October 31, 2008
It's worth a... look:
What is it about eye wiggling that helps people recover from trauma?
Although I find the relationship between trauma and eating disorders tenuous, it is clear that the experience OF an eating disorder IS traumatic. Starving and being compelled to rid oneself of food - no less devastating (perhaps more) than if imposed by an outside person. And recovery? Being forced to endure the painful re-entry to one's own body and life in order to live; that's traumatic.
More tools in the toolbox - always a good thing.
October 30, 2008
Are you for profit or nonprofit? No real answer.
Who are your employees and volunteers and staff?
People who have been involved with eating disorder treatment. (The website has no real contact information or address or people named)
How do you decide how to match clients to treatment providers? Experience and perseverance.
So families call you seeking help? Well, we try to speak directly to the patient, but sometimes families call.
Have you heard of the Family-Based Maudsley approach? No.
This is a potentially DEADLY, CRIPPLING, FAMILY-DESTROYING illness which generally has its onset while the person is a minor or young adult. This is not Christmas shopping or picking a color for one's kitchen.
How can people be offering advice to people on treatment when they are not even aware of the basic science and recommendations in the area? Good intentions.
But here is the most troubling thing of all. This particular site isn't doing anything unusual. Lists of eating disorder specialists are not composed of people under some professional standard, following a validated protocol. You can list yourself as treating eating disorders without any sort of license, membership, or code of ethics. There is a lot of snake oil being sold alongside the real science-based and experienced clinicians.
And we, as parents, are perhaps the least likely to know this. We assume a care provider is an expert, has training, and there are professional standards behind recommendations.
Good intentions are not enough. Don't stake your child's life, your family, your other children, your marriage, your job, your finances, your retirement, your child's future health insurance, life insurance... on "We care."
October 29, 2008
Words from the Experts:
Parents Help Other Parents Cope with their Child’s Eating Disorder
Do you want to help researchers learn what families who have been affected by a child’s eating disorder need most?
Share your thoughts and ideas for helping parents to take care of themselves while coping with their child’s eating disorder. Graduate students from the University of North Carolina at Chapel Hill are conducting focus group discussions in October and November to learn about parents’ experiences and challenges associated with having a child with an eating disorder. The discussions will be held at Duke University Medical Center and will last approximately 1.5 hours. Information gathered during the discussions will be used to help develop messages encouraging parents to seek support and care for themselves and cope with the fear of their child’s disorder reemerging.
Each participant will receive a $10 gift card and refreshments as a token of appreciation.
If you are interested in learning more or signing up for a focus group, please email Nancy Zucker at firstname.lastname@example.org or call 919-684-0149, mention the parent discussion group and leave your name, number, and email. We will confirm your participation with a follow-up email and will inform you of the location, date and time. Thank you.
October 28, 2008
October 25, 2008
If we wanted to be blunt we could, considering the dismal recovery rates, ask whether successful treatment only works for a "small number of clinicians."
October 24, 2008
Or to find this comforting: Cortisol for Post-Traumatic Stress Disorder
And this intriguing: False memories can influence behavior
For the record, I believe we have a right to our true memories, but also relief from debilitating pain from those memories, and must be wary of how maleable memories may be.
October 23, 2008
Tragic anorexic Carole Patrick dies in York after 30-year struggle "York Coroner Donald Coverdale, recording a verdict of death by misadventure, said her death was the “unfortunate and unintended consequence of a medical condition arguably under her control”
... I feel so frustrated. Since I come at this illness believing the patient has a brain condition - one that they CAN NOT understand until they are nutritionally restored and the brain has healed - I see so many points along the line where misunderstanding of the illness was a tragic lost opportunity.
For the family watching the illness - who might have reacted differently if they had the right information early.
For the clinicians whose only avenue was to try to convince the patient to understand.
For the coroner, whose "misadventure" in interpretation simply perpetuates poor information.
For the public who are being induced to pity instead of act.
For the families who, reading this article, will not hear the words "brain disorder" or biology or genetics or TREATABLE ILLNESS even once.
For the employers who unknowingly enabled the illness.
For the grieving family who have been ill-served during and after.
But of course completely for this woman, who lived her shortened life in a living hell for 30 years - a hell she neither chose nor could choose to stop. Thirty years of suffering that could have been prevented, or stopped if the world outside her had the knowledge and the will to do so.
October 21, 2008
From DNA to the Dinner Table:
Couples and Families in the Treatment of Eating Disorders
This is the University of North Carolina's Fourth Annual Eating Disorders Conference, to be held at the Friday Center in Chapel Hill.
