How about writing a blog about some other aspect of yourself, some other passion other than eating disorders? It's interesting that this very focus which no doubt provides much support and validation becomes what you are known for. It's a bit of a double edged sword, no?
(I hope I am not getting myself into trouble again : ) )

I am working on a science blog, actually. And this blog actually isn't as huge of a piece of my life as it may look. I do lots of other things, too--they might not get blogged about, but they do happen. :)

It's nice to hear this side of things discussed! After living with OCD (I think) for most of my life without even realizing it, and then having it take over my life COMPLETELY, I sometimes don't know where to go from here as I continue to get better. This thing that helped me define who I was, this thing that dictated my life in so many ways I never recognized, is starting to be tackled and tamed. So what now? I think part of the reason it's taken me so long to really gain momentum in getting better is that the discovery that I have OCD was, in a lot of ways, a life-changing epiphany. I'm afraid if I get better I will forget what this was like, that I will no longer have that thing that has directed and defined me for so long, both before, and after, I figured out what it was.

It's nice to see this phenomenon described because I don't hear about it much in the OCD world. Sometimes I feel like I am strange (or worry that perhaps I don't even really have OCD) precisely because I am so attached to the diagnosis and have mixed feelings about how it has aided, as well as hindered, me. It seems like a lot of the literature out there on OCD focuses on those who "just want their lives back." Those who just wish the thoughts and compulsions would go away, and that they could live peacefully without them. That they could go back to the way things were "before." But I cling to my disorder tenaciously, wanting to get better on the one hand but on the other, dragging my feet every step of the way because I fear just letting myself be. I'm afraid of not making myself perform compulsive behaviors even if I don't really feel a need to do them. I make progress, notice that progress, get scared, and run back to the "comfort" of the compulsions, not because I feel that much of a need to perform them now, but because I feel untethered without them.

Anyways, thanks for writing about this. As I said before, it is something that I really identify with but don't often hear expressed. It makes me feel like there are others out there, too, who know what this is like! I'm apparently not the only one who wants to get better but at the same time fears that getting better will leave them floating around in life with nothing to anchor them down.

I had the same question: Wheres' my script. I needed a system, a way to know how to navigate my life. If I don't count calories, then how do I know how to feel about my day? If I don't have exercise rules, then how do I know how to spend my time? Etc. etc. It didn't only give me a way to spend my time, it gave me a way to allow myself to feel calm and satisfied with myself. I've since realized that there is no script in the same way AN (or insert any other ED) was a script. That doesn't mean you have no guidance through life or no way to go about making decisions. As cheesy as this may sound, your new script is found inside of yourself. You make decisions based off what the true, core, inner you wants. And you don't have to "figure out" what you want. You don't have to justify or rationalize what you want or what you do with your life. It's as simple as this: you want what you want because you want it. You do what you do b/c you like doing those things. Your script is inside of you... it is the voice of self protection, the voice of self-knowing, the little intuitive voice. If you decrease the amount of distractions in your life and allow yourself to trust yourself and your intuition, and you sit quietly... you'll be able to know how to get through life. The answers are always inside of you.

Yes, yes, a thousand times yes. I've always had self-control. I exercised daily because it was the right thing to do. I practiced restraint with food for the same reason. People said I had an eating disorder here and there, but I justified and held my ground- no, I do not. I'm just careful, health-conscious, deliberate. My therapist insisted I had an ED. My doctor agreed. They started setting limits and shit. They wrote things on my chart. I was livid. I was sent to get my blood drawn, but noticed that "anorexic" was written on the order and tore it up in a rage. I was sent to a dietitian, and I tried to get her to see reason, but she said I had a fucking disorder too. It felt like they stripped my entire fucking person down to the bone, and laid all my skin, organs, veins and all on a sterile metal cart, passed it around the room while I laid on the bed screaming, and now they want to wheel it right out the fucking door. And what the HELL am I supposed to do then? Go back? To WHAT? To before I thought like this, acted like this- when was that- oh maybe 2, 3 fucking years old??? So I'm supposed to become a fucking toddler now? I've got no coping mechanisms, no identity, no recourse except THEM- the very people who are stripping away everything else I'd want to lean on. And how the hell am I supposed to handle life in the meantime. "Recovery"? I'm still pissed off and trying to swallow "diagnosis." So apparently I don't have it all under control, apparently I'm not respectably, enviably self-restrained- no- apparently I've got a fucked up head and I'm killing myself. Talk about a blow to my pride and my identity. And apparently I am being required to let it go- what the hell is going to be left of me when it's gone. Ugh. Such a rant. Hope it's not too toxic or offensive- this post totally struck a raw nerve w/me, plus I'm coming down off of Christmas chaos as well as dreading the onset of January, when, my dietitian tells me, we'll need to push onward and upward w/the weight. FUCK.

