Thumbs down from patients

I'm sure most parents know that the Internet is filled with teen angst, and that an eating disorder brings out some of the worst of it, and that Family-Based Maudsley gets a vigorous thumbs down from patients during the treatment, but some may need a reminder of the cognitive dissonance and fear and subterfuge of patients:

PSA For The Purgatiorium

I also suspect that a parent or two who read this blog may see their own child on that thread.

Comments

  1. I just wanted to let you know that I am a "patient" and I think this method works. Of course it sounds like hell to the patient initially! That's because it is making us eat. But looking back, I can see that I truly was going insane because of lack of nutrition and actually eating was the first thing that started to heal me. I honestly do not think that anyone would "choose" recovery once their brain is so starved it can barely think anymore. I recovered because I started eating, not the other way around. :)
    xoxoxo
    Okie

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  2. The comments on there are screened, so I doubt mine will ever get posted, but I hope she reads it...

    I think she's lucky. Lucky to have parents that are trying to help her.

    Regardless of whether or not the Maudsley approach works, they're trying to help her.

    By doing that, they're demonstrating care for their daughter.

    Some people don't even get that.

    I don't understand why she would rather want to go IP than stay at home with parents that want to put forth effort to get her better.

    Maybe it's because I've done a tiny IP stint and then IOP... and I've known people that virtually hopped from one facility to the next, that's not a life.

    You're forced to examine things and to face demons and things you don't want to, both ways (unless I'm mistaken) - why not do it surrounded by people that are not being paid to care...

    And part of me thinks treatment facilities enable people with eating disorders anyway. You get so connected with others that have eating disorders.. form this tight knit community... this connection that is based upon a disease you share... If you recover from that disease you all but lose the entire basis of that connection.

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  3. My parents never did Maudsley or ever considered it or anything close to it. My parents still haven't even said the word "eating disorder" to me. They sometimes say phrases like "food things" or "things about food that bother you" instead of "eating disorder." To me, one of the best things about Maudsley seems to be the fact that the parents most definitely aren't in denial. I can't even get myself to say "my eating disorder" out loud... it doesn't help that my parents can't either. Having a therapist and a dietitian who are in my face about it sometimes really helps. I think things would be so much easier if my parents were more confrontational about it actually. At the same time, I'm sure that if my parents had tried Maudsley I would have regressed into a screaming, crying, fit-throwing, toddler-like person.

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  4. I'm learning a lot from all three of you - and I think other parents appreciate your comments as well.

    It means a lot to hear all this.

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  5. I still read the ATDT board daily -- some of the advice does make me squeamish -- not because it is not in the best interest of the child but because (only at times) it borders on abuse. I would like to see moderators respond more strongly on that board, but that is another story.

    I think though, it is the most promising method for young teens. And let's face it -- NO adolescent in any type of ED treatment wants to get better. My IP stay as a 15 year old was ridiculously negative and I was exposed to more of the anorexic culture. Looking back on my experience I can appreciate how hard it must be to treat adolescent anorexia. These girls are often stuck in their disorder, struggling and in the "pro ana" mindset that has become so trendy. Because they are still so sheltered by their parents they have no idea what they are giving up if they continue AN into their adulthood -- disability, giving up school, work, social life -- children cannot see the long term devastation the a chronic psychiatric illness causes.

    However Laura, I have to question your decision in including this "blog" link. Surely if you want to generate discussion about pros and cons of Maudsley there are better sites to look on than the rantings of preteeens who cannot spell. . .

    A

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  6. I actually think including this blog link is very valuable. It may be that these young people are not thinking at their full potential because they are ill and it may be that their perspectives are not the most sophisticated, but I think that patient voices should be heard irregardless of these things. I think too often anything a patient says or feels is dismissed as "the ED talking" and therefore not a "real" feeling or belief. The things these teenagers are writing may be delusional or irrational or misspelled but I think that they deserve to be heard and acknowledged as those individuals' very real understanding of their worldview in that moment. It doesn't mean that we should capitulate to these beliefs or enable them, but I do think there is value for the patient in knowing that their perspective (regardless of how disordered) is being heard and addressed.

    http://synecdocheblog.blogspot.com/

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  7. There are risks to posting that link. For one thing, it inevitably draws the attention of the posters to this site and to the forum.

    A, you and most of us here are familiar with the blogs and boards and voice of ED. I blog primarily for the benefit of parents who are often new to this world and unfamiliar. Seeing the kinds of thoughts of kids and patients about Maudsley offers parents a better view of how distorted and irrational the thoughts are.

    Plus, as I said, the parents of those kids often have no idea of their child's online life and will recognize a loved one there.

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  8. Perhaps bulimia is different than anorexia but I'd have to disagree with the assertion that "NO adolescent in any type of ED treatment wants to get better". The binging and purging very much frightened me as a teen as I felt totally out of control. It's true that I did not want to re-gain the weight I'd lost but I did want the bulimic behavior to stop.

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  9. Actually, most of the posters on that site are over 18. It's not a pro-ED community and the vast majority of members desperately want to recover. I think it's fairly rude that you linked to something like that, belittling it as teenage angst. How do you think this makes girls that are already wary and defiant of authority and uncomfortable with seeking help feel?

    I don't know what the Maudsley method entails, but I have concerns about any method that sounds so control based to address a problem that often stems from a fervent desire to control one aspect of a life that is otherwise controlled by others.

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  10. Well, I'm the one who wrote that PSA.
    Who are you (all) to say that my opinion isn't valid? I disagree with the Maudsley method, and that does not automatically make me some angry, malnourished teen who doesn't want to recover. I'm weight restored and want to recover, however I believe that this method will cause me to relapse. Nothing was addressed except for gaining weight in this method. And since many anorexics have a thing with control, I don't understand why it'd be a good idea to take away all control. It doesn't make the anorexic/bulimic want to recover. You must be pretty insecure to believe that anyone who disagrees with you can't think logically.
    I'm sorry you disagree with my opinion, but I'm allowed to have it.

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  11. Your opinion is important.

    But an illness that makes you pretend to be your own mother on an online forum, makes you rail against those who are trying to help you on a forum of patients, and makes you think that what I'm trying to do is invalidate you - isn't telling you the truth.

    When you are well, you may hold the same opinions. But without being well, how will you know?

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  12. Laura, SURPRISE! I have thoughts outside of an eating disorder! Believe me, it's not my illness that has me believing that I don't like Maudsley's points. For example, "It lifts blame from the parents." I hate to tell you this, but in some cases (many cases!) parents ARE a contributor to eating disorders. I'm not saying they do it on purpose, but it still happens.

    There's more to recovering anorexics to eating disordered thoughts and I wish you'd see that. Not everything is tainted by an eating disorder.

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  13. How dare you post a link from a private community! I happen to be a member of that community but did not comment on the post in question. I also happen to love that community. It is not pro-ed and I have found quite a bit of support and help from this community. Everything doesn't have to be your way or the highway. There can be alternatives that are just as helpful as your method. I resent the assumptions you are making about our community and its members. I am 27 and this is not teen angst for me. My relationship with my parents growing up was dysfunctional and something like this method would have pushed me further away. I really hope that you can see that each case is different. What works for some might not work for others. If you want us to keep an open mid about this method I would ask you to keep an open mind about our views as well. Also, please respect that the link you posted is from a private community with real people behind each comment. Your comments are hurtful.

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  14. We CAN spell, thank you very much.

    I wish you could see it from another angle, perhaps a more objective one.

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  15. I have similar criticisms about LC's beliefs and a lot of her posts make me cringe but some of you are not being entirely fair here. Laura was not the one who made the comment about angsty teens with poor spelling skills. It was a fellow eating disorder PATIENT named A who made that comment.

    All she did was post a link and she noted that some parents might find their own children on that site. It's the internet people! People post links to message boards and threads ALL the time. Sure, there's SOME degree of anonymity on the internet but there's NO such thing as privacy on the internet. There's no such thing as a "private community" on the internet. Don't post something online and then get all pissy and shocked when other people actually *gasp* read your words and comment on them! Really, what did you expect?

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  16. Assumptions, assumptions, assumptions.

    You are the very portrait of eating disorder ignorance &, what's worse, you identify yourself as an advocate for eating disorder recovery.

    1. The majority of the members of the aforementioned community ARE NOT teenagers.
    2. Parents are people, not gods who should be the ultimate authority on their (grown or otherwise) children's lives. They make mistakes. Some are abusive in very damaging ways. Who are you to say that parents are the key to unlocking eating disorder recovery? It's ludicrous & dangerous.
    3. "[...]the Internet is filled with teen angst, and that an eating disorder brings out some of the worst of it,[...]" Yes, an eating disorder is just a raging provocation of teen angst. Eating disordered people of the older variety are just completely tranquil & at-ease with life. *blaring sarcasm*

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  17. Sounds to me like you have some kind of God complex, Laura Collins. Not only do you advocate on behalf of shunning professional recovery efforts and (essentially) force-feeding children, but you get your rocks off on bestowing "enlightenment" upon all of the poor lost internet parents in desperate need of your help! Only the most nurturing of mothers would chalk anorexia up to "teen angst" and adopt the "sit down, shut up and eat" attitude. You are not a doctor, and as such you shouldn't be so condescending. You have all the same qualifications as I -- a 20 year old college student with bulimia-- do to instruct someone in the appropriate treatment of a mental illness. I am not "blinded" by my disorder either. I can see clear as day that you are full of it.

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  18. Laura Collins, my parents did Maudsley method because of your website (and they didn't want to pay for REAL treatment). Thank you for completely ruining our relationship. My parents and I have a horrible relationship now due to this. My eating disorder isn't any better except for the fact that I've gained some weight. I know you (even though you're NOT a doctor) believe that eating disorders are fixed once weight restored, but it doesn't work like that. That's like saying a depressed person can recover by reading a joke book.
    I think you should seriously consider (a) getting a doctorate so you can back up all of your "wisdom" or (b) leave treating eating disorders to the professionals.

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  19. Why so silent now Laura Collins?

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  20. Silent? Me? I don't know that anyone who knows me would be able to resist a smile at that.

    There really isn't a response to these kinds of comments. I approve them, because I have nothing against people saying what they think and believe. But there really isn't a response to make. Except sadness, and concern - and those I do have.

    I think it can be helpful for parents to see the hostility and fear of those with this illness.

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  21. Laura,

    I have priefly looked at these comments. A lot are very hostile.

    I do however think that your response is a little patronising.

    And again very broad and all encompassing in its judgement. A lot of ED sufferers are not at all hostile and in fact have a problem ever experiencing and expressing anger.

    They may not have responded in a calm manner but there is no way that you can be sure that all people respond to the maudsley method well even though it appears to be helpful to some. In fact research supports that. Sufferers may have a mental health problem but still deserve to have their opinions and experiences respected.

    You may minimise angry responses if you word the initial log more carefully.

    There is no way that anyone knows absolutely 100% what does and does not work for ED's (for different people), presently.

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