Thursday, March 20, 2008

Dangerous words

I know of people who have recovered from eating disorders at Remuda Ranch (don't you love the name? don't forget your 10-gallon hat, little lady). But I am no fan of places like Remuda and Renfrew, big profit-making chains of residential treatment programs. They're a real mishmosh of treatments, their long-terms statistics are crappy, and, most of all, they imply through their very existence that families are a liability, not an asset, when it comes to recovering from an eating disorder.

Now they've pretty much come out and said so.

And I'm glad. You know why? Because now at least it's out on the table. I'd much rather have someone say it out loud--Families cause eating disorders--than get the knowing looks, the condescending body language, the unspoken judgment.

The stigma of eating disorders is vile and deep. It kills people as surely as starvation does.

The first step to fighting stigma? Get it out into the open. See it for what it is. Name it. Yank it out of the closet of politeness and into the hard light of reality.

And then stomp the shit out of it.

35 comments:

AnnieMcPhee said...

This one needs some serious stompin' too. You do it, Harriet, I know you can.

Y'know, my favorite singer as a child, Lena Zavaroni, there's a whole documentary (60 minutes of it) on youtube about her, and what struck me was that the only time she DID eat and gain weight was when her family was taking care of her. It was leaving her family (for fame) and living with her manager, who told the 10 year old she was plump and shouldn't eat the rich desserts, that set off her anorexia in the first place. But her family was able to help her. She ultimately died because of some very unethical surgery doctors performed on her still emaciated body - deep brain stimulation or something. She wasn't "better" yet - just *getting* better, so all the mental effects were still with her. I doubt she was up to goal weight even. Gah.

I believe in family-based help and have since before I found out there was a name for it.

Rachel said...

Families cause eating disorders? Is this what you're claiming this press release is stating or implying?

Oh, come ON Harriet. Are you being purposely obtuse? Here is what is actually stated in the release:

“Families are very much a part of the puzzle of eating disorders. There are biological, psychological, cultural, and family reasons why a person has an eating disorder.”

The article goes on to list characteristics of families of people with eating disorders, not a list pointing accusing fingers of blame on any one family member or dynamic.

I am glad that you are an awesome parent who helped guide her daughter out of eating disorder hell. I'm glad that you appear to have a normal, supportive and healthy family dynamic. But not everyone with an eating disorder shares in your good fortune, and for some people, family experiences and destructive familial relationships do play a role - note, not the exact cause - of the development of one's eating disorder. Families also play a large, if not crucial, role in the recovery of an eating disorder.

Please don't discount and diminish the very real and valid experiences of so many - myself included - for whom dysfunctional family relationships do play a contributing role in eating disorder development just because it didn't play an equal or similar role in your daughter developing anorexia.

sso said...

I've been to Renfrew in Philadelphia twice and found it to be remarkably "not all it's cracked up to be." There were too many patients, not enough staff, and enough freedom for rampant eating disordered behaviors. I also went to another facility in Philly, which I found to be even worse. However, I had a very positive experience in a fairly small eating disorders unit at the Medical Center of Princeton in Princeton, NJ. The unit was very supportive and caring, and really a conducive environment for recovery. I've actually been contemplating returning there towards the end of the summer, when I have a break in classes.

Family based care really wasn't an option in my case, as mom was really kind of busy trying to keep my dad from killing her and/or us. And I do mean that literally. I was also already 19 years old at the height of my illness, and from what I understand, family based care seems to have the best effect on adolescents. At 5'4" and only 60 lbs, it was medically unsafe for me to be anywhere other than a hospital environment.

You know, my initial reaction to family based care was, "oh, this would never work." And I still believe in my case, it wouldn't have. But it clearly had the intended effect for your daughter, and for many others, and that's too valuable to dismiss out of hand. Now that I think about it, the premise as i understand it is similar to inpatient care - you turn control of your eating over to someone else, until you can show that you can resume constrol in a healthy manner. For a child or young adolescent, it does seem to make sense for that figure of authority to be a parent. That also resolves reservations I've had about very young patients in treatment centers. Although children's programs seem to be cropping up, a lot of facilities have cutoff ages at 14 or 16. With EDs surfacing younger and younger, finding a treatment center to accept a very young patient may not even be feasible.

Remuda does have a children's program (and an adolescent program). My friend's daughter went there at 13 and turned 14 while she was there. She and did not find it particularly helpful, and they are *very* quick to tube-feed. It seems like almost everyone there has an NG tube, which I'm not so sure is the best course of action.