I would love to see you there - if you tell me you are coming I'll bring a Gold Fork pin for you!
"Speakers will cover critical topics such as couple-based therapy for anorexia nervosa, involving the family in treatment, parent training for childhood weight control, nutrition and brain chemistry in individuals with eating disorders, and dialectical behavior therapy for eating disorders."
October 20, 2008
October 19, 2008
"One year ago my d was "officially" diagnosed with (anorexia). She was 90 pounds at that time.
One year ago my life seemed to be crashing around me. Our family was falling apart.
One year ago we began seeing and old school therapist who just made things worse.
One year ago I never, ever would imagine that my daughter would be in recovery.
One year ago I blamed myself. I believed I was a bad mother. I wanted to run away and never look back.
One year ago, by the grace of God, I found this forum.
Here I am a year later. The mother of a recovering an d. Without Laura and all of you on the forum I would not be where I am today. This forum gave me straight forward advice. It guided mein re-feeding my daughter, and encouraged me to do "whatever ittakes" to getmy daughter help. You all told me that I was not to blame, that I was not a bad mother, that there was hope.
There were times when I didn't believe it. I did not think my d could recover. But you never gave up, and you all gave me such hope.
So a year later, my d is 22 pounds heavier. She is a happy person, dealing with the ups and downs of teenage life. She sees a family-based, maudsley trained therapist who is 2 hours from our home.Sheeats lunch and snacks on herown and has been maintaining her weight.
Are we out of the woods? Almost. I hate this illness but it has helped me realize what is important and what is not. I don't sweat the small stuff too much unless it involves food.
Anyway, I just wanted to say THANK YOU. I don't post as much but I am here. Reading, understanding, and still learning. God Bless all of you...Missy"
October 17, 2008
Weight-class issues keep Carano from reaching top
I'm not against athletics, but just as the word "healthy" is so often misused in practice, we should not allow athletics a pass or special permission to punish and abuse the bodies doing them. When the cheering ends, there is a person who has the rest of her or his life to live.
October 16, 2008
Genetics sheds light on mental illnesses offers one of the reasons why we're all confused: "This is just so much more complicated than anyone wanted it to be." And why the search has been so halting: "we didn't see it because we weren't looking."
"Psychiatry is all but unique in medicine in its utter lack of chemical or biological tests to determine what a patient has. Genetic research could lead to diagnostic assays to help determine whether, say, a troubled child suffers from bipolar disorder, impending schizophrenia, or garden-variety growing pains."
Just imagine for a moment: what if the first day one suspected an eating disorder or depression you could go to the doctor and have a test to diagnose it and begin immediate treatment based on the best knowledge available. Imagine if treatment recommendations were based on verified knowledge of how a particular population responds to a particular approach. So much suffering, the immense wasted suffering of delayed diagnosis and bumbled treatment could be alleviated.
(much thanks as always to my friend, Catherine, for bringing this and other great articles to me fresh off the - ink-less - presses)
October 15, 2008
Helping parents find each other, find good clinicians to work with, find information, and help others. I love knowing that when reporters contact me looking for families to interview, or researchers are looking for families for studies, I have a network of willing participants. Between the 1000+ mailing list I've developed over five years of networking, the readers of my blog, the membership of F.E.A.S.T., the readers of Around The Dinner Table - I feel like a librarian for a precious collection of wise and caring resources.
The New York Times was looking for patients and family members a few months ago for an interesting series on patients of various types. I put out the call through our Speaker's list and the response was great. The Patient Voices - Eating Disorders includes several in the F.E.A.S.T. community, and others I've had the honor to meet. As we get a diversity of voices out there, the public face of eating disorders will change.
THANK YOU to those who participated. Thank you to Karen Barrow for what interviewees described as "sensitivity" and "professionalism."
Thank you SO MUCH!
October 12, 2008
Not that there's anything wrong with that!
If humans had an equivalent metabolism, we'd need over 100,000 calories.
Next time our kids balk at dinner and repeat a conviction that they "can't" eat so much, or that they shouldn't need what they need, that dessert will make them fat, or ascribes some moral value to how many calories one needs...
Bring up the hummingbird.
Hearing this tidbit I turned to look at my husband who laughed: "I KNEW you would blog on that as soon as I saw it."
October 11, 2008
As the debate went back and forth on this blog, the Around the Dinner Table forum, and in my email about yesterday's exchange with Rachel I learned some things. I started the post in search of a reality check on, well, ME. Asking whether - and if so why - my words and record are taken as insensitive or diminishing. It was a self-centered request, and everyone duly ignored it and went on to the philosophical debates at hand: FBT/Maudsley/Biology/Parents do-don't cause EDs.
