDNOS. As much as I hate the fact that it's almost a kind of limbo, it is 100x better than being diagnosed as bulimic. I was so so humiliated when I read it in my adult services referral despite knowing that it was the logical diagnosis. Looking back, I would say that I have fitted the EDNOS diagnosis for at least 5 years and even before then I had an extremely unhealthy relationship with food. All in all I would say that my eating has been "disordered" in some way for around 10 years. A whole decade of my life has revolved around food. How utterly depressing.

It was only in later years that I realised a friendship with (food) can overnight turn into a relationship with the enemy.

I think currently a large part of eating stuff is to do with proving myself. I feel like such a fraud and I guess the EDNOS diagnosis doesn't particularly help with that. It's like I'm not "good enough" to have a "proper" diagnosis. I know this is totally irrational and illogical thinking and I should be striving for no diagnosis at all but yeah. As much as I hated being told I had BN, it also made me feel oddly (proud?) - like, I'd actually done something to an extent that deserved recognition. Even though the recognition was negative. I am desperate to get my BMI back into the 19's. I feel so disgusting given that people know it's above that. 19 would be bearable because at that weight I was told that I should gain but that maintaining would be okay too. I know I still felt fat at that weight though.

I hate how competitive my brain feels. Recently, I've been immersing myself in literature and programmes about eating disorders and I despise these people that are 80lbs or whatever. If I were 80lbs my BMI would be 11.6 and though that's not an impossible BMI I know that I would be in a pretty bad way if I reached that point. To be classed as "underweight" (assuming that underweight is 18.5 rather than 20) I would need to be 125lbs/57kg. I would still be 45lbs (more than 3 stone) above these girls who boast about being 80lbs and it makes me sick with jealousy. Even if I was underweight, even if I was 100lbs, I know I would still feel fat.

"It was not that I thought that I wanted to be sick. It was simply that I was actively doing all I could to be sick. On one level, I wanted very much to get caught. I did not want to get caught to be saved. I wanted to get caught to be seen as something, to have a claim to greatness, to ave the sick admiration that comes to those of us who destroy ourselves particularly well."

Some of the things I have done to myself because of this "illness" shock me. It feels completely normal at the time but when I see it in retrospect I know it's not right. I have drunk boiling water numerous times to try and prevent myself eating. I have bitten my cheeks and tongue until they are raw and ulcerated. I have taken 20 laxatives a day for days at a time. I have starved myself for 3 days because I knew a difficult day of food was coming up. My intake has swung between 0 calories in a day to 11,000. I have binged before 7am and after 10pm. I have spent hundreds of pounds on binge food and laxatives over the years.

I've been googling various weight stuff and it seems that the average height for a UK woman is 5'3.8" and the average weight is 147lbs. That would make the average BMI 25.4. If I was the average weight for the UK my BMI would be 21.4. It's weird seeing things in that kind of perspective. I feel absolutely massive at my current weight (not just due to bloatedness from the past week, I felt massive before I went away). I'm pretty sure that if people knew my weight they'd be shocked because the numbers seem so totally wrong. They are too low for how huge I look. I must disgust people. In an odd way, I miss the fear of turning up to CAMHS and risking being weighed. That fear kept me more on the straight and narrow so to speak. I'm pretty sure my BMI would be less than the current figure if I was still at risk of being weighed. Further googling says that my weight *could* be considered normal between 125lbs and 170lbs. That is a massive range and I know it's dependent on frame size but still...

I seem to feel some sort of weird pride or accomplishment or worth when I read that stuff to do with ED's has been written about me (and I think this partly why I want to read my CAMHS file, to prove myself).
Laura often doesn't eat but denies having an eating problem at the moment.
...significant weight loss...
...due to concerns about her low mood and eating pattern...
Eating and food is still a big issue with Laura. Everything she does every day is thought about in terms of food. When Laura was weighed on 22nd July 2009 her BMI was xx.xx. She has refused to be weighed since, both by me and her GP. Laura has told me her current BMI is xx.x but this may not actually be the case.
Although Laura's BMI did go down to 19 at the end of last year, when she was weighed on 24.5.10 her BMI was xx.x dressed with sandals on.
...Bulimia Nervosa with frequent episodes of binging and purging...
...supporting Laura to increase her eating...

There was one point way back when I first started going into my eating stuff with C where she offered to refer me to the dietitian to get a meal plan arranged. I'm pretty much 100% sure I wouldn't/couldn't have followed it but I'm really intrigued now as to what it would have included. I think when my eating was most settled I was generally having cereal for breakfast, a cereal bar and a yoghurt for lunch, a fairly calorific snack at some point during the day and then the usual family dinner. I'm pretty sure I must have been consuming a fair amount of liquid calories around this time as well. At the moment I'm still heavily relying on cereal. It's my first port of call if I'm too scared to spend more than a minute in the kitchen. I'm so curious as to what would be considered a normal "balanced" diet and how many calories each meal would consist of etc. I really wish I'd been referred, even though I would have more than likely ignored what was said.

One thing I spoke a lot about with N this week was the fact that aside from food I feel I have no identity. Without my eating disorder, without food, without calorie counting, scales, laxatives, exercise, without all of it...I don't know who I am and I think that's partly why it is so scary to let go of it. I've no idea how I could fill my life if every second of every day wasn't consumed with thinking about food? I mean, I have food and then I have the Laura that the world sees. That Laura is a facade and I am tired of being her, but I can't let people know that I think of food 24/7. It's difficult. N says I need to find my identity in teaching or youth work...whatever I end up doing next year. How do I go about it though? I mean, it's not like I'm going to leave home and the disordered thoughts are just going to magically disappear from my head...

What makes eating disorders difficult to overcome without professional help is the insidious way they progressively damage an already impaired self. They ultimately become the person's identity, rather than merely an illness the person experiences.

---

So, there we have it, most of the people in my life probably had no idea what was in my head/going on in my life when those posts were written. Eating disorders are manipulative, secretive and need to be taken seriously. They are a mental disorder with physical symptoms. Physical weight is such a small part of a massive issue. I'm not posting these for pity or sympathy but to raise awareness and reduce stigma. ANYONE can have an eating disorder, not just middle class, A grade, ballet dancers. I was never skeletal, I was at times underweight but never significantly enough to recieve the coveted Anorexia Nervosa diagnosis. There are thousands of other people, both male and female, young and old who are in a similar position to me. Stuck in a No-Mans-Land, feeling like their illness isn't "worthy" or "good" enough, that they've failed. When in reality? They're just as ill and often at more risk of complications *because* they're not thin. Those who are emaciated are noticed, supported, given help. Those at a normal weight can go for years unoticed, doing unknown damage to their insides, sometimes irreparably.

So there we have it, Laura opens up about disordered eating once more...it's uncomfortable, but if it helps just one person to understand or someone to feel less alone then it is worth it.

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