AnnieMcPhee said...

Rachel it also said, "reports families often play a major part in both the development and healing of eating disorders."

Maybe one of the reasons the Maudsley approach has such a high success rate (and these centers do not) is because the "send your kid off to be treated apart from you" places tend to get the kids whose families *did* play a part in creating the disordered eating? I couldn't say, but since the Maudsley approach does have such a high success rate, there's something going on there. And I think they're paying lip service to the idea that the family can even help, too - considering they let them visit for one week in the middle of the stay as opposed to being an integral part of the process.

hotsauce said...

interesting to read what remuda says there, because my family certainly played a role in the development of my eating disorder. the list did include a few things that applied to me: my dad's "excessive self-discipline" being the big one, and he was/is emotionally distant. (although he's supportive and loves me to death, i feel like i can't really have a deep conversation with him about anything.) and he has heart disease, so that counts as "fathers who are chronically ill."

but how then do you explain why my brother, the one who caught the shit for his weight, study habits, achievement, social life, etc., is freakishly well adjusted while his big sister (me), the one who has always been thin, always done reasonably well in school, well in her career, and has always been socially active--how do you explain why i was the one who turned out so whacked?

personality. i've always been hyper-competitive and unsure of myself, and someone who looks toward others for verification (am working on fixing all of these things), while my brother is none of those things and never has been. that's why i hate stuff like this list, because, yeah, family plays a part, often a big part, but i really don't think that it's the biggest part. saying that it is, or even that it might be, puts the "blame" (if you want to call it that) on the wrong party, and as a result may allow ED people to deny ownership of their problems.

i did that for a while ("my dad is the cause of all of my problems!!") but you know what? no, he wasn't. i did what i did to myself, and there were certainly influences, but i was the one who first put my finger down my throat and i can't go blaming daddy for it. taking ownership is not the same as blaming oneself. you can do the first without doing the second, but i feel like people aren't encouraged to do so because the delineation is not made.

but since they're talking about bad-bad families, don't you think it's interesting here that "Mother's dieting and expressions of body dissatisfaction" isn't on the list? that strikes me as something that's an oft cited factor, and i always thought that the M.O. was to call out mom for instilling body hatred in her kids. is it more en vogue these days to blame dads?

HG said...

I'm looking at that list, and thinking, "How many people grow up *without* having one of those problems in their family?" I think pretty much everybody I know, people with clean bills of mental health included, could identify at least one of those problems if they went to a few sessions with a therapist.

Shinobi said...

My college friend who had anorexia would relapse every time she went home to visit her family. Her school chums finally "organized" and started inviting her home with us for breaks so she wouldn't go home and stop eating again.

Some families help, and some families hurt, it's complicated, and I think that's what really needs to be recognized.

Also, HG, I don't think that's necessarily true. The only thing I even come close to is Chronically Ill Mother, and she wasn't THAT ill, and she's my mother. I'm mentally healthy, except for maybe some mild anxiety issues. And I'm sure if I sat down with a therapist they could eventually convince me that my father was really distant, or that their expectations of me were too high, or that time I had to stop my mom getting out of the car in the middle of an intersection caused my mild anxiety issues. But that isn't really true, it would be the therapists construction. I

Harriet said...

Hotsauce,
You DIDN'T "do it" to yourself. You had an illness. It might have been pneumonia, or cancer, or reflux. Instead it was an eating disorder. You are not to blame. Neither, IMO, is your family.

As HG points out, who wouldn't relate to some of the characteristics on that list? And you know, it's the same damn list they used to trot out to "explain" why some children were schizophrenic or autistic or homosexual. It's just as full of shit now as it was in those cases.

Families aren't perfect. Some parents say and do really really awful things. Believe me, I know this from personal experience. But as hotsauce points out, if that caused eating disorders, why don't more children get them? Hell, why aren't the rates for anorexia and bulimia in the 40 percent range instead of the single digits?

Places like Remuda have a single end in mind: profit. They exist to turn a profit. Period. They can load it up with a lot of self-serving gobbledy-gook but that's what it amounts to. This is not to say they don't help some people. They can buy some time for some people. They can keep people alive. But very rarely do they truly cure an eating disorder, and even then I think it's probably happenstance more than not.