And then I finally got it: no matter how nice a person I am, no matter how sensitive, nuanced, balanced, positive I may see myself - my guess is that Rachel (and other people) feels insulted, minimized, trivialized not by me but by my beliefs about what causes and treats eating disorders.
Just by believing, and saying, that eating disorders are biologically based I am being insensitive to those who do not. My understanding of the mechanical function of nutrition in recovery denies the hard work of achieving it. My conviction that parents do not and can not cause an eating disorder in their child obviates the grievous wounds some parents DO inflict on their children.
I probably could devote my work from this day forward to repeating all my additional beliefs about this illness that don't include the above but it wouldn't help. And we could bat these issues about all day and get no clarity, because none of this is 'black and white.' There are no easy answers and as comforting as it might be to pretend otherwise NO ONE KNOWS what causes eating disorders and we AREN'T SURE what the best treatments are.
But most important: it doesn't matter. Because the end results are the same. We are all for recovery, full recovery. We all know that without full nutritional and behavioral restoration, people aren't recovered. We all agree that all people deserve stable, caring home environments and healthy relationships. We all know that recovery is INCREDIBLY hard work whatever the method. We agree that no one is perfect and that all relationships can be improved. No one excuses or discounts the impact of abuse or neglect or unkindness or insults.
Where is the disagreement?
Rachel, I do believe eating disorders are triggered by biology. But environment acts on biology - and the reverse. It takes psychological and cognitive WORK to recover. It took my daughter as much work and pain and heroism to fight her eating disorder as anyone. Her challenges were hers, and yours were unique to you. I admire you and her and all the wonderful recovered patients I'm honored to know.
Believing in a biological basis to the illness does not invalidate your work, your beliefs, your recovery story. Believing that most families whose kids have eating disorders are perfectly normal does not minimize that yours was perhaps not. You don't need an eating disorder history to deserve credit for working out your relationship with your mother and getting redress for your pain.
I respect and admire you. And I thank you for this exchange and the others we've had on this.
And for clarity's sake, I'll restate my beliefs. These should not be confused with what other parents believe, or what "Maudsley" is, or any other theoretical framework - just me:
- I believe eating disorders are a TREATABLE biologically based genetically transmitted brain disorder with environmental triggers - (e.g. dieting, overexercise, extreme stress, illness, metabolic/hormonal issues). Once triggered, the cognitions become self-perpetuating.
- I believe eating disorders temporarily control patients so that the person is unable to accurately perceive their physical state, interpersonal relations, and functioning.
- I believe restoring full nutrition and normal eating behaviors is the first and fundamental treatment - but in most cases adjunctive assistance or therapies are necessary to deal with co-morbid conditions and to deal with problems in the person's life that impede recovery or risk relapse.
- I believe families are the best resource in helping the patient regain control over the eating disorder and go on to healthy normal lives.
- I believe patients have to take on responsibility for their own health and continued recovery when they are ready to do so.
- I believe all families need a LOT of help learning to do the above, and some families need a LOT more help, but only in the rarest exceptions do families need to be separated in order for a patient to recover. And in those cases intervention was needed anyway.
October 10, 2008
Do you find me insensitive? Diminishing? Trivializing?
And if not, why does it seem that way?
... I really wish you would be more sensitive in this regard, Laura. I realize and understand your position that anorexia is entirely a brain disease, and I concede that that may be true for many people. However, there are people like me for whom our disorders are, in part, a product of emotional instability and therefore are "not really about food."
It really hurts me as a survivor of anorexia and bulimia turned educator and activist to constantly see my personal experiences diminished and trivialized and that is one of the prime reasons I don't read your blog more.
Eating disorders are all about the black/white thinking. Surely, there should also exist shades of gray in the ways we go about combating eating disorders.
Laura Collins said...
I'm surprised and sad you took my post that way. And I think you may have not understood what I was saying - or I inadequately expressed it - because I don't disagree with what you've said.
My point was to say that people are confused about the BED connection because they (incorrectly)think BED *IS* just about food but (incorrectly) think AN and BN are not. Both are wrong.
As you know I believe eating disorders are a brain disorder - brought about by both biological and environmental factors. If you aren't born with the genes for an ED you are not going to develop one. If you are born with those predisposing traits/genes but don't experience those environmental triggers (dieting, overexercise, illness, extreme stress, hormonal problems...etc.) you may never experience one.
My position is that without addressing the food part, the brain can't recover enough to do the thinking part. But I've never believed or said it was "ONLY about the food."
