"they have to want to recover"

One of the common sentiments in eating disorder lore is: "they need to want to save themselves." or "they have to want to recover"

No they don't.

How condescending to think that ED patients languish and die because they don't "want" to be better, or don't "want it enough."

How cruel to force people to choose to get better, to choose every bite, to resist falling back, and to have insight into the entire process.

And for a child? A child should have to choose whether to get better or worse three times a day plus snacks?

Until they are fully nourished, physically restored, behaviorally stable, emotionally safe, it is OUR job to "want" recovery enough to get the job done. Their job is to trust us until they can trust themselves again.

Comments

  1. Maybe you do not need to want to get better to recover, but it sure makes it a HELL of a lot easier when you WANT recovery -- want to challenge yourself and want to maintain that better lifestyle.

    I think its problematic when Maudsley borders on abuse and it is not a cure all, cookie cutter treatment.

    I know Maudlsey (I am 18) only set me back and created a huge emeshing of boundaries between my parents and I. Their method of forcing me to eat bordered on physical and psychological abuse. Eating became a power struggle and resentment as opposed "support."

    Only when I attended a program that put the responsibility to recover on ME (and I did almost get kicked out) did I THINK of what my ED had made me lose and recover.

    I try my phobic foods because I want to recover. I eat because I want to recover. I take social risks because I want to recover, etc.

    My relationship with my parents is much better when they are not controlling me.

    Just a personal testimony to what you have written. Although, yes -- if someone is on death's door, they should be hospitalized/intervention should be taken -- does not mean that it is not easier when someone wants to recover AND in some ways, Maudsley can most definately be abusive.

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  2. I think we'd all agree that having our kids or loved ones "want" to recover is the ideal.
    Still, there's nothing easy about beating an ED even when one wants it.
    If parents being involved seems abusive to you, it may be because it's because the ED is taking the strongest stand and is defending itself. I can understand how horrible it must feel to a person struggling to consume the amount of calories required in order to gain. I've seen the alternative though where parents are told to back off and it often means that the ED thrives for many years. Some kids/adults who are bulimic turn to drugs or other highs in order to cope with the pain they feel. As a parents we are AFFECTED by this so please don't think this is an easy thing for us. Sometimes though love appears to be cruel.
    Sometimes a parent has no idea how to handle the pain of their loved ones during re-feeding.
    Sometimes parents do abuse when they are frustrated. This though is not the purpose of Maudsley,IMO and shouldn't be confused with parents who are giving their children the daily nutrients they simply can't consume on their own. At this point in time there simply isn't much support offered to help parents do this. It's still better than a tube feed or worse!
    Maudsley is meant to give families power to help free their own children of an ED rather than go into places that often violate much more of their privacy than home could ever do. While most places are good and have good intentions some are destructive to a persons mental health, leaving them questioning and blaming for years. Just hearing that you believe you have enmeshment problems is a typical therapist's way of earning your trust. Parents who love their children don't worry about winning your trust. Of course we're enmeshed in your lives. Twisting it into a bad thing is where it gets deceitful. Much damage is done in the name of bad therapy. We want you to be healthy and an ED is far from health. We also want you to have your independence and honor yourselves. We are the ones who lay awake either praying you get better or hoping that you somehow stop fighting and start investing yourself because you realize we are helping you. We are also willing to lose your love for a while if it means that you can live. We also hurt.
    When most parents begin such an ordeal they are scared and unsure they can handle the hate and abuse that comes back to them from the child with the ED. Imagine yourself trying to feed "yourself". I bet you are a fighter.
    My daughter hated the idea that she may end up in a place where she was watched 24/7 and this was a huge motivator for her. Luckily it meant I could guide from a distance and give her more freedom. I had great respect and empathy for what she was going through BUT the ED was not an option. I was able to give much of the responsibility for honoring herself to her but to be honest with you the ED had stripped her of much of her confidence when she first began her fight. She needed us to assure her she was made of some pretty tough stuff, much like yourself and could invest herself in the fight.
    It's wonderful that you decided you were ready and deserving of a life without ED. I think it's important though, that you try to respect that even though we know there's more than one way it's a bad idea to trash a method that is bringing back our kids in a timely manner so that they might lead a normal life again, not perfect, just normal. Kindness is a worth cultivating in this regard. If you met Laura I promise you you'd have asked her to take you home and help you! She's that kind.
    What can you do that will motivate people who are choosing an ED to change their mind and invest in themselves? This may be a really good direction for you. Try not to get stuck in anger because you needed a different way to find your recovery. Forgive your parents. Forget enmeshment as bad and be glad they cared enough to try however poorly they handled it. We're all just trying to do the best we can. Honestly. If your parents were truly crummy I am sorry.