We want our experiences to have meaning, Rachel, and that means that we have a wired-in tendency to look back on our experience and give it a narrative construction. This came before that, therefore this caused that. But you're into science; you should understand that correlation is not causality. Just because your parents were harsh or critical does not mean they caused your eating problems. (By "you" I mean "one," as I obviously am not commenting on your particular family situation.)

I've written a fair amount about child care, too, as it happens, and the same caveats apply. I strongly believe there is no place for profit in a system that should be caring for people. The risks, as evidenced by places like Remuda, are too great.

Piffle said...

I echo the thought of other posters, whose family doesn't have something on that list? I'm not ED, but my father died when I was three--can't get more distant than that! It's just too vague.

I would think that each approach would work for some people and not for others. Which is what we are seeing in the comments here.

However, I thought the studies on the family-based results showed that they were more likely to work? That may be partly because a family that chooses that approach is already more supportive and helpful than ones that don't choose such. Kudos to the friends who organized to help keep their friend away from the family that triggered relapses too; they were her support through the disease, clearly. It makes sense to me that a group of people who really care, whether family or good friends, would be more effective than professionals who simply can't care as much about each individual.

There's a genetic component to ED as well:

http://www.sciencedaily.com/releases/2007/05/070511150158.htm

And I wonder if some families have parents who also have ED, which could trigger the disorder in the kids? Like trying to quit smoking in a smoking household?

sso said...

"if that caused eating disorders, why don't more children get them?"

since when do all human beings react in the same way to the same stimuli? let's take an extreme stimulus - sexual abuse. i work within the criminal justice system, so i've had a good deal of experience dealing with both the abused and the abusers. some victims are able to overcome their past and go on to lead productive, fulfilling lives. One woman went on to be a sex crimes prosecutor, and has written books and given numerous speeches on the topic. Others turn to drug abuse to numb their pain. I know of several who have developed severe eating disorders. And still others who go on to become abusers themselves.

As with any other stimulus, how you react depends on far more than the stimulus itself. Some people's personalities are more given to eating disorders (i find a lot of ED patients are highly driven and perfectionistic). Some people have greater support systems, whether through friends, other family members, teachers, or elsewhere. Some people engage in activities that already value thinness I did both dance and gymnastics competitively, for example.

I think it is also shortsighted to say, well everyone has experience with some of these factors, so that can't be the case. Personality and other things aside, are you giving any thought to the severity and duration of each factor, or how many are operating concurrently?

Problems with my family may not have CAUSED my anorexia, but it was absolutely a contributing factor.

Anonymous said...

I have heard mixed reviews on Remuda--spoke to one parent at my church who sent their daughter there and all she learned was how to hide it better. this family has had four children dealing with this issue.;( major family issues) We are in it right now--I have given up reading information-I am not and never have been a perfect parent. I do the best I can do. I love my daughter and will fight for her but she has to want to get better. We are surrounded by people who are praying for her and us. I think you just can't say it is one thing over another that causes it. The goal needs to be to help them combat the lies that the disease feeds them. And me feeling guilty about something I may or may not have done; doesn't help that.

sso said...

"Maybe one of the reasons the Maudsley approach has such a high success rate (and these centers do not) is because the "send your kid off to be treated apart from you" places tend to get the kids whose families *did* play a part in creating the disordered eating?"

I absolutely agree with this. If a patient was able to successfully relinquish control of their eating to their parents, that indicates to me that the family probably was not a significant contributing factor to the eating disorder. I think it's important to remember that there is no set "recipe" for EDs, any more than there are for substance abuse, self-injury, or other maladaptive coping mechanisms.

In my case, my father, besides being otherwise emotionally, verbally, and at times sexually abusive, tried to control every aspect of my life. Nothing I *ever* did was sufficient for him. At fourteen years old, I got a 1500 on the PSAT. I had a perfect 800 verbal score, and was fairly pleased with this. When I got home, the first thing my father said was, "what are you so happy about? perfect is a 1600 - where are the other 100 points?" At one point he told me it didn't matter that I (at age 15) didn't do drugs, wasn't having sex, was a straight A student...because I wanted to wear blue nail polish. He told me I was everything he never wanted in a daughter, and that if I chose to paint my nails blue, i might as well be smoking, drinking, doing drugs, and getting pregnant. It would be my fault if I got raped, because I wouldn't let him pick out my clothing for me. I was an idiot because when I applied to a medical science program for high school, because I chose an essay topic he disliked. (Incidentally, I was accepted and graduated 3rd in the class, and got a full merit scholarship for college.)