I don't think my daughter, also a survivor, or other survivors I know, think I diminish or trivialize her illness or anyone else's.
Being a brain disorder doesn't minimize the importance of environment or of the WORK of recovery, to my mind - it actually EMPHASIZES the importance of how society and loved ones respond to the person. (Otherwise I'd just be arguing for lifetime feeding tubes.) That's what all my work is about: changing the environment around the patient - beginning with but not exclusively the medical restoration. Getting rid of the blame and the anger and the shame and the wrong answers to the wrong questions. And if there are problems (and most of us have them) fixing them!
I may lean one way in my emphasis, but I'm not black/white in my understanding or my record on this.
I'm also a foster parent, and used to work at a rape/crisis center - I'm not naive or discounting the incidence or significance of bad parents and bad people. I'm simply a believer in getting people help for THEIR lives and unique circumstances - whatever those are. An eating disorder isn't a sign of bad things in that life - and a horrible life doesn't only deserve help when the person develops a mental illness.
I wonder if my emphasis seems black and white to you because that is YOUR frame on me. Because I know it isn't mine of yours. I don't find your work and mine as mutually exclusive, or in conflict - and I'm not sure why you do.
As for hurt, Rachel. Please keep in mind how much it hurts to have my experience as a parent and those of the vast majority of parents of eating disorder patients be treated in the media and in eating disorder literature and in therapist's offices as automatically worthy of blame, shame, and guilt. And that hurt makes helping our loved ones that much harder. That is why I do the work I do.
I apologize for hurting you. I really do. I respect you, and your work.
October 9, 2008
Part of the reluctance of the ED world to do this is, I'm quite sure, based on prejudices about weight - putting people terrified of weight gain in the same category as people whose illness sometimes creates weight gain. Part of this is that BED hasn't been included in diagnostic ED categories until more recently - and not completely. Then there is the fact that most people still think of eating disorders as "not really about food," and there being some virtue and self-control being attached to eating and digesting less than one needs (untrue). I think it is also very common to confuse BED with "obesity" and the reverse.
The reasons BED is being incorporated more often now? I think people are realizing that all of these behaviors are rooted in the brain, and all involve restrictive eating (sometimes leading to bingeing, sometimes leading to purging and sometimes not). Another reason is practical and tactical: the "obesity epidemic" mania is bringing funding and attention to the ED world in a way that anorexia and bulimia just couldn't draw.
I will confess to being slow to incorporate BED into my own use of the phrase "eating disorders." I think I've been so eager to get people to pay attention to anorexia and bulimia - ANY attention - that I didn't want to complicate the message with all the ideological baggage out there about fat.
Well, here's an organization ready to address this slow and tentative movement toward integrating all eating disorders:
BEDA - Binge Eating Disorder Association, Inc.
I'm ready to raise my consciousness and give some serious attention to the connection between all eating disorders. Thank you, BEDA, for pushing us all toward integration and clarity!
October 8, 2008
The word choice alerts you to something important. Something that came up in the excellent overview of research given by Dr. Lock and Dr. Kaye at the recent NEDA conference in Austin: "In contrast to studies of adults, randomized, controlled trials for anorexia nervosa family studies have dropout rates of 10% to 20%" For adult studies the average dropout rate is 40%.
When people talk about the fact there is is so little research to support various treatment approaches, consider it in context. There is little research AT ALL.
Eating disorders, especially anorexia, are anosognosic and egosyntonic - the victim understands only a fraction of what is happening and what they do understand falsely seems to be going their way. Adult patients resist beginning treatment, not to mention being randomized into studies, and they also drop out of treatment not because they don't need it, but because it is a symptom of the illness to do so.
The difference, when family is involved in the treatment, is you have people who are not living under the dictates of the illness able to keep the process going. Children and adolescents (and dependent adults) don't have a choice if their parents are on board: appointments will be kept, recommendations will be heard.
This also makes the very optimistic findings on Family-Based Maudsley treatment more significant. And adds another perplexity: why, when the Journal of Clinical Child & Adolescent Psychology makes it very clear: "At this time, the evidence base is strongest for the Maudsley model of family therapy for anorexia nervosa." that most families are neither offered FBT/M nor are we told it exists.
October 7, 2008
“I'm thankful for our therapist who knew that (my daughter) needed to go to the hospital. If we had listened to the doctors, even one in our own family who said it seemed extreme to admit her, we would be in a very different situation now. I guess she didn't have enough of the physical symptoms YET, she only had low bp, dizziness, cold all the time, tingling hands, jaundice, losing hair on her head, but growing it on her back, and had lost over 30 lbs., I guess she needed to lose a little more. I don't think doctors look at the mental state of an anorexic. (She) would climb out on the roof when it was time to eat, she ran away from home and was gone for almost 3 hours, and said she would rather die than eat.”