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  3. Sorry Mary, I didn't mean to be rude. I think in some ways with young children, Maudsley is a very good treatment method because children ARE still malleable and have great trust/respect for their parents authority. However, because of the abuse I endured under the ruse of "Maudsley" I tend to associate it with draconian control, being patronized and talked down to.

    I think I was the "wrong type" of person for Maudsley -- too old, and sick much too long (over 4 years) and I didn't respond well to the treatment.

    I agree that my parents intentions were 100% to help me. But when they became abusive it was very hard for me.

    Because I am treated in the adult system where everything is voluntary, I have trouble tolerating the idea of "controlling" parents -- but I know this is how it is in pediatrics anyway.

    I just think sometimes parents are already too emotionally attached to their children and this can make the experience of refeeding traumatic for both the child and the adult when they run into problems. In some ways refeeding with a clinically detached team is good. . .

    I also think that medical monitoring is necessary and a refeeding plan needs to be drafted by a dietican -- Maudsley does not always include this. . .Parents are not experts in medicine or nutrition.

    And the other thing that worries me is that Maudsley tends to shun therapy and psychological basis for eating disorders as BS. . .

    These things are troublesome, but maybe you or Laura can shed light on a few issues?

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  4. I don't know where you experienced Maudsley, anonymous, but I wonder whether it was the true form of family-based treatment.

    True Maudsley does not shun therapy; a Maudsley therapist is a key member of the team. It includes rigorous medical monitoring. (The dietitian's input is less necessary, IMO, once parents get the hang of what's needed. It's not rocket science.)

    I'm not sure what you mean by abusive, either; Mary's right that what ED perceives as abusive may be parents fighting for their child's life. It's hard not to get emotional when dealing with an eating disorder--hard not to feel angry at times, for instance. Parents are only human. The very emotionality that can sometimes tip over into frustration or anger is also what gives parents' efforts the fierceness necessary to combat ED. A clinically detached team is also a team that will allow ED to make all kinds of inroads--you can see this every day in IP wards all over the place.

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  5. Anonymous - 2 years ago my daughter would have been the same age as you and would probably have said much the same as you. Now that she has been into an IP place, although I can't speak for her, I suspect that her perspective might be different and she has some things to be critical about the approach there, including the fear and morbid attraction of mixing with the other patients.

    Of course it is true that if ANY treatment process (for any illness) descends into a battle against the patients' will, then life will be more difficult both for patient and caregiver. I think that one of the major differences between parents who love their children and detached professionals is that at this point the parents will keep going (yes, risking the hatred of their child and yes, risking the possibility of abuse - the situation in our family became abusive on all sides, something I deeply regret), whereas the detached professionals will walk away - less risk of a fight, more risk of the illness gaining ground. EDs are risky illnesses, and mistakes are made in their treatment by many many people, but the important thing is to learn from mistakes and to keep on keeping on until the *&^%$s are beaten in whatever way that works for the individual concerned.

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  6. Anonymous,

    There is so much in your posts that I'd really like to engage on, but this is a tough forum for a real conversation.

    Mary, Harriet, and Marcella have covered much of the ground I would have - with passion and intelligence.

    Let me just say this: anonymous, parents are imperfect. Even with all the resources in the world and the best intentions we falter. No one trains us in how to parent, and no one even warns us about how to parent in an emergency.

    Eating disorders distort the world for both the patient and the loved ones. The aftermath is often ugly.

    But the enemy here is the eating disorder, not each other. And the means to extirpate the eating disorder are never easy or pleasant or welcomed by the patient. It is hell.

    I am so glad you are recovering, and I hope that with time you will forgive the world for letting you suffer so. And I believe with time you will look on your parents' role in a different light. And yours.

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  7. Hi Laura,

    Just wanted you to know, that I read your blog each day and I am not here to aruge -- just to engage in discussion -- I hope I didn't offend anyone before.

    I will sign my posts as A because I don't have a blog, so I have to post as anonymous. But I don't want my posts to be confused with those of trolls who post under the same ID.

    A :)

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  8. A:)

    I'm honored to have you "here" and welcome your comments and insights. "Preaching to the choir" is easy but dull. Discussion and engagement are the only way to learn!

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