You can bet he TRIED to take charge of my eating when I became ill. The harder he tried, the more I resisted, to the point where even if I was planning to eat something, if he ordered me to eat it, I simply refused. On one occasion, he punched me squarely in the face after I refused, leaving a bruise in the shape of my glasses. I'm sure your daughter resisted your attempts to refeed her at least once, but did you ever punch her?

When it finally penetrated that he could not force me to eat, he then decided that he would teach me how to make myself throw up, so at least I would eat. It bothered him so much that he couldn't force me to do what he wanted, that he was willing to teach me how to harm myself, simply so he could have his way. (Luckily mom forbade him to do this.) He also tried to prevent me from seeking treatment, since he thought having a history of psychotherapy would somehow harm me in the future. If you honestly believe family-based treatment would have worked in this case, I'll have to say that you are out of your mind.

Now, I have a younger sister who grew up in the same environment, and I believe someone above asked why their sibling did not develop an ED as well. My sister and I have different personalities, to start with. She is far more social than I am, and she had a strong support network amongst friends, classmates, and even a couple teachers. Another factor, I think, is that I continually stepped in between her and my father to shield her from abuse. In some cases this was figurative, and in others it was absolutely literal - physically getting in between them to buy her time to get to her room and lock the door before he came pounding up the stairs after her. And, she saw what happened to me. At 22 years old, and despite spending much of her adolescence visiting her emaciated sister in various ED facilities, she has never been on a diet. She eats in what I believe would be called intuitive eating, as does our mother...which both of them have done their entire lives. A few months ago, my sister admitted to me that she was actually afraid of ever going on a diet, as we are so similar in other regards, that she thought if she dieted, she might "end up like me."

Harriet said...

sso,

I didn't say why doesn't every child have an eating disorder--but why don't more of them? Of course everyone responds differently to the same stimuli. It's what makes us interesting and unique and not little lab experiments that always give the same results. But think about it logically: given how many fucked-up families there are, if fucked-up families caused e.d.s, there would certainly be higher incidence rates of e.d.s.

Your family history sounds terribly difficult and violent and extreme, and I am very sorry you had to live through that. You must be a fighter, and I have nothing but respect for you for not just surviving but learning to thrive after such an upbringing.

True Maudsley treatment is NEVER abusive. It is NOT force-feeding. It is NOT about controlling a child's life in any meaningful way. It is a temporary taking back of the responsibility for feeding while the child or teen is acutely ill and cannot make such choices for herself. That's Phase 1 of Maudsley, as I've written about before. Phase 2 is transferring that responsibility back to the adolescent. Phase 3 is resuming normal adolescent development--what *doesn't* happen when you're busy dealing with an eating disorder.

I never said family-based treatment would work in every single case. No one claims that about any treatment method. What the studies support, and what I believe, is that of all the treatment protocols out there, this one has by far the best success rates for adolescents.

Stanford University just expanded its FBT program to include older adolescents up to 21. There are some studies coming down the pike on that age group. I personally know more than a few kids of 18-25 who have recovered through FBT. That gives me hope.

Bottom line for me: Eating disorders are a trap. The quicker you get out of them an on your way, the better your chance for a happy healthy life. And that's what everyone deserves.

I thank God every day we found Maudsley and used it, because my daughter, who is now 17, is happy, and healthy, and has the life I have always wanted for her: her life. Believe me, we're nothing special as a family. We have plenty of flaws and issues. I'm sure a family therapist would find lots to work on in our family. If we can do it, lots of others can do it too. I want to support them.

That is all.

mary said...

With respect to all those who have come from abusive homes I want to point out again, along with Harriet, that the approach that treats this disease as parent caused risks costing YOU much time waiting for proper treatment. We all know that there are some really crummy families out there.Don't let the analysis of your life cost you the right to treatment that gives your body good nourishment FIRSTLY.
My niece with bulimia has a mom who also has an ED. This mother has spoken to young women in my presence about their weight and I said what I could at the time to correct her "stupid" beliefs and opinions. She was wrong. I know that some parents push their children to lose weight and contribute to this disease encouraging it on. Really sick, we know. I wish there was a way to protect you all from such ignorance. I beg you to walk away and create your own life.
My daughter had an ED too. One of the things I wanted most for her was to be a strong an independent young woman. I raised her well. Recovery hurts though and because of the poison chemicals from lack of nutrition life was very sad until she got better. She saw the world through muddied eyes as even being underweight will cause depression, just as weighing too much for our individual body might do. ED's go both ways. As she got better one of the things she did was learn to recall all that was good in her life. There were some really happy times that the ED was hiding, she simply had to uncover them.
All I can say is that you need to listen to the voices that are telling you that "it's okay to be who you are and eat as you know your body needs," like Harriet, myself, and the others who have a clue what it's going to take. Take whatever help you can to recover. We aren't your birth parents but we are people who can SEE clearly what you need to do. We all need to honor ourselves and it's a rare person who lives a charmed life. We aren't always so strong, even with our strong keyboards, though when push comes to shove we will get up and fight for you, with you, and because of you. Know you've never been alone! Whatever happened in your life before ED, get better ANYWAY. It's your life! Kick ass. Please.