I wish it was the first time I heard this kind of thing, but I hear similar stuff all the time. Patients go from outpatient treatment where no one is terribly alarmed to emergency rooms and extended hospitalization - overnight. Mental symptoms the parents report are downplayed.
There is too little understanding of how the body and brain compensate for malnutrition until - suddenly - it can't. We need a zero tolerance attitude toward malnutrition at any level. Why do we think food is optional? Why don't we acknowledge that malnutrition makes you sick?
And we need to listen to parents, often the first to know something is wrong.
October 6, 2008
Subject: life insurance
"Like many of you, we had difficulty getting our health ins company to pay for my d's treatment. They didn't seem to take her illness seriously. However, we have learned the life ins company takes it very seriously. Our agent recently encouraged us to take out small whole life policies for our kids. He said it is good to get these policies while the kids are still healthy ( ha!) When the underwriter saw that my d had previously been diagnosed with an ED, coverage was immediately denied. Too much of a risk.
So, life ins won't provide coverage because this is a life threatening illness. AND health ins thinks the trmt is excessive and limits residential trmt to something like 30 days.So frustrating, isn't it?"
Not just frustrating. Telling. And obscene.
October 5, 2008
Are you the parent of a child who has received inpatient treatment for Anorexia Nervosa?
If so, we’d like to talk to you about your experience. As research psychologists, we are interested in how a child’s eating disorder diagnosis affects the parents and family – including coping reactions, relationships, and marital satisfaction. Few medical or psychological resources are available to support parents who may face their own challenges with respect to the diagnosis of and treatment for their child’s Anorexia. We hope our research findings will contribute to enhanced understanding of how a child’s illness affects parents and family.
If your child, age 11-17, has received or is currently receiving inpatient treatment for Anorexia Nervosa, we invite you to participate in this important study. Participation will include:
*A confidential and supportive phone interview, scheduled at your convenience, with a trained psychology doctoral student
*Access to our findings, at the end of our study
*Helping other parents in the same situation, by sharing your story with us
Please contact Dr. Merle Keitel at email@example.com or (212) 636-6468 for information.
NOTE: This research study has received IRB (Institutional Review Board) approval from Fordham University and Princeton HealthCare System and researchers will adhere to the American Psychological Association’s Code of Ethics. Primary investigators for this study are Merle A. Keitel, Ph.D., Professor of Counseling Psychology, Fordham University, and Melinda Parisi, Ph.D., Program Director, Eating Disorders Program, University Medical Center at Princeton.
October 4, 2008
An end to discriminating against brain problems in healthcare:
This is a wonderful first step, a long-fought one, in improving both treatment and society's understanding of brain function.
October 3, 2008
Parents of eating disorder patients see their children in pain, extreme distress, confusion, violence, self-harm. We are often separated from our children physically, not to mention emotionally.
Add to this the fact that good parents feel responsible for their kids, and responsible for failing to protect their children from distress, and sometimes are even still told we are complicit in creating the eating disorder... it is a perfect storm.
I have not yet met the parent who walked away unburdened and unmarked after a child's recovery. The falling apart on descent is PART of the process. Anger, depression, unrelenting anxiety, these are normal AFTERWARD, and for a while. Sometimes we need counseling, sometimes we need drugs, and everyone needs time.
My daughter initially fell ill in 2002, recovered that year, and except for a brief relapse of thoughts and behaviors a few years later has been quite healthy and well. She's an independent adult, thriving, we have a great relationship, But I still suffer from the PTSD of having her ill.
Negative symptoms: much easier to anger or anxiety, medical after-effects. Positive symptoms: dogged inability to let go of the issue, compulsion to aid families newer to the ED world.
I don't know that we can avoid this. Of COURSE parents are traumatized by this illness. I really wish we all would acknowledge it and care for each other with this in mind. "Move on" is not helpful. "She's fine now" is not welcome. No one says this about breast cancer survivors and parents of children who've had serious surgeries. "I hear you" is good. "Good for you." that's helpful. "Tell me about it again," now that's love!
October 2, 2008
It is so nice that with the Internet we can learn so much, especially with the kindness of those who provide mini Mapquests of the terrain:
Treatment Notes: Assessment of Eating Disorders
October 1, 2008
The National Association for Mental Illness has done a super job of defining both of these principles - a great tool for parents!