(not to mention the anguish of having to face and own up to all the sneaking and lying I do on a regular basis, in spite of having always considered myself a person who always tells the truth- the pain of owning that, despite my confidant exterior, I am constantly fragile and terrified inside if I don't have those disordered thoughts and behaviors to lean on- the agony of feeling forced into doing what other people tell me to do when (ask my parents) I have NEVER relied on anyone but ME to tell me what to do, in ANY situation- loss of identity, loss of familiarity, loss of independence, loss of sanity- aggggghhhhhhhh)

Really interesting post - and it highlights something I have discussed a lot on another blog - which is that by viewing AN purely as a neurobiological/brain illness, we are taking the aspect of 'self' and 'identity' out of the equation.

Everyone I know who has or has had AN (which includes me) views AN to be part of their identity. The identity aspect relates to either the thin body, or mastery through controlling the body through diet/exercise/purging etc. Many people with AN fear that if they recover they will also lose part of themselves; i.e. an aspect of their identity that they have a love-hate relationship with. Perhaps without AN they will have no identity...

I used to make videos on YouTube discussing my AN from a theoretical and philosophical standpoint. After being weight- recovered for a while I started to feel that I didn't want to be identified as 'Cathy the Anorexic, or Ex-Anorexic'. I have other talents, a PhD, a family, cats, friends... I deleted ny YouTube videos.

My psychiatrist once said to me "you get rid of AN when you find something to take its place". He said that knowing that I will always be anxious, obsessive, perfectionistic etc., because that is part of my personality, and these traits were what made me vulnerable to AN in the first place. I needed to develop an alternative means of managing these traits - in a positive manner as opposed to starving myself and destroying my body through exhaustive exercising.

I agree with HikerRD above. You are an excellent writer Carrie, and I love reading you science articles. You are smart. As a fellow science geek I'd love to read your science blog!

I am so afraid that there will be nothing left to me if I get rid of my ED entirely. I feel I will be completely empty. I don't know who I was before my ED because I've had it for so long, and as I slowly recover I am finding nothing. That makes me want to crawl back to the ED because it was safe there. I'm too scared that I will not like who I am without the ED, but more scared that I will find nothing.

I've always hated the terms anorexic and bulimic because they, in my mind, described very little of who I really was. I've wondered for some time now if having the diagnosis has been harmful in a way because the diagnosis gives the illness much more power than it might already have? Suppose as Cathy said the therapeutic goal is primarily to replace it with something else to manage the runaway traits that is healthy. It would be good, I think, to get away from the thought that these diseases are part of our identity/who we are.

Yes, I too agree with HikerRD and Cathy(UK). As much as I love to read your blog for the support, and as much as I wouldn't want to pry into your private life - I would love to hear about things that can exist outide ED.

hm - I don't think you're having a rant. I think you have just stated EXACTLY what I am feeling (I would just never have the nerve to say it). I can't stand any of this. I am always the one everyone relies on, and to be told I have a mental illness is so galling. I jsut want to yell all the things you just did.
Well done. I hope it helped to get it off your chest - because it certainly helped to read it.

Thanks, Cate! I wallowed in rage and self-pity for quite a while after I spewed that out of my fingers. Then a couple of things helped: 1. Reading that other people feel the same way (except perhaps less rage)- there is comfort in knowing I am not alone. And 2. Taking accidental note of Carrie's "About Me" section on the right of her blog. It caught my eye and it struck me that, although this blog is all about EDs, her description of herself is very... not. She defines herself in all kinds of ways and then adds an "also" phrase noting the ED. As if she is all kinds of great things, and the ED is just a side note to her person. And yet, she still has the clarity and understanding to write such touching, meaningful pieces about EDs that we can all relate to. I've been pondering that, and I realize that I would like to get to a place where I too can define myself as all kinds of things separate from all the ED thoughts and behaviors that I have, but I'll never figure out how to do that unless I get over the recovery hump. I guess if I cross the border and find there is nothing left of me on the other side, I can always go back. But I think perhaps it's worth a try.