AnnieMcPhee said...

I think this comment deserves real emphasis: "As HG points out, who wouldn't relate to some of the characteristics on that list? And you know, it's the same damn list they used to trot out to "explain" why some children were schizophrenic or autistic or homosexual. It's just as full of shit now as it was in those cases."

Parents have been thus blamed for everything from left-handedness to retardation to...well everything. Having seen it from both sides now, I feel differently than I did when I was the kid in the shitty home.

Anyway, I thought that comment bore some definite emphasis. :)

Anonymous said...

Just to clarify my earlier comments-we are using the Maudsley approach, we (my husband and I)are in phase one-refeeding. We went to the nutrtionist today and she upped
the food. My daughter actually dealt pretty well with it. I think that you are right-if you have a pretty good relationship with your kid, this will work. I have to believe that she will recover! I miss my happy kid and now that her moods are improving because she is eating, I ask myself how did I not see it. We caught it relatively early. She has always been slender and she just did little things at first. but when your not big (can't think of any other word) it doesn't take much to spiral quickly. thankfully we found the right doctors and basically told her this is not an option.

Harriet said...

Anonymous,

Good for you! I'm happy that your daughter is recovering. That's fantastic.

I want to second Mary's comments. Kick ass for recovery! That should be on a T-shirt.

Anonymous said...

I owe alot to you--read your article about Kitty and got educated--only that can be a problem because then you wonder what you did. I am getting over that. Still get upset when they ask me to leave the room--really working on that!! My hubby keeps reminding me it is not about me right now. went to the nutirionist today and she is great--really working with our "sweetpea" to help her not to feel so overwhelmed by all this. I love your blog--it helps me--I get angry know when I watch tv and read magazines...thanks for brining awareness up.

sso said...

I don't believe I've ever said that bad families CAUSE eating disorders, just that they certainly can be a contributing factor. Why don't more kids have EDs? Again, I repeat, we don't all react to things in the same way. I don't think everyone is necessarily predisposed to eating problems. In my case, being both a dancer and a gymnast, having a particular type of personality, being expected to be thin as someone who is (half) Asian, also played a role. Perhaps I would have turned to drugs or alcohol if my circumstances had been different. I don't know.

I'm not playing the game of "blame the parents," and I never did. Identifying abuse and violence in the home as something that needs to be addressed in therapy so that I can find non-destructive ways of coping with it, is hardly playing "blame the parents." It was simply giving me tools I needed to survive in the family I was dealt. It did not delay my getting treatment; I started seeing an adolescent medicine doctor who specialized in EDs within months of getting sick.

"Bottom line for me: Eating disorders are a trap. The quicker you get out of them an on your way, the better your chance for a happy healthy life."

This I absolutely agree with. I've always felt that the sooner you get out, the better your chances of recovery. I'm going on 12 years with this, and it's not something I'd wish upon my worst enemy. Your daughter is very fortunate indeed, and I'm glad you were able to guide her out of this so quickly, and that you share your story with others. People need to have as much information about treatment options as possible, if they're to find the one that may work for them.

Harriet said...

sso,
I don't think identifying abuse and violence in the home is blaming parents. I think it's what you needed to do for yourself, period. I'm glad you were able to do it. And I'm glad you were able to get treatment quickly.

hotsauce said...

Harriet, I didn't mean I "did" it to myself, like willingly and purposely, that I woke up when I was 19 and thought, hey, I think I'll turn to bulimia as a coping mechanism. I could have been more clear in what I meant by that. I believe that there are certain traits a person is just kind of born with, and depending on how s/he is raised, things can turn out certain ways. I think I'm pretty much hardwired to be fairly anxious, to be drawn to sitting and pondering the world for long periods of time, to expecting a lot of myself, etc. Legend has it that I was all three of those things as a toddler even. Then, due to the fact that I grew up in a food crazy household and didn't see a whole lot of good modeling of coping skills from my parents, I gravitated toward my ED. If it hadn't been food, it probably would have been something else. I really think that is just how I am, but that's not to say that it can't be overcome or that it was my fault or whatnot.

