The (occasionally) ugly truth about recovery

I relate to a lot of the chronic illness literature out there, because so much of it reminds me of recovery. Not that I'm anticipating the eating disorder following me around for the rest of my life, but simply due to the fact that I can't ever let myself forget that once, I was sick and it almost killed me and it could easily do so again.

It's more than a tad depressing, sometimes, knowing that you don't have the simple luxury of "winging it" on a vacation. I have to make sure I have food with me, or at least access to some. I can't skip dinner because I just don't feel like cooking. Sure, these things are fairly minor, but there are a lot of them.

I remind myself: I am lucky. I am getting well. I am alive. I have a (mostly) loving family. I have my own apartment. I have a cat who I adore.

And all of these things are very, very true, yet they still don't take away from the grim reality of having been anorexic- what it meant for my past, what it means for me now, and what it will continue to mean for my future.

This disease, it changes you. Profoundly. While all of the changes can be positive, not all of them seem that way. Yes, I'm alive, I think, and damn isn't it hard sometimes.

In an essay in this past week's New York Times, physician Pauline Chen interviews a woman who had received a heart transplant nearly twenty years ago.

“There is a taboo in our culture against a sick person, post-transplant or otherwise, being honest about how difficult it is to live with serious illness and to live on the verge of death,” Ms. Silverstein said. “These folks admit to feeling grateful and sad, joyous and angry, optimistic and defeated, all at the same time; yet only half of their emotions are acceptable in the public eye.”

I asked Ms. Silverstein about how she had dealt with such pressure. “There is no question that I am eternally and profoundly grateful for life and for my good fortune in receiving a donor heart just in the nick of time,” she responded. “But my heart transplant life is a mixed bag, a miracle with a flip side: a wonderful, awful, amazing, terrible existence.”

This I understand: recovery is a miracle with a flip side. I have never once been encouraged to talk about this flip side. Not the flip side in the sense of isn't-anorexia-better? but in the sense of here's-what-sucks-about-recovery. I wish I had been granted permission to feel crappy about recovery. I know clinicians worry about scaring already ambivalent people away from recovery, and I don't think their worries are unfounded. But we need to bring these worries out into the open, shine a little light on them, and accept them so that we can all start to move forward.

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5 comments:

Ai Lu said...

Carrie:

I have always felt that having an eating disorder has aged me in a terrible way: I am much more aware of the darker sides of existence than are my peers (I am in my mid-20s). And I am that much more willing to dedicate my life to worthwhile causes, because I know what the edge looks like, and it is not pretty.

But -- it has gotten easier over time to face up to some of the negative aspects of recovery, mainly because the positive aspects become more salient, as well. It's interesting that you mention feeling a connection with people who are chronically ill, because those are the very people whom I want to work with, too, as a psychotherapist! In fact, I currently work in a hospital with patients who are at the end of their lives, and boy oh boy, I think having had an eating disorder has taught me a lot more about death than your ordinary person. For me, it is not nearly as distant a proposition as it seems to some of our patients. Is that the dark side? I'm not sure. I happen to think that I am a fuller person, having known the darkness.

On the flip side, I have learned so much from my eating disoder that it is hard to not think that there was some good in it, after all, and to wonder what my life would have been like if I hadn't had it.

But then again, I am one of the lucky ones. I came out of it.

Ai Lu

Carrie Arnold said...

I'm learning that honoring the not-always-splenderrific stuff about life in recovery makes the actually splenderrific stuff all that much better. Sort of like the cheesy statement: light is meaningless without dark.

It is, as therapist in my last treatment program told me, about adding the "and." It's not good OR bad, it's good AND bad. There is freedom in that, acknowledging the bad and dealing with it, not feeling guilty for feeling bad.

It's quite a complicated thought process. Until I read this article, I never thought about the emotional downsides of having an organ transplant. I mean- you're alive! But it's never that simple, is it?

Unknown said...

Speaking as a mom, I'll confess it is hard to hear my daughter express the doubts and the negatives of recovery. Having seen her ill, and suffering, but not understanding at the time how to put the pieces together - there is always the fear that those doubts expressed are really signs of going back... It felt as if any concession to ED was a step back.

I got a lot more comfortable hearing the bad, the ambivalence, the sucky stuff when I was more sure that we weren't about to have to go back "there."

But we DO need to hear it, accept it, learn from it, HEAR you.

And you do a good job of this, I think, telling us both.

Carrie Arnold said...

I know it's hard for me to understand- and I know it is for my mom as well, as I imagine it would be- that this sucky stuff can coexist along with the good. I have been afraid to voice these fears because perhaps it meant I was going to relapse (again) or go off the deep end (again).

And I can't always, even in my verbulosity, articulate the subtle differences between experiencing the pain of life after anorexia and the doom of impending relapse. I think the pain of life after AN isn't hopeless. Sad and tears and regret bordering on despair at times, but never with the "life was so much better when I was starving!" mentality. It's the grim realization that life wasn't, and realizing that you have to deal with what you have, right here, right now, that creates the pain. And that the only solution is to keep slogging through and being able to one day experience that pain at more of a distance, with more life and love to temper it.

Crimson Wife said...

I wonder if this is a difference between those in recovery from AN vs. those in recovery from BN. For me, being an active bulimic was very frightening, feeling like things were totally out of control. Recovery was tough (particularly in the beginning), but at least I didn't feel like I was caught on a runaway train.

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I'm a science writer, a jewelry design artist, a bookworm, a complete geek, and mom to a wonderful kitty. I am also recovering from a decade-plus battle with anorexia nervosa. I believe that complete recovery is possible, and that the first step along that path is full nutrition.

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nour·ish: (v); to sustain with food or nutriment; supply with what is necessary for life, health, and growth; to cherish, foster, keep alive; to strengthen, build up, or promote



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