recovery, relapse, remission

Caring is good. Thinking is also good. I am grateful for those in the ED world who think and care deeply.

Dr. O'Toole at Kartini is one of those thinkers. She takes her experience and her training and intellectual drive and is willing to form and speak opinions where many either just keep doing the same thing - or complaining.

O'Toole's recent blog post, Is Anorexia Nervosa a Chronic Illness? will undoubtedly alarm some people, cause some to nod in agreement, change some minds, and fail to move others. For myself, someone who hears from countless people who feel cheated or heartbroken or self-doubting when a loved one relapses, this post touches on many things that resonate. My own daughter relapsed after an initial recovery. And recovered - no, I believe I will now adopt O'Toole's language - my daughter's anorexia is successfully in remission.

Some parents are afraid of the word "chronic" and think that means remains ill all the time - that is not the meaning as I read it. Chronic here means can come back under certain circumstances - some mysterious.

And that brings me to something we discuss too little: vigilance. For many years our daughter had us to remain vigilant to signs that her eating disorder might reassert itself in times of stress or low nutrition. Now she is both capable and competent at remaining vigilant herself.

That, actually, gives me even more admiration and wonderment at my precious daughter. Gaining remission was hard, maintaining it is heroic. Instead of fearing the illness, I now concentrate on admiring my dear daughter's healthy full life, and vigilance.


  1. My respect for Dr. O'Toole is growing by leaps. I think her words ring true.

  2. Dignity, respect, compassion, collaboration, hope, optimism, cautious realism, vigilance, non-judgmental honesty ... and acknowledgment that much remains to be discovered by science but avowing commitment to a goal for easing suffering and offering critical tools, approaches and interventions ... and most of all, preparedness, education, research and support.

    That article was an excellent summary of the challenges, the despair, and the countering expectations for fulfilling life despite/in spite of threats to remission.

    Wish I was the child now that I was a couple decades ago. Makes me wonder if access then to what they're learning now ... if things maybe wouldn't be less chronic but more stable ... and with less trauma, cost, and shame.

  3. I respectfully beg to differ. I think the language of chronicity and remission is damaging and also alters the course of illness and our responses to it. Anorexia is not necessarily a life sentence, even in the "remission" sense of the word. Teens especially need to have hope that they can get past it and move on.

  4. Anonymous, I'm not sure we are actually disagreeing. I also believe in hope and moving on and don't think of an ED as a life sentence. I believe my daughter may never again experience her eating disorder - IF she continues to be vigilant in terms of avoiding nutritional deficiencies, managing stress, and getting help as soon as she has any sense of moving toward ED thoughts or behaviors. But I do believe she will always be at risk of falling back if she tries to live as if she doesn't have that predisposition: dieting, burning out emotionally, denying her feelings, ignoring resurgence of ED thoughts.

    Getting past it and moving on, to me, is living a full and completely non ED life.

    Does that make sense?

  5. I like to believe that "always at risk" is not true. I do know a number of adults who had EDs as teens, recovered, and never had trouble again.

    I also think language is powerful. The very act of framing an ED as something you go into remission from rather than recover from--I worry about the message that sends.

    At the same time you have to be pragmatic and, of course vigilant.

  6. The doctor *did* say that there are, indeed, patients whose experience is atypically full remission of the forever-and-ever amen type. But we don't really know what a lifetime course yet is or how it looks, seeing as we haven't had generations to treat and document eating disorders and outcomes. The oldest patients who can be/have been identified as such are usually in their fifties or reaching sixties ... and we often only know about them because they end up back on an IP unit at that late stage of life, or because they die from complications related to nutrition status or ED behavior.

    Remission doesn't need to mean "transient." Remission could last a lifetime.

    However, denying the statistics now available doesn't change them. Better to know what we're dealing with and work toward strategies that minimize or negate a chronicity tag.

    It's denial of another kind to turn a blind eye on information that could help a patient or family avoid relapse. It isn't unlike a preemie baby, who is at-risk for any number of issues for a certain number of years or in some cases for a lifetime. That doesn't mean they will occur. That doesn't mean there isn't intervention, curative or otherwise. But we know there is susceptibility ... why hide from that? It's like sticking fingers in the ears and singing lalalalal ... you can't make me hear you. The noise continues, whether you hear it or not.

  7. No, I don't think it's anything like sticking your fingers in your ears and going la la la. I'm quite aware of the statistics and realities of EDs; my d nearly died from one. But I can tell you that there's a huge difference between saying that she is recovered--knowing that one needs to be vigilant, knowing that one needs to be wary--and saying she's in remission. I wonder if that wording can sometimes be a self-fulfilling prophecy.

    And I don't think it's all that atypical, actually, to recover fully, move on, and never deal with an ED again.


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