Like I said, too, I see a difference between taking ownership and saying "I got into this, now I can get out" vs. blaming myself for it. And I don't like the idea of thinking that this "just happened" and that I had nothing to do with it, because, for me, if I think like that I feel like a victim and I don't like feeling that way. That's just my view of my own situation, though, and I'm sure there are as many beliefs on it as there are people with this problem.

hotsauce said...

P.S., wanted to add that I'm not saying that a young girl should be told to pull herself up by her own bootstraps. I sort of took that course with myself, but I was older and captain of my own ship.

Anonymous said...

For a different perspective, I hope you will read my comment (Hopeful) on the thread I started on Laura's Parents forum entitled "Clearing the Air".

Anonymous said...

Hopeful,

Why bother to explain yourself to a bunch of anonymous posters on the internet saying that your daughter was "not treatable using a family-based modality" anyway? Treatment choices are yours to make, aren't they? Surely you are aware that FBT is not the dominant treatment in the US. If you give a lot of weight to the opinions of others that might be of some comfort to you.

I dislike the forum a lot myself, though for other reasons. I just avoid it.

Anonymous said...

I hope that people do not judge FBT by the content of the forum. There are a handful of people with kids in different situations expressing their own opinions and frustrations. Many are not well informed.

Harriet said...

I would agree with the last anonymous. The forum is a useful tool for parents but it doesn't represent FBT in any meaningful way.

To Hopeful--
I hope for you that your good experience with Remuda sticks. I'm glad it was helpful to you. I think you're right to point out that anorexia and bulimia are two different diseases. Are you aware of the recent study on FBT with bulimia? It had excellent results. But I suspect that because that research is very new, very few clinicians out there actually know how to do effective FBT with a bulimic patient. It sounds like you didn't get effective treatment, and for that I am sorry.

I would ask, though, that you not dismiss FBT out of hand because it did not cure your daughter. The stats and the research on it for both AN and BN are still excellent. And while it may not be the mainstream treatment in the U.S. for eating disorders today, I think it will be 10 years from now. And I think that will be an improvement over what we've got now.

No one treatment works for everyone. What you described about Remuda would have been a disaster for our family. But I'm glad it worked for your daughter.

Rachel said...

But as hotsauce points out, if that caused eating disorders, why don't more children get them?

I believe - and the evidence shows - there exists a strong genetic component in eating disorders. But this is not to say that there exists a specific anorexia or bulimia gene that is destined to flare at any given point. Rather, one possesses the genetic predisposition to develop traits that align themselves perfectly with an eating disorder. And since we do not live in a vacuum, the right environmental, social and familial clime acts as the trigger in eating disorder development and directly affects why a person would choose to use food - and not alcohol, drugs, sports or academics - to deal with emotional issues or as a way of coping.

We want our experiences to have meaning, Rachel, and that means that we have a wired-in tendency to look back on our experience and give it a narrative construction. This came before that, therefore this caused that. But you're into science; you should understand that correlation is not causality.

Here it is, once again. The patronizing tendency to dismiss the self-introspection gains of someone who has extensively self-analyzed and have had professional analysis on the roots of her eating disorder. Once again, we don't listen, I mean truly listen to those people who have experienced an eating disorder intimately and savagely and consider their input into the larger discussion. v

I can't even begin to explain just how incredibly offensive this is. When you dismiss my experiences and my analysis of those experiences and all the gains I have made in recovery, what you are saying is this: You are irrational, delusional and misguided. You are ignorant and incapable of accurately and efficiently analyzing the roots of your disorder. You do not know what is best for you and need someone else to determine your welfare. You are not the best judge of your own mind nor are you the best arbitrator of your own life experiences. You have been brainwashed by propaganda into believing your family dynamic played a role in your eating disorder. Your experiences do not matter, do not count, are not important. You are wrong. I am right.

I don't believe you intend to intentionally offend those of us for whom family relationships do play a role in our eating disorders, Harriet, nor do I believe the above is what you are implicitly or expressly stating. But you have to understand that when you dismiss, trivialize and diminish my experiences - and I am hardly an anomaly of eating disorder cases - this is how I and others like me receive such condescension.

I happen to agree with you Harriet on centers like Remuda Ranch. And I've never disputed the success of FBT therapy for adolescent girls when caught in the early stages of their disorder. But multiple studies reveal that FBT is effective only for this demographic and that even in this demographic, those with troubled family dynamics either do not complete the program or are not successful at it. FBT, too, is not recommended for adults with an eating disorder.

Calling for an examination of the role of the family in the development of an eating disorder is not the same as casting blame on the family or parents - something I often hear proponents of FBT, especially parents, claim. If our primary goal is recovery from an eating disorder, we shouldn't shy away from examination of any kind that might help aid in this endeavour.

Harriet said...

Rachel,

I am most emphatically NOT calling you delusional, irrational, brainwashed, or wrong. I'm merely pointing out some things I feel to be true, out of my own experience, not only as the parent of a child with anorexia but also as someone who has had panic disorder since age 11. When I wrote about our tendency to give our experiences meaning in retrospect, I was writing about myself as much as you, about the human condition and tendencies.

I hope it goes without saying that I respect you, your opinions and ideas, and what you've had to go through. I don't dismiss your experience and your analysis.

But I also don't agree with you on every point. That's OK--dialogue is good, so long as everyone feels respected. I'm sorry that you don't.

I think parents whose children grapple with anorexia experience it too. Your words feel very apt to me: I also feel that I experienced an eating disorder intimately and savagely. While this was not in my own body, it was in the body and mind of someone I love more than anything in the world. Someone for whom I was responsible, especially at that point in her life, and for whom I've always had tremendous empathy. To be honest, I felt traumatized by the eating disorder then, and still do in many ways.

So I certainly do not mean to offend you, or denigrate your experiences. But I have my own feelings and opinions and they're not just intellectual hoo-ha.

We don't know because no one knows what exactly causes eating disorders. We will probably never know because there's no one thing to know. But while I agree with you in principle that examination is a good thing to help get to the bottom of things, I reject whole-heartedly anything that heaps more criticism and more blame on families. You don't know what it's like to be on the receiving end of that. You can't know, because your experience was different, just as I can't know what it was like for you or for my daughter on the inside.

Aside from the fact that it's not helpful to the sufferer at all to blame families, it is offensive and groundless to me, as a mother who has done a pretty good (not great, not perfect by any means) job of loving and nurturing my children.

We'll just have to disagree on this.

Anonymous said...

I partially agree with what you're saying, but when you talk about the treatment centers, you have to remember that it varies from person to person. I know that your daughter was successful from maudsley, and that's great, but for some people, a treatment center is necessary. I know that for me, when I was in outpatient treatment, with some of the best doctors in the country, that I was completely unwilling to participate and made little to no progress. For some people, it really is necessary to step into that treatment environment (in my case Remuda, which I would, in fact, totally recommend) to fully focus on recovering.
Setting that point aside, I do agree with the other things you had to say-- from what I've seen, most of the parents' involvement is a child wanting their parents' attention or to please their parents, or their own perfectionism. I would in no way blame my parents for my eating disorder, but I know that going into treatment showed me that, in fact, my ed was even less of my parents' fault than I had previously believed, because I had interpreted my parents' actions of wanting me to happy as wanting me to be perfect.
Anyway, sorry for this rant, as I do truly think you have valuable things to say. All in all, I just wanted to point out that different methods do truly work for different people, and that in fact, I myself would recommend treatment at remuda to any parents with eating disordered children. I hope your daughter is doing well, same with yourself!

Anonymous said...

I believe Harriet has said more than once that FBT isn't for everyone! It amazes me to read so many posts that not enough consideration is given to non-FBT options and "it's not the only way". Of course it's not the only way. In fact it's barely available. Many clinicians have never heard of it and some who have dismiss it out of hand. FBT treatment is extremely hard to find in the US. There are only a handful of truly qualified professionals working with the approach. No one ever said it's the "only way". The vast majority of US kids are not treated with FBT. Increasing parents are aware that there are many options. I think that's a good thing.
--A different anonymous

Harriet said...

Exactly.

In fact, the ubiquity of the "FBT isn't for everyone" comments makes me think of the truism about the lady who doth protest too much.

Rachel said...

Aside from the fact that it's not helpful to the sufferer at all to blame families, it is offensive and groundless to me, as a mother who has done a pretty good (not great, not perfect by any means) job of loving and nurturing my children.

We agree that it is of no use to anyone to place blame. I don't think blaming anyone is constructive for either the blamer or blamee. Blame, to me, denotes intention, and I don't think anyone would intentionally contribute to the eating disorder of their loved one, or I would hope. And I do recognize that it is probably more agonizing to watch someone self-destruct than it may be to self-destruct. For this I have great admiration for you, Harriet, and your enduring dedication to your daughter and your family.

My relationship with my mother most impacted my choice of food and weight as vice. I was angry with her for many things for a long time and that anger fueled my eating disorder. After discovering Buddhism, I came to realize that anger hurts those who hold it most. At the height of my eating disorder, I didn't speak to my mom for 8 months. And it wasn't until I forgave my mom - fully and unconditionally - and looked beyond the hurt and the pain to understand why she did what she did and why she acted as she acted did my recovery from my eating disorder truly begin.

I don't think casting blame is constructive, but I firmly believe that if a family dynamic is a contributing role in one's eating disorder, it's crucial to analyze it and work to ameliorate it for the health of the entire family and to prevent future eating disorder relapse.

Anonymous said...

I would like to point out that consideration of any problems that interfere with normal adolescent (which certainly includes healthy eating) is part of FBT. In the later phases kids resume independence and focus shifts to healthy development. Any number of things might remain an issue--perfectionism, anxiety, cultural concerns and perhaps even family problems. Thinking these things through is certainly a part of FBT. It is not just feeding kids and then forgetting about their problems.

T said...

An observation I have made is that, while it is often said that FBT is not for everybody, any mention of other types of treatment are quickly criticized by many supporters of FBT.

I work at a nonprofit residential facility (not for EDs). My co-workers & I care very deeply for our clients and are sometimes bothered a great deal when we hear of some treatment practices at other facilities. However, when we write articles or talk to others, we discuss emperical research, treatment strategies, successes we've had, etc. But we never publicly criticize another facility or put others down. It can cause closed mindedness and prevent those we're criticizing from truly hearing what we have to say. That doesn't help us or those we're treating - and definitely not those *they* are treating.
One way to make changes is to be able to conversate with those we're wanting to change. But how willing will they be if they've heard constant criticism about their practices from us?

I believe FBT is the best type of treatment for children & adolescents. With the right kind of support system, I am sure it can be very effective for many adults w/ EDs. However, there are adults w/ EDs that do not have the kind of relationship w/ their family that would be needed in order for FBT to be successful. And since many adults w/ EDs have had their ED for many years, they often don't have a lot of friends or a good support system to help them. We can't just say, "Oh well, sucks for you." Something needs to be offered. Treatment centers, such as Remuda, offer it. Of course, many other places do as well, such as Johns Hopkins and Princeton.

All that said, I do think the article by Remuda was rather offensive (and I'm not even a parent of a child w/ an ED!). I often think some treatment centers get a bad wrap and are unjustly represented as being anti-parents, but I think complaints about that article are definitely just. I was pretty surprised to read it.
However, I still believe that constant public critism doesn't serve any purpose.
And, as obvious by some of the posts, it offends some sufferers.

Harriet said...

If you work at a nonprofit residential facility, that sets you apart right there from 99% of facilities for EDs. The problem is that in the absence of effective treatment protocols, especially for chronic adult sufferers, the profit motive plays too big a role in how things play out at these places.

I don't know a single advocate for FBT who says it's the only solution, period, end of story! I'm getting a little frustrated at having this assumption made over and and over. Obviously no one treatment works for everyone. FBT has been demonstrated to be very effective (90% effective 5 years out) for teenagers. Stanford recently expanded its use of FBT to include those in their early 20s, too, with excellent outcomes.

Of course there are people for whom it's not appropriate for a variety of reasons. And of course they deserve treatment too. I would love to see clinicians develop better and more effective treatments for chronic sufferers too. Unfortunately the nature of the disease makes it very difficult to cure once it's been entrenched for a while.

I think the best hope is for FBT to become the standard of cre (not the only treatment but certainly a first-line treatment) for all adolescents. That way maybe we could prevent a lot of those chronic cases from developing, and save a lot of pain and suffering.

And for those for whom it's not appropriate or effective, I wish there were nonprofit residential facilities like the one you work at, where making money wasn't the prime directive. So long as there's a profit motive operating I will be cynical as hell about most residential care.

Thanks for your thoughts.