I often hesitate to make broad, sweeping claims about the nature, cause, and experience of eating disorders and disordered eating. However, if there is one thing I feel absolutely certain saying about these disorders, it is that they are incredibly complex and multifaceted with no “one-size fits all” solution. So, I was quite excited when I came across a recent article by Michael Strober and Craig Johnson (2012) that explores the complexity of eating disorders and their treatment. Both authors have significant clinical experience treating eating disorders.
This article uses cases studies, literature, and the authors’ collective clinical experience to respond to some of the key controversies surrounding anorexia and its treatment. Among the major controversies that have come to light of late, they focus on two:
- Genetic/biological causation (Biologically-based mental illness – BBMI)
- Family-based treatment (FBT) as the best form of treatment for adolescents
The authors’ exploration of these topics supports an overall argument: focusing on singular explanations and solutions for anorexia, particularly through the vehement defense of any particular approach, obscures the complexity of the disorder, as well as the processes and skills required for effective treatment. This complexity needs to be taken into account in order to derive truly effective methods for treating diversely presenting disorders. After contextualizing their argument for deeper, more complex understandings of AN and improved clinical skills in treating AN, Strober & Johnson conclude the article by suggesting benchmarks for treating AN.
CONTROVERSY AS A CONVERSATION CATALYST
Far from suggesting that the controversies that emerge surrounding eating disorders in general and AN in particular are to be avoided and neatly cleared up, the authors argue that disagreements and discussions around the etiology and treatment of these disorders have helped to illuminate areas for new and improved learning.
Importantly, the authors note that they do not necessarily disagree with the recent focus on BBMI and FBT; they are simply urging a softening of the staunch reliance on these paradigms to the detriment of all others.
As readers might be aware, explanations of anorexia have become increasingly focused on genetic/biological factors. Treating anorexia from a gene-centric point of view has led, among other things, to the suggestion that until weight is restored, psychological treatment is futile.
While there is evidence that points to improved capacity to do the psychological work involved in recovery once weight is restored, the authors take issue with the clinical practice of not initiating this psychological work until weight gain has occurred. Therapy and psychological work need not wait until the patient has gained weight, they argue.
REIFICATION OF GENETICS
While randomized controlled trials are often heralded as the gold standard in any kind of scientific field, and rightfully so, an overreliance on randomized controlled trials (RCTs) and genetic studies may result, the authors suggest, in a “reification” of results of such studies. This may result in overlooking “clinical wisdom” that has not been tested. Though evidence may be strong for a particular form of treatment, it does not mean that this treatment type is the be-all and end-all for all individuals with AN.
As Strober & Johnson suggest, many questions remain, including why treatment is not effective for all individuals, why clinical practice does not always match up with research evidence, and why little discussion has centered around the diverse skills required for effective treatment of AN.
BBMI REVISITED
As the authors suggest, there is strong evidence for the inherited influences involved in the development of AN. I’m certainly not a geneticist or neurobiologist, but I can grasp the convincing nature of the evidence pointing to strong links between genes and AN.
However, just as an overreliance on any particular form of treatment can lead to unexpected negative consequences, over-relying on the view of AN as a “brain disease” can obscure the social factors that interact with biology to lead to various outcomes for individuals predisposed to AN.
The authors make a number of key suggestions that help to clarify the gene/environment interaction involved in AN:
- Genes and environment are correlated and neither fully explains or causes eating disorders:
- Individuals with a genetic predisposition may both seek out and “invite” certain social environments, which lead to the expression of the characteristics to which they are predisposed
- Genes and environments can both co-occur and/or clash, at different moments in an individual’s development
- Brain circuitry adapts to the environment
- Stress (for example, exposure to negative experiences during childhood) can precipitate neurochemical changes, which shape and change different areas of the brain
- Environmental stress leads to over-sensitivity in the brain’s fear-generating areas; on the flip side, these structures can be calmed by caring rearing environments
- An individual’s social world has a strong influence on behavioural outcomes
- Epigenetics explores how environment can “pull the trigger” of particular genes, beginning even before birth
The authors’ discussion of the interaction between genes and environment is detailed and intriguing; I was encouraged by the suggestion that both positive and negative environments can play into biological processes. Too often, I think, studies focus primarily on the negative, and I found this positive slant to be encouraging.
In short, Strober & Johnson argue that clinicians (and individuals in general) need to take into account at least 3 factors in understanding AN:
- Biology
- Rearing environment
- Larger social context
Without an understanding of these factors, treatments will inevitably come up short. As the case studies in this article illustrate, “symptoms of psychological illness do not exist in an impersonal vacuum,” and relying solely on biological explanations fails to generate solutions that can be discussed and understood by families and sufferers.
EXPERIENCE, SKILL, AND COMPLEXITY
Another central element of this article is the focus on the importance of effective training for practitioners who will be dealing with these complex disorders. The authors take up a discussion of the tradeoffs involved in determining the appropriate course of care for individuals with AN. They argue that clinicians must become aware of the key debates in understanding and treating AN, as well as the science that underlies them.
Parents and patients, too, need to be informed (presumably by treatment teams) about the roles of environment and biology. I particularly appreciated this suggestion; too often, it would seem, patients and parents are kept in the dark, and may come to understandings of AN that are, at best, partial. Environmental impacts on AN may be ignored out of a fear of parent-blaming, which the authors suggest is misguided.
Looking to the interaction between biology and environment does not vilify families, but underscores the importance of attending to dynamics in the sufferer’s environment, which may sustain the disorder or inhibit recovery. Overall, the authors make the argument that despite all the incredibly interesting and important scientific progress surrounding AN, the importance of skillful, intuitive and decisive clinicians.
BENCHMARKING
Obviously, given the complexity of AN, it is not easy to determine benchmarks for the course of treatment.
The authors point out several key considerations to be taken into account:
- Mild symptoms that persist in the face of overall improvement/stabilization must not be ignored
- Limited early weight gain may limit possibilities for what is achievable in outpatient settings
- Single interventions are generally unsatisfactory
- Therapist inexperience can itself cause harmful effects
- The longer the illness persists, the worse its impact on physical and mental health
While benchmarking may be helpful in terms of deciding on inpatient/outpatient care and course of action, without a strong treatment team with adequate experience and understanding of the complex processes at play in AN, they may not prove useful.
With the caveat that their suggestions for benchmarks are a frame of reference rather than empirically based solutions, the authors propose several scenarios and benchmarks. These benchmarks center largely around weight gain or loss, and vary based on the patient’s age and course of illness.
I won’t give detailed explanations of the benchmarks here, but if you are interested I highly recommend reading the full article. Suggestions are made, too, for ways that therapists can respond to patients and/or families who reject the recommendation that care be increased.
IMPLICATIONS
Overall, this article does an excellent job at highlighting the complexity of AN. The suggestions Strober & Johnson make provide a strong case for the importance of acknowledging this complexity, and the authors argue for the importance of well-informed, well-coordinated treatment for eating disorders.
They also acknowledge the constraints placed on caregivers and clinicians, which is an important consideration to make; treatment is obviously not accessible to all, nor is it always available at the time it is perhaps most needed. While it is great to make recommendations for finding clinicians with the most experience and best intentions, this kind of exceptional care is obviously not accessible to all, for myriad reasons ranging from finances, to lack of diagnosis, to long wait lists, to geographical location, and the list goes on.
The authors also do a fantastic job, in my opinion, of acknowledging both the agency and the incredible struggles faced by individuals with eating disorders and their families. I always appreciate articles in which the authors’ obvious passion for improving care and outcomes for eating disorders shine through, and this article was no exception. This was particularly clear in the way that the authors articulate the need to make information about the complexity of disorders more readily available not only to practitioners, but also to families.
References
Strober, M., & Johnson, C. (2012). The need for complex ideas in anorexia nervosa: Why biology, environment, and psyche all matter, why therapists make mistakes, and why clinical benchmarks are needed for managing weight correction International Journal of Eating Disorders, 45 (2), 155-178 DOI: 10.1002/eat.22005
I LOVED this article as well. It conveyed many of my frustrations with trying to explain the disorder as a mix of genetics and environment to those close to me. Unfortunately, in dealing with family members, I’m not sure how easy it is to convey the GxE thing. In my experience, it is much easier for family members to take the biological approach and assume NO influence over the development of the eating disorder (totally adaptive for their mental well-being; I get it). I guess this is where family therapy should step in. In fact, I’m beginning to wonder if some attempt should be made to at least attempt some family therapy in the treatment of ED. I’m not advocating for FBT, but I do think that those closest to the patient should be aware of how their influence may or may not interact with the patient’s underlying predisposition and influence the trajectory of the illness/recovery.
I agree. I think it is important to emphasize that while they might have had a limited role in causing it, they certainly can play a big role in the trajectory and eventual outcome of the disorder.
Don’t fall down in amazement but I agree Tetyana. I like the “perfect storm” approach – a melting pot of genes, biology and environment.
Ergo, treatment should focus on the two that we can “fix” – the biological and environmental factors that are causing/perpetuating an eating disorder. To do one without the other can just lengthen the treatment and the pain!
The problem for me has been that parents are automatically blamed for a patient’s eating disorder and, up until now, there has been little to counteract that with. Of course, no parent is perfect and, having a perfectionist, sensitive child makes parenting a minefield.
We have been lucky enough to be treated by Prof Lask – he does everything all at once – therapy and refeeding and ironing out any family clashes and dynamics that need addressing and listening to everyone. It is a 5 star treatment programme.
I find very few families take the “No influence” approach and would be hard pressed to find a parent who doesn’t feel that they wish they could change stuff that has happened for all of their children, or protect them better from stuff that has. That is the sign of a good parent, IMHO.
The only reason I didn’t like this paper is I found the way it was written (almost entirely by Strober – it is his style of writing but no doubt with input from Johnson) – I am not good at Gothic writing!
I agree with you. Like I said many times before, my parents were never blamed for it at all, but then again, I was receiving treatment in a large city with so many hospitals and well-trained physicians. It is hard to generalize from that! Toronto is unlike many other cities.
The paper had great points (that made me go “Yes!” every few paragraphs) but it was terribly written. Too many em dashes and semicolons in unnecessary places.
I love the point you’re making about the futility of ignoring either side of the equation- this very realistic opinion shined through in this article, for me, despite the sometimes iffy writing style! The importance of having a therapist/psychiatrist/doctor etc. who really “gets it” (like Strober in particular seems to) was another piece that stood out here, for me. Yes, this seems obvious, but the importance of an understanding, knowledgeable and practical carer can’t be overstated, in my opinion.
I think that you’re right about the difficulty of explaining the compelxity to families and that they might prefer to take a biological approach. I think in terms of involving the family, it’s probably a matter of degrees- while FBT is obviously not for everyone, I think it is important that the family (and by family here I mean anyone who the individual considers to be family, not just biological relatives) be somehow brought into the picture, at least in terms of developing some degree of deeper understanding of the complexity of the illness, as you suggest.
Yeah, I’m pretty excited about UCAN. Family doesn’t just mean biological parents.
All the benchmarks are so important to be aware of. I’d add – careful follow up of all patients is essential, and weight restored is by no means ‘recovered’.
I’d also say it’s important to realise that no patient exists in a vacuum. The interactions and support of every single person in their lives makes a difference.
I think much better insight comes for all through those with different ideas of what is the ‘best’ treatment path debating with one another. I’d rather they debated and shared ideas and knowledge than there be a situation where you could have treatment from one side OR the other but not select the elements that actually helped you from either.
Lastly for 15 years I was repeatedly told that there was no point doing therapy while I was underweight. Finally in recent times, people have said that’s hogwash, and agreed to help me with therapy. I think if a patient wants therapy by all means give it to them – even a little bit sinking in is better than nothing.
“I think much better insight comes for all through those with different ideas of what is the ‘best’ treatment path debating with one another. I’d rather they debated and shared ideas and knowledge than there be a situation where you could have treatment from one side OR the other but not select the elements that actually helped you from either.”
Definitely!
“Lastly for 15 years I was repeatedly told that there was no point doing therapy while I was underweight. Finally in recent times, people have said that’s hogwash, and agreed to help me with therapy. I think if a patient wants therapy by all means give it to them – even a little bit sinking in is better than nothing.”
YES YES YES YES YES!!!!!!! AND SAME WITH ANTIDEPRESSANTS!!!
I CRINGE when I hear people say that there’s no point in doing therapy when a person is underweight. WHO GOT THAT IDEA?! Are you kidding me? No, you are not going to make amazing progress, but, as Stephanie Zerwas said to me at ICED2013, you are planting the seeds, building therapeutic alliance, and trust.
I would NOT do therapy with someone who refused to see me just because I was underweight (with the exception of medical instability of course). I think it is infantilizing.
I love what Stephanie Zerwas said to you- so, so key. It seems so strange to engage in refeeding without giving at least the option of some sort of therapy, to me. Then suddenly when you’ve reached a particular weight (at which you’re highly unlikely to be comfortable, through means that are likely very uncomfortable), you’re expected to talk about very personal things to someone you don’t know at all?
Absolutely, yes yes and yes. You wrote “weight restored is by no means ‘recovered'”- I completely agree, and I also think this is where, a lot of times, family members and members of society in general might make assumptions about an individual’s mental health status based on external appearances. I also completely agree about debates about the “best” path leading to more (and better) approaches- as long as, as this article argues, those on each side of the debate are open to entertaining alternative possibilities; which one would hope would be the case but sadly doesn’t always happen.
Let me tell you, people were WAY more concerned about me at a low weight when I was NOT bingeing or purging, eating relatively well, totally stable, really happy, than when I was bulimic like it was my day job but at a normal weight. Bulimia, and by that extent, having an eating disorder at a normal weight makes you practically invisible.
People didn’t take it seriously, despite how severe it was at some points, because I looked so much better than had before.
Very glad to see articles that focus on the individual nature of EDs and thus, the need for more individualized treatment. Hardly any diseases and their treatments are “one size fits all” but this is especially true for something as enigmatic, difficult and varied as eating disorders. I see people – bloggers, patient family members, etc – just throw out statements as though they are gospel and everyone should always follow them – “You should be eating X calories a day”; “You should be gaining weight at X rate”; “You need to stop doing that/start doing this/never do that”; etc. That shit really bothers me because being that simplistic about any illness is usually misguided, but it’s even more so, and just downright stupid and ignorant, in regard to an illness that can be so starkly different from patient to patient.
I think people just don’t like dealing with something they can’t easily nail down and pigeonhole, so they don’t want to allow that EDs can’t fall under that, and that treatments need to be evaluated on an individual basis, that every person’s recovery process is going to be different, what worked for you may not work me, etc. I’m just glad I have a doctor who does get this. She wouldn’t be my doctor if she didn’t!
Your comment reminds me of a conversation I had with my psychiatrist. I was telling him about my experiences at ICED and how I felt that there were some individuals present who definitely had strong ideas about what “should” be done.
He laughs and replies (something like): “Well, that’s where they go wrong right from the start: with the “shoulds.””
This is why he is my doctor, too!
A lot of times I feel that if the ED is comorbid with other psychiatric disorders, treating the ED without treating the other disorders alongside it, or even prioritizing the other disorders (like OCD, anxiety, or PTSD) is just misguided.
Yesssss, “the shoulds” are the bane of treatment and recovery! F ’em 🙂
Ignoring comorbidity seems absolutely misguided to me as well; are we trying to pretend that these might not in some way impact an individual’s recovery? Or simply their mental wellbeing? Ugh.
I agree that people aren’t fond of trying to wrap their heads around things that aren’t easily nailed down, it’s extremely frustrating! I always get very excited when articles like these point out what I have always thought should be self-evident, when it comes to eating disorders (and many other illnesses, be they mental or physical), which is that one size certainly does not fit all; people are not extractable from their physical environment nor from their biological make up; it just doesn’t work like that.
*nervously comments on website i so admire*
The part about environment touched me, b/c my disorder did not come out until after i moved out from my parents. I can’t say enough positive things about them, i really can’t. So that struck me. Their environment for me was quite different than what i encountered on my own.
The part about limited weight gain early on is concerning me…i saw a dietician, loved her but graduated, for like…december until may and i knew and she mentioned how slowly i was regaining. I hope moving to a therapist who specializes in EDs (my current one realllllly doesn’t and has not been helpful and even made me feel kinda ashamed :/) will help me sort that out.
Hi Danielle,
Thank you for commenting!! No need to be nervous and I’m always happy to see readers comment, especially if they’ve been reading for a while!
“The part about environment touched me, b/c my disorder did not come out until after i moved out from my parents. I can’t say enough positive things about them, i really can’t. So that struck me. Their environment for me was quite different than what i encountered on my own.”
Yup, I think this is definitely the case for some people. Environment =/ parenting only. It is everything, really. My parents had nothing to do with causing my eating disorder, though they were not a positive influence in helping it. But, I certainly do not and never blamed them (or met clinicians who did). A traumatic experience in University is part of the environment, too.
Besides, as I said in my very first post, the precise role of the environment : genes will vary from person to person. It just depends.
“The part about limited weight gain early on is concerning me…i saw a dietician, loved her but graduated, for like…december until may and i knew and she mentioned how slowly i was regaining. I hope moving to a therapist who specializes in EDs (my current one realllllly doesn’t and has not been helpful and even made me feel kinda ashamed :/) will help me sort that out.”
I hope your new dietician will help you out! Feel free to update!
I know some people for whom slow weight gain was crucial and for others who had to do it really fast and couldn’t bear to do it slowly. It all depends. It is complex!
ahhhh ty so much!
I have an opportunity right now to put together a more ED knowledgable treatment team, so thats pretty exciting. I definitely am in a place where I need to be held accountable heh.
It really is, and I think the individuality of each person’s ED is so important to keep in mind, which among everything else, I’ve loved reading from you.
I’m slowly regaining, but I’ll be open if a team member thinks maybe it should be a bit faster, or even if they bring up stepping up my level of care, if only bc I know there’s a great place that does multiple levels of care in my city that my insurance covers. But then, its possible my recovery has gone relatively well bc I *havent* gained it all back immediately, idk.
Really glad you and these authors pointed out that psychological treatment can begin before weight restoration. 10 months of recovery without beginning to get into that stuff…I’m not sure I’d be doing as well. I feel so open to it, I’d think it a shame if someone were to say no, you need to regain it all first. Seems like it would be wasted time for me. and the little psychological work I’ve done has certainly helped me prepare and begin to accept the fact that I do need to get back to a healthy weight for my body. It’s taking long, but I’ll get there…I need to!
Ty for having such a welcoming atmosphere here, I get nervous but felt really comfortable and even excited to comment :p I’m sure as I progress I’ll be leaving more comments on future posts.
Thanks for commenting, Danielle! Sorry it has taken me a while to reply- I am at a conference right now. I’m happy you identified with what the authors of the article discusses re: beginning psychological treatment before weight restoration- if you’re wanting to begin the process of therapy before being weight restored I agree 100% that you should be able to do so! I would also like to echo Tetyana’s comment about the individual variability of the influence of genetics and environment, as well as her hope that your new dietician is helpful for you.
oh my goodness, no need for apologies! as they say, life happens 🙂
Thank you so much, I really have been thrilled and greatly appreciate your and Tetyana’s comments. It’s amazing how differently people react to their environments, and fascinating learning more about how that interacts with biology. I’ve always known, but never really understood until my ED that issues around food (which ofc are not really about that) are not exactly rare in my family.
Hope the conference goes well 🙂
I disagree with most of what Strober and Johnson have written.
If a child or adolscent is suffering from anorexia nervosa, the best approach in my opinion is to keep it simple. First, parents take charge and refeed the kid to medical health. Second, parents gradually return control of eating back to the kid. If, several months after weight restoration and return of normal eating patterns, she still has problems that need professional intervention, do it then, not before. Most people are surprised to find that the so-called co-morbid conditions associated with AN are the product of semi-starvation and the anxiety associated with disorderd eating behaviors. These problems normally vanish after phases 1 and 2, above.
Strober and Johnson have never, in their careers, tested their theories in rigorous, systematic experiments. They don’t have evidence to back up their claims.
Bottom line: I think parents have a better feel for how to treat their kids with AN than clincians do. Parents are the experts on their children. Strober and Johnson have never met my kid and it’s arrogant of them to think they know how to help her. Furthermore, why, as a parent, should I be expected to pay a clincian a lot of money to offer a treatment that has never been tested in a clinical trial?
What exactly do you mean by “take charge”? Force feed the patient? Make them sit at the table until they’ve eaten “enough”? I’m sure that looks like it works on TV movies but in real life, it is actually really difficult to make someone, especially a sick person, do something they don’t want to do, can’t do, are afraid of doing, etc.
Plus, sometimes being overbearing and rigid is a surefire way to just get your kid to resist even more and dig in deeper.
And as Tetyana mentions, what about adults? I’m in my early 30s and had to move back home because of my AN, and my parents have been supportive and want to help, but they’re not going to treat me like a child, and I wouldn’t stand for it if they did.
“Most people are surprised to find that the so-called co-morbid conditions associated with AN are the product of semi-starvation and the anxiety associated with disorderd eating behaviors”
That’s pretty presumptuous and condescending. And even so, so what? It is NOT guaranteed that they’ll go away with weight restoration, and ignoring psychological problems in favor of focusing solely on the physical…well, for many of us that just would not work. Yes, the psychological healing sometimes can’t fully happen without the physical healing, but the opposite is also often true.
As far as parents being experts, well…again, that’s fantasy land thinking. Parents are often FAR from experts on their children, as can be shown by the fact that a lot of the time, parents don’t even know their kid has an ED until it gets to an extreme point. Also, even if they know their kid well, the vast vast majority of people know fuck all about eating disorders. Do they understand refeeding syndrome? Do they know that it’s not just about calories but also getting extra protein? Do they get that a person can’t physically go from eating practically nothing to eating “normal” amounts of food? My parents are well-meaning, but they knew none of this at all. I had to give them books and websites and explain shit over and over. Barely anyone who isn’t a sufferer or a doctor knows anything beyond the simplest superficial details about EDs that they read in supermarket tabloids. Thinking that a parent can treat their kid better while they likely know nothing about the illness is not just wrong, it’s dangerous.
Sorry for ranting, but I take this personally.
Just to pop in as a non-ED parent of a non-ED kid here (i.e. as far away from personal anecdotal experience as you could possibly get on the topic), I think Anon might be cut a bit of slack?
If you have ever been a parent of someone with an ED in the last, oh I don’t know, forever years, then you are often both supremely devastated and enraged by physicians’ hand-waving on how complex these conditions are (cough*it’s your fault*cough) while your child refuses to eat and is dying before your eyes.
Anon has clearly had it up to here with the “complexity” framework and is, presumably (sorry if I am wrong on this assumption) a very worried parent.
There is no question that the site owner’s initial review is both balanced and insightful. And I could comfortably argue that Anon misconstrued the nature of this site and the focus of these articles.
However, without adequate re-feeding and weight restoration there is more than enough clinical evidence to suggest that distinguishing between what is the result of a malnourished brain, or what might be present as a coexisting and distinct mental condition is not feasible. And given the long prodromal state of eating disorders, it can even be a bit iffy to depend upon patient recollection of having x-condition prior to the onset of an eating disorder.
I know that no one here will be too keen to look at the Minnesota Starvation Experiment, because the study group was populated with male subjects a billion years ago and therefore completely irrelevant, so I will try mightily not to set myself up for flaming, but given that all manner of psychological disorders manifested in the subjects as a result of starvation, and did not exist prior to starvation, I would not go so far as to say that it is completely factually incorrect to state that co-morbid conditions resolve with re-feeding. Some will and many do.
I think Anon might be dealing with the unthinkable terror of losing his or her child. And I know that everyone on this thread, and the site owner of course as well, can likely empathize on some level with what that might be like.
I could only imagine how many innocents I might verbally skewer in the middle of the umpteenth sleepless night on the web trying to find a way out of an ominous death sentence hanging over my own child.
I don’t know who Anon is and s/he might indeed be a world class a*hole and easily win a badge for worst parent of the year to boot, but we don’t know.
As far I understand Science of EDs, it is a scientific review site that is not meant to be about the rubber hitting the road when it comes to first-person experience in recovery — so it is still valid to call Anon out on misunderstanding the framework and it makes his/her post inappropriate.
I don’t know if any of this burble helps or makes it worse, but my hope is that it might diffuse anyone taking the Anon post personally. And Tetyana in particular — your review is above reproach.
Oops — Andrea — my bad! Andrea, your article is above reproach!
“However, without adequate re-feeding and weight restoration there is more than enough clinical evidence to suggest that distinguishing between what is the result of a malnourished brain, or what might be present as a coexisting and distinct mental condition is not feasible. And given the long prodromal state of eating disorders, it can even be a bit iffy to depend upon patient recollection of having x-condition prior to the onset of an eating disorder.”
I agree 100%. No question, I don’t think anyone would argue with that. I was certainly more anxious, unhappy, and obsessive when I was underweight. But I don’t have comorbid OCD or depression, or even a clinically diagnosable anxiety disorder. But, I know more people who do than those who, like me, don’t have comorbids.
But when I say comorbid condition, I mean precisely something that can be distinguished from starvation-induced anxiety, obsessionality, depression, and so on. To me, those are NOT comorbid conditions. They are the result of the ED and of the starvation. So perhaps the issue is a terminology/linguistic one, in which case I should clear that up: When I use the term comorbid condition, I mean something that’s clearly a separate issue that does NOT resolve simply by refeeding. Something that either clearly existed before the ED or persists upon weight-restoration. (In fact, for many, I know comorbid conditions get worse because there’s no AN/BN buffer.)
I certainly don’t think your comment makes it worse.
I am not a parent, but I’d rather be a patient than a parent because it is TERRIFYING to see your kid starve and unable to eat food, or binge/purge non-stop. It is terrifying. I don’t know it as a parent, but I know it a friend of others with EDs. It is really scary to watch other people suffer so much and feel unable to do something. When it is your kid? I can’t even begin to imagine. When I was on the FEAST FB page, I was often in tears reading the comments and posts by parents.
But, but, I think it is important to look at a situation from a balanced perspective. I tried to do that with my post on Family-Based Therapy. I know people who think it will cure everyone and people who don’t believe it cured anyone. Clearly, neither are true.
AN, like every other mental health disorder, is a complex issue. It necessitates a complex solution. Every patient, family, circumstance is different. There’s no one-size fits all approach.
Just to add, Andrea wrote the review, not me. She’s awesome.
Yeah, I just caught my mistake on the author right after I posted, ugh! (apologies to Andrea again).
We are in complete agreement: there is no one-size fits all.
Point taken on the clarification of comorbidity in this framework.
I only meant to highlight that a starved brain is malfunctioning such that comorbid conditions are often obfuscated, but not that their existence could completely rule out.
No question we see the what I call the whack-a-mole approach to EDs acting as a buffer for many patients — meaning that when ED behaviours are remediated (whacked down back into one hole), suddenly other behaviours worsen and pop up in another hole (OCD, GAD, phobias, PTSD…).
I actually lean towards viewing EDs as residing under the great big anxiety umbrella. In that framework, perhaps the surge of let’s say OCD or social phobia, in the absence of the anxiety modulating avoidant behaviours towards food, are not comorbidities, but rather a symptom slide throughout a single broad anxiety disorder spectrum?
A true comorbidity within that framework would perhaps be schizophrenia and ED, or FASD and ED (as examples).
Just spitballing. Plus you know how I have no love of the DSM classifications in any case.
I’ll stop hogging your comment section and I say again, the article is above reproach and the raison d’être of the site is well supported in all the articles: identifying and framing the latest published data on eating disorders.
Uh, you are not hogging the comment section!
I basically agree with you on everything. Obviously, deep in AN or BN, a lot of the comorbidities are obfuscated. It depends on the comorbidity, too.
I agree on the anxiety thing. I think so too. My hypothesis is that those with long-standing AN-R that doesn’t crossover to AN-BP or BN (emphasizing the bingeing part, not AN-P on its own) are more anxious. And, I would further hypothesize that trait anxiety is a strong predictor of long-term recovery. Can someone test my first hypothesis please?
It is silly to think of these disorders as discrete entities, you know–from a psychological and neurobiological and genetic perspective. That said, even though OCD and PTSD, for example, fall under the anxiety spectrum, treatments are different.
It is kind of like I think the narrative each person has about their ED is important in treatment. It doesn’t mean it is what caused the ED or that it has any etiological validity, but it is still important to take into account how the individual feels about their ED and the function it serves.
I appreciate your feedback. I’ve been meaning to comment on Your Eatopia (I made an account, too), but keep forgetting/not enough time/other things come first. Will do so soon.
No worries for the misattribution! I very much appreciated you comment. I would have replied earlier but am at a conference right now and therefore my computer is not attached to my hip in it’s usual way. I am also not a huge fan of DSM classification, as I feel it fails to represent the very complexity that articles such as Strober & Johnson’s identify as key in developing effective approaches to treating eating disorders. I also agree that parents may sometimes reply out of a terrified and protective place. Thanks again… sorry I don’t have time to craft a more articulate reply.
“I know that no one here will be too keen to look at the Minnesota Starvation Experiment, because the study group was populated with male subjects a billion years ago and therefore completely irrelevant, so I will try mightily not to set myself up for flaming…”
I’m not sure why you think people here would reject this study? IMO, it’s a really important study, and I wish more people were familiar with it.
Personally, I have a lot of concerns about the Maudsley Method being used with older teens. I also have concerns regarding the current obsession with EDs, particularly anorexia, being “caused” by genetics and nothing else. Not that any research is actually saying EDs are caused by genes and nothing else, but that’s what a lot of laypeople hear when they hear a professional say, “I believe EDs are genetically based.” In reality, there is currently ZERO evidence that anorexia is genetic. There is, in fact, evidence that it’s not. You know how people like to quote that around 50% of identical twins both suffer from anorexia? If anorexia was purely genetic, that number would be 100%! So, even though there is no evidence to support the notion that anorexia is inherited, though it’s certainly an appealing idea to some. (I could go on explaining how anorexia *can’t* be purely genetic, but I will stop here for now).
I would never want parents to be blamed for anorexia. I do think, though, that for severe and chronic mental illness that starts as a child or young adult, professionals do need to work with the entire family to see what, if anything, the parents can do to be as much of a support as possible to the child. In some cases, what would make the family a lot more like “normal” would be much less parental intrusion; this is why the Maudsley Method for older teens has me concerned. I know part of the Maudsley approach is supposed to be encouraging the parents and adolescent to have a more age-appropriate relationship. I do wonder how this works in reality, though? I can easily see the parents focusing on food and re-feeding and dismissing the part about working on having more “normal”, age-appropriate relations with the adolescent. I am quite certain that would have been the case for my parents, had they tried this with me.
I should add that I have the utmost sympathy for any parent who is watching their child potentially kill themselves over food and weight. My heart really does go out to anyone in that position. I just know that my family presents as loving and not dysfunctional, when in reality, my father is deeply disturbed and my mother also suffers from mental illness. I am 30 now, but when I presented with severe anorexia at age 14 at the eating disorder clinic, I wish someone had really tried to help me understand that the behavior of my parents’ was NOT normal or healthy. Of course, it would have been great if my parents could see that themselves, but that isn’t going to happen. It is only after moving out on my own and working with an individual therapist as an adult that I realize how much my deeply loving parents harmed me. And I feel so selfish writing this, as I worry that parents that read this, parents who don’t know my parents, will assume I am just over-reacting. Even though every single person I’ve talked to about my parents’ behavior agrees that it is NOT normal and no doubt deeply impacted me.
So, let’s not blame the parents. But let’s also not assume families are either loving vs abusive….from my own family, and from what I’ve seen with some friends, it’s just not so clear-cut.
Sarah, I very much appreciate your very thought-out and thorough comment! There’s a lot to respond to, but I’ll try to respond to two main things.
Regarding appropriateness of Maudsley/FBT, I think all of us have to be cautious to not extrapolate too much from our own experiences. I think this goes for those who’ve had amazing successes with Maudsley/FBT and those who have had awful experiences. I know people in both camps. Then there is the camp of people who wished they had Maudsley/FBT, and the camp you and I are in–thankful we never did FBT because we know it would’ve been awful/harmful. But Maudsley/FBT isn’t for everyone and it was never/should never be “sold” as a therapy for everyone. Contraindications, such as presence of mental illness, in the family should be taken seriously. (I wrote more thoughts here.)
Regarding genetics, we know that eating disorders have moderate-to-high heritability rates, although the actual #’s vary a lot depending on the study–between 0.3-0.8. This means that 30-80% of the differences we see between individuals in a population w/r/t EDs are due genetic differences. This doesn’t mean that genetics cause eating disorders. Eating disorders are not single-gene disorders. But there’s plenty of evidence that differences in genes do contribute — probably to everything: vulnerability, illness course, and recovery. I do think there’s a danger in over-emphasizing the genetics. I think Michelle Easter has done cool/important work on this (see my post here).
I have not heard that people say 50% of identical twins suffer from EDs, and that number seems way too high. According to a review by Bulik et al. (2000), concordance rates for AN and BN in monozygotic twins is 10%. Of course, based on a specific definition of AN, in one study, etc. etc. But still, it is not 50%. From Strober et al. 2000, I have that first-degree relatives of individuals with AN/BN are ~11.5 times more likely to have AN and ~4.5 times more likely to have BN than first-degree relatives of healthy controls.
I did my Masters in a molecular genetics lab, so I am very interested in the interplay between genetics and stigma with respect to EDs, and the extent to which popular “understanding” of genetics contributes to stigma, self-stigma, public understanding of EDs (and mental health more broadly). I did a talk for NIED called “Genetics of Eating Disorders: Current Research & Common Misconceptions” back in April of 2015. It is on YouTube; I can link to it.
Anon
I was just about to stop by and say how glad I am that this article was blogged – at the time, I didn’t find it offensive and found that Strober et al., provided some much needed balance in a field that is very much swinging toward BBMI. . .
I think (someone correct me if I’m wrong) that this is less of an issue in the field of mood/anxiety disorders where there is epigenetic research going on as to how such changes can occur THROUGH life (and especially during childhood/adolescence).
I get scared when people spell-out treatment like this:
1: Child is diagnosed with ED and parents step in to re-feed child
2. Child is given some independence
3. Child begins to work on “normal” adult/adolescent problems, is able to feed themselves and any co-morbids magically disappear.
I think this is a dangerous almost dogmatic ideology for treatment. I also think Tetyana raises a few points that I will expand (re: piggyback) on further
a) Yes, FBT does work and there is some moderate support for its efficacy in RCT (50% response rate at 5 years I believe) – and yes, it should be offered to most young children as a front-line treatment.
However, there have been few of these RCT and knowing academic researchers and their biases, I would like to see RCT-FBT trials run by others than L&L. Replication of results from your own research group usually carries less validity/reliability than other major unaffiliated groups replicating similar results.
b)What is a child (Tetyana’s point)?
* This can depend on the development/chronological age of the child. Their relative financial independence also plays a factor.
c) Parents take charge of re-feeding.
In my case (and I have repeated this ad-nauseum) my parents were alcoholic and physically/verbally abusive during Maudsley (the alcoholism pre-dated Maudsley). My dad has some PTSD issues from the past which prominently figured into the physical abuse.
There was NO screening to determine whether my parents might be psychologically prepared to handle me during re-feeding and how to include my sibling so there was not such horrible fall-out on her part.
As someone who dearly loves both my parents, I certainly wasn’t about to pipe up and admit to the FBT about the verbal/physical abuse and the turmoil this was causing in our family. When I did try to speak up, it was dismissed as the ED talking, or “everyone says that.” It will add that it took years to heal what had happened and we are still working through it.
I realize turmoil is “part and parcel” of doing Maudsley, but this was a whole new level of strain on an already burdened family dealing with multiple mental health and physical issues.
My parents had NO direction as to how to feed their child. Often they reacted in fear to weight loss (i.e up calories by 1500/day when already on a significant weight-gain diet) and had no idea how to respond to weight gain. A dietician (which they asked for and was denied) would have helped them in this context and provided some guidance as to appropriate meal-plan changes (AND a meal-plan itself)
I must reiterate my parents were not professionals and there were NO trained professionals offered to give them insight(as Maudsley involves only an FBT)
Their instructions were to “feed as normal” – but what the hell does that mean when your child is underweight? What the hell does that mean when you child is refusing food?
** My key point is screening. The whole family NEEDS to be assessed before embarking on Maudsley. Yes, some families with challenges may be able to do this, others will not. But screening of the entire family is needed.
d)From Tetyana – THIS. “I think I have a better feel for how to treat my heart than clinicians do. I am an expert on my heart. Dr. X has never lived with my heart and it is arrogant of him to think he can help it.”
You could substitute this analogy for autism, diabetes, asthma, etc – this is where alternative medicine often steps in to empower parents to make their “own” decisions.”
Psychiatrists undergo medical school, 5 years of residency and a fellowship to specialize in EDs. In addition, psychiatry is NOT at the top of the totem pole in terms of where young, aspiring, ambitious med students want to apply.
These individuals are not out for glory or money or to peddle ad-hoc treatments – they are drawn to the specialty for a reason and the burn-out rate is high (especially for EDs).
Psychiatry may lag behind the rest of medicine as brain science is in its infancy, but let’s not forget that these individuals have also invested a significant amount of time and money into education and patient care. To dismiss them is simply arrogant and a bit disgusting.
Anon – I would take the time to carefully read the strober paper – it is one of the most balanced views on the current state of ED psychiatry I have ever read.
(This was long – I hope it makes some sense!)
Also,
Can anyone produce some statistics for:
**Therapy/Antidepressant doesn’t work until weight restoration?**
Because psychiatrists are sure-fire ready to prescribe anti-psychotics during AN – which, according to a recent meta-analysis aren’t all that effective.
*Note, this is only one meta-analysis, I can produce other literature if needed
http://www.ncbi.nlm.nih.gov/pubmed/22795216
Are antipsychotics effective for the treatment of anorexia nervosa? Results from a systematic review and meta-analysis.”
Conclusion: Although limited by small samples, this meta-analysis failed to demonstrate antipsychotic efficacy for body weight and related outcomes in females with anorexia nervosa.
PMID: 22795216
Hi Anon,
Thank you for commenting and for feeling like you can disagree with the majority of the comments. I hope that others feel comfortable voicing unpopular (or what may be perceived as such on this blog) opinions.
That said, I have a few issues.
“First, parents take charge and refeed the kid to medical health. Second, parents gradually return control of eating back to the kid. If, several months after weight restoration and return of normal eating patterns, she still has problems that need professional intervention, do it then, not before.”
One, what age is a “kid”? I was living on my own at 17. What about those whose ED onset is in grade 12? University when they are away from parents? Adulthood? Are we just going to forget about everyone but the kids who have been sick for less than 9-12 months and are younger than 15 or so, like the samples in Lock & Le Grange’s studies? Please, let’s be realistic. There are so many barriers to treatment for poor kids, ethnic minorities, LGBTQ communities, etc, that by the time they get diagnosed years might have passed. And then what? What about those estranged from their parents?
Two, parents taking charge of the feeding assumes:
– Parents acknowledge a problem (my parents did not, until I told them)
– Parents realize it *is* a problem (one of my parents never admitted it)
– Parents are mentally capable of this task (no severe mental illnesses, no addictions, even just able to deal with the stress of the process)
– Parents have the money and time to be able to take time off work or otherwise take on this task (HUGE privilege)
– There are no cross-cultural barriers in understanding mental illness and even communicating with doctors
– There are no others issues like homosexuality or trans* issues that can so easily come in-between parents and kids
Keeping it simple is a privilege of the few. And it is phenomenal if it works. It is fantastic. But what about everyone for whom it doesn’t and it won’t?
“Most people are surprised to find that the so-called co-morbid conditions associated with AN are the product of semi-starvation and the anxiety associated with disorderd eating behaviors. These problems normally vanish after phases 1 and 2, above.”
This is absolutely, completely, factually incorrect. I’m happy that this seems to have been the case for you kid, though.
“Parents are the experts on their children. Strober and Johnson have never met my kid and it’s arrogant of them to think they know how to help her. Furthermore, why, as a parent, should I be expected to pay a clincian a lot of money to offer a treatment that has never been tested in a clinical trial?”
This is what your comment sounds like, but about another condition: “I think I have a better feel for how to treat my heart than clinicians do. I am an expert on my heart. Dr. X has never lived with my heart and it is arrogant of him to think he can help it.”
By the way, with regard to the treatment and clinical trials: this is the case for pretty much all psychiatric diseases. They are difficult to study for many reasons, AN in particular because of the high drop-out rates. It is arrogