Face time

No hyperbole: I had an amazing time at the Renfrew conference. This may seem obvious and I don't want to lapse into any fluffy bunnies and butterflies here, but it's all about relationships. (Duh.)

I have said pretty much the same thing over and over for eight years**. So much so that I'm tired of hearing it. I've said these things in any way available: mostly written - in a book, articles, blog posts, web sites, online forums. I've given presentations, pretty much to anyone who would have me. I've volunteered and shown up and gotten involved. But I underestimated something critical: this is a field that centers on psychotherapists and psychotherapists are 'people people,' obviously. The tools of the trade, the power of the work, things that bring someone TO the field are interpersonal, intuitive, and deeply personal. That's why we NEED and value therapists and why we should get on  knees in gratitude that they do what they do - since most of us just don't have that skill set - I don't! Yet what makes therapists good at what they do also makes it very difficult to suggest they change for reasons like "data."

"You're not like I thought." I heard this in various versions this weekend. Mind you, some of these are people I've been seeing a few times a year for years. But this time I was on their turf.

The same went for what I was saying. It turns out that many people had formed opinions on me and on my views about parents and about the Maudsley approach that simply weren't true. Few of them had read anything I'd written. Very few of those in the ED leadership have, of course. Many, no, almost all opinions on Maudsley came from people who hadn't had any training in it. When they actually heard directly from me, in person, stuff I've said all along - they were surprised and interested.

A few people said they were now going to go get real Maudsley training. Some said they were going to re-think some of the things they say to families and some of their website content. That is all I want.

One gentleman said he found me rigid and extreme in my attitudes before, but sitting at dinner what I was saying didn't sound so fanatical. I think this is because the tool of MY trade, words, have to stand alone. People have to come to you, and want to. But in this world, without actual relationships and face to face trust, words are insufficient and won't do on their own.

It has taken a lot of work and time to get the opportunity, and the mutual trust, to have these conversations. I've thought of giving up in anger and frustration and burnout more than once. But this weekend was both humbling and a huge honor. I was moved by the sincerity and warmth and, yes, openness, that I encountered.

I want to give my greatest thanks, however, to my co-presenter, Dr. Judith Banker. How kind of her to invite me, and how generous of her to spend the time she did not just working on the details but talking about the ways we all think and speak and feel about this. I learned more from her these past few months about the realities of our mutual interests than in a long time before. Things are changing, and to the good, and Judy has my admiration and gratitude.


**Parents don't cause eating disorders
**Parents can be an important part of treatment

Comments

  1. Laura - I am so happy to read this! I am not surprised at all that these clinicians found you so wonderful in person. You are kind, engaging and a very gentle soul who is extremely passionate about what you do. Sounds like some of those apples may be listening!!

    Mary Jeane

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  2. That is just fantastic! Things that are difficult to learn must be heard over and over. Obviously, you are reaching that magic point with some people where it is sinking in! You have my enormous thanks and admiration for doing this very hard work.

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  3. Hooray Laura! Sometimes I wish I could find your words to respond to clinicians about what we need as a family. I keep saying I don't want to control, I want help in learning how to best the best support for my daughter. I need to be part of the team. I just keep getting I need to find support outside of my daughters therapist.. I feel sooooooo frustrated. I am very hopeful that your are a vehicle for change. You have the experience and the words to educate the field. You are our voice. Thank you, Laura Collins , you are my hero!

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  4. On the page and in person we all know that you are informed, succinct, empathetic, and compelling (oh, and pretty much always right ;-) !) but I know what you mean about making that personal connection. Our d's psych once offered to talk to a teacher at school about why d needed special treatment for certain exams; his knee-jerk reaction was to refuse her offer saying he thought she might 'brow-beat' him into submission. He had never met her (or even heard of her) before but she was a senior consultant psychiatrist with a complex area of specialisation and he was frightened of that - didn't have enough confidence in holding his own against her perceived level of knowledge and skill (both practical and verbal) in relation to his own area of specialisation. When he finally was persuaded to talk, he found her sympathetic and not at all frightening - in fact he found that they might be in a position to work together. Fear is a terrible impediment to change and 'betterment'. You are a beacon of hope for us all; glad you are making those connections.

    Erica B

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  5. Well, I don't know that anyone found me "wonderful!" More "surprised and interested."

    I suppose the best description of what is happening is "disarmament." And that's great!

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  6. It's absolutely great that you were able to meet so many people and that it went so well. It looked a very interesting programme and I'm so glad you went. Face to face discussion is still so necessary for the dispelling of myth and the connection of people who might otherwise have barriers between them.
    Lisa - don't be too upset that you can't have this kind of conversation with your own team. I really enjoy meeting with people interested in the subject and have had what I hope were fruitful discussions on both sides with doctors and therapists from as far apart as London, Norway, The US and Candada. My own local team still give me nightmares!

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  7. I'm really glad you enjoyed presenting Laura, and I'm glad that what you did was well received. I am also glad that you have respect for therapists, even if you don't necessarily agree with the views of some of them.

    As you know (and others must know who read my comments...), I debate with you and others quite a lot. One of the main reasons why I debate is that I think EDs are horrible illnesses, and like most people who comment on this blog, I want the best treatments for these awful illnesses. I also know that Maudsley/FBT simply wouldn't have and couldn't have worked for me given some of my characteristics/co-morbid difficulties, those of my family and the way in which my AN presented.

    You mention data in this post. All data on Maudsley studies to date have revealed that there are non-responders. Indeed, the most recent study by Lock, LeGrange et al. revealed a massive non-response to Maudsley of the population studied, even though the overall conclusion was that statistically (as based upon probability) Maudsley is more effective than other therapies.

    Another issue that has always confused me about your blog is that you seem to frequently view therapists as individuals who suggest that parents cause EDs. (Please correct me if I am wrong in that observation). Interestingly, I have never met a therapist (and I have had a few in my time...) who has suggested that my parents caused my ED, or that my ED resulted from family problems. No professional has ever blamed my parents and suggested I should be taken away from them. I mentioned in my previous paragraph that Maudsley wouldn't have worked for me in part because of my parents' characteristics. By saying that I am not suggesting that my parents were in any way abusive, that they neglected me, or that we were too inter-meshed. I don't blame my parents' treatment of me as a cause of my AN whatsoever.

    I have said before that the most helpful treatment I had for my AN was psychotherapy. This therapy was not started while I was underweight and actively anorexic but after I had gained weight. All the professionals that I saw through my many years of AN insisted on weight gain as a first line treatment. There are many facets to psychotherapy, an important one being the way that we, as inidividuals, view ourselves, our interpersonal relations and our role in the world.

    Even though once established, AN takes on a life of its own, the dieting behaviour that precipitates it is often (but not always) undertaken because the individual has issues with themselves: their identity, their self-worth etc. Psychotherapy (with a good psycotherapist) can be hugely important in enhancing our own self-understanding. It has helped me enormously and has prevented me from relapsing.

    And for anyone who reads this comment and my debating: please note that I adore Laura and her blog :)

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  8. Well done, Laura! ~ Judy and you must have rocked Philly. Two phenomenal women educating many. Thank you for your perseverance all these years.

    Just a note on something I have noticed about what you've experienced over the years(I have experienced similar). I have noticed a current that sometimes runs thru the ED field (field meaning all those involved --from treatment providers, parents, sufferers, etc.) -and it sounds like the current that you have been tossed much into until this conference.
    The current I have noticed is: people can get nervous about new ideas/research related to ED because it's "new". I have noticed that people are afraid of change (even if the change will benefit all those affected by ED (including care-givers) in a positive way) because they are afraid the change will shift the entire field and negate already existing "what works".
    People need to become comfortable knowing that: change can be good, and change does not delete all that we already know. ie: Some research applies to some who suffer, some insurance procedures apply to some who suffer, some methods of treatment apply to some who suffer ---but in those 3 (and many more), not all apply to all who suffer.
    The more people relax into knowing that something 'new' does not mean 'the entire field is changing', the more comfortable they can be about learning about the 'new'...like Maudsley.

    I hope that makes sense...

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  9. Cathy in UK said, "I have never met a therapist (and I have had a few in my time...) who has suggested that my parents caused my ED, or that my ED resulted from family problems. No professional has ever blamed my parents ...."

    Perhaps this is because you are in the U.K.? As a parent in the U.S., I have been blamed directly and indirectly for my daughter's AN. No one stood up and pointed a finger at me, saying "YOU DID IT!" but the message was VERY strong that something in her family situation and/or upbringing was responsible for her ED and, only by fixing the family could she get well.

    BTW, she had 2 stays of 3 weeks each (a year apart, at age 15 and 16) at the very Renfrew Center where Laura spoke and the focus was ALWAYS on the role parents played in causing the ED and rarely on how parents could help their daughter get better, EXCEPT not to interfere with her choice of how/what/when to eat. Woe be unto the mother who simply wanted to feed her child -- she had become the dreaded "food police!"

    I cannot express the anger I still have about the nearly 3 years we lost before we found someone who used a modified Maudsley approach. My daughter is now 18 and a freshman in a college about an hour's drive away. She still struggles and sees a therapist for her co-morbid anxiety and self-esteem issues, but, if you had told me in August 2009 that she would be able to go away to college just a year later, I would not have believed you.

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  10. Therapists who do psychodynamic* therapy don't only believe that parents cause EDs, they believe that our interactions with our parents as children cause lots of our problems. If you work with a therapist who has this outlook, they will 'blame' the parents because that is the model they use. This may be helpful in giving the patient something to hold onto -- this isn't your fault, a maladaptive environment at home led to this -- but it doesn't really help you eat, or deal with anxiety or depression. IMHO.

    I wish more therapists could see eating disorders like any other disease -- yes, you were exposed to radiation which may or may not have caused your cancer, but let's get rid of the cancer so that you can live your life to the fullest.
    * yes, this is a simplistic view of psychdynamic therapy...I know, I know!

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  11. I have to agree with Cathy and I always greatly respect her balanced viewpoint and assertive style of debate :)

    I can say that is not just the UK. From ALL the therapists I have been to I have NEVER heard that my parents were responsible and neither did they -- whether the professional was a social worker, psychiatrist, psychologist or nurse, parents were not blamed.

    My first hospitalization was on a general pediatric ward and the doctor was a general adolescent medicine specialist. The social worker I saw was also a general social worker. Even though these individuals may not have had the level of training in the teams I saw later, my parents were not blamed -- In fact they were given a book so they could understand the illness and part of the book was seperating the ED from me.

    My experiences after this have all been positive. There has never been any indication from professionals that parents cause EDs -- in treatment (adult treatment) family sessions were more about working with the family and sufferer to enhance communication strategies than they were about pointing subtle fingers.

    The current team of professionals I am working with now, have been with me since 2007 and I have gained 23lbs over that time. Again, there has never been any indication of parental blame and they are more likely to cite the work of Treasure, Vitousek and Kaye and talk about my "perfectionistic rigid brain" than they are to talk about socio-cultural issues and AN.

    I just wonder how many therapists acutally still BELIEVE parents cause EDs. . . This is not what I have experienced and its not what I have read in the literature unless that literature is from 1975 :P.

    A:)

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  12. @howdidigethere: I'm really sorry you were blamed for your child's ED. Yes, perhaps it IS because I'm in the UK, or maybe I've just seen different types of therapist (?). TBH, few of my therapists suggested blame by anyone. I was the one who chose to tell my most recent therapist (psychiatrist) about the peer bullying at the school that made me feel terrible about myself and the abuse I experienced (outside of my family), which also influenced my sense of self. A number of other factors made me vulnerable to developing AN and sticking in the behaviours (not the least starvation) as well. I'm glad your daughter is doing better now...

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  13. And Kathy I agree with you that good, effective therapy can be very, very helpful in gaining insight and self-understanding.
    Cognitive Behavioral Therapy helps people re-frame how they react in situations -- for my daughter this was an immense help!

    And you are right that for some families Maudsley just isn't going to work. Just like some types of chemo work for some people and not for others. The key is having clinicians who can communicate this to you, offer other suggestions, and do it without blame.

    I had one therapist tell me my cooking was partly to blame for my daughters ED......yeah. right.

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  14. Cathy, I'm sorry I spelled your name wrong!

    A:) it sounds like you have an amazing treatment team! Sadly, there are many therapists who still blame "family dynamics" and disregard the biological component.

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  15. Parent-blaming is certainly NOT universal, and these days it is rapidly becoming taboo to say it overtly. This is good.

    Unfortunately, like any prejudice and especially any prejudice that is embedded into practice, the words are changing without a full change of thinking and instinctual reaction.

    A lot of the blaming, sad to say, is actually coming FROM PARENTS. We have a tendency to blame our selves, our partners, and even the patient. We want a reason, a cause, an enemy. Sometimes we turn on the treatment professionals instead.

    Part of the parent movement to end this blaming is also to keep parents from the blame game.

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  16. Kathleen, I think you are so right - people aren't frightened of these new ideas because they are bad people or even particularly rigid thinkers, they are frightened because they are concerned that they may be throwing the baby they have worked with so hard for years out with the bath water of old ideas.

    It takes a LONG time to prove theories and develop therapies. Dare and Eisler developed their "Maudsley Method" decades ago and yet it is still being heralded as "new" and "controversial".

    Speaking from a land (as in small county, the picture in our whole nation is far more varied) where FBT is one of the tried and tested methods being challenged by newer "unproven" ideas (Tchanturia's CRT for one) I can see the point being made by those who are concerned about chasing after new ideas and losing the old ones, even if I do think that it displays some rigid thinking on their part (perhaps they could go for treatment with Tchanturia, or perhaps not!).

    Laura, changing ideas, changing structures, changing people is a marathon. Commercial interests and academic pride (on ALL sides) will get in the way all the time as well as inertia and fear. I'm so glad that you are in this for the long haul and finally seeing results as people get to the point where they can get to know you.

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  17. Yes I was told my daughter had her problems because I gave her "time-outs" when she was little.

    Our first therapist also said the Maudsley could work for some people but "not for our family" and she told my d that it wouldn't work for us either.

    But it turns out that the therapy team was what was separating our family and causing problems and once we had the FBT team, we were able to work together just fine, even though we were divorced parents. The first T also thought, based on what my daughter said, that my ex-h had an eating disorder, which meant he shouldn't take care of her. The FBT asked him some questions and told everyone very emphatically that my ex-h did NOT have an eating disorder and that my d should not worry about that at all. And that was the end of that problem which had been damning our family for months.

    Yes, the evidence shows that FBT doesn't work for everyone but I think that the evidence does show that it is the most effective therapy and it should be tried first, as long as parents are willing, without prejudgment about the family ahead of time. It's hard to beat the power of love parents have for their child and the ability of parents to put aside their own problems to help their child can't necessarily be predicted ahead of time.

    Neverloseheart

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  18. howdidigethere,

    Our daughter has suffered from anorexia for five plus years and has been in several treatment facilities.

    We have had the same experiences of being blamed by treatment providers for our daughter's anorexia.

    Some are more explicit about their 'blame' of us than others.

    It's sad, really.

    As is the incompetence of many of the treatment providers who have mishandled and misdiagnosed our daughter time and again.

    Thank God, times are changing as word gets out to these people that parents are no longer 'buying' their BS.

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  19. I think the parent-blaming has gone underground, more or less, much as Laura says. It's not said outright where you can deal with it, but it's implied in the underlying assumptions--much harder to ferret out and contradict.

    This applies to "AN is a choice" as well as to "It's the parents' fault."

    When a therapist says that parents don't cause EDs but then goes on to say (for example, I could give you a hundred) that role modeling of healthy eating habits plays a part in how EDs develop...does it mean that these parents didn't role model well enough?

    When she says that family dynamics often play a part in sustaining ED behaviors, does that mean that parents somehow were complicit in allowing their child to starve?

    Don't even get me started on 'individuation' and 'separation'! They go along with 'power struggle' and 'coping mechanism' in my list of Red Herring phrases in the ED dictionary. S and I are non-issues because ED prevents these normal adolescent processes from happening; they are not causes of EDs. Unfortunately, EDs tend to happen to adolescents, and therapists tend to get all knotted up about individuation and separation not happening in chronological time when in reality, they CAN'T happen until the child is recovered, and the best way to move on with development is to get the kid out of ED-land. When therapists talk about these things not happening, the underlying message to parents is this: you weren't doing a very good job, your child can't individuate/separate.

    As far as "AN is a choice" and how that can be so very subtle: My daughter met with her RD every week to learn about nutrition, metabolism, etc. We were in charge of feeding our child, yet the RD wouldn't meet with us. She saw her role as educating our daughter. Seemed like a good idea at the time--but the underlying assumption is that, given the right information, she was suddenly dope slap her forehead and go, "What was I thinking! My body NEEDS dietary fat!" It implies that AN is a choice. It's not. Instead, her education sessions didn't teach our daughter anything new, increased her anxiety, and made it HARDER to get dietary fats into her. It's the paradox of trying to fit rational thinking ("If she just understood what was happening...") into an irrational box.

    I think that looking at EDs as biological illnesses requires such a fundamental shift of thinking that it is very, very difficult to get your mind around if you have been operating under Old School ideas. Probably not fair, but I am suspicious of any professional who has 20 years' of ED experience.

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  20. Colleen. . .

    I'm pretty sure Walter Kaye has at least 20 years of experience :P . . .

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  21. Among all the subtle and not so subtle things that bothered me, was not being allowed to see/visit my 14 year old for 5 weeks when hospitalized. Nothing else says any louder to a parent...you are not needed and we need to separate you because its not healthy for your daughter to see you.

    This has to stop. I hope it has.

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  22. So glad to hear that Philly went well and that there are some of us around for the long haul! My new mantra: It's Evolution NOT a Revolution! We are making progress and beginning to come together. Excellent!!!!

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  23. I make exceptions for people like Saint Walter. O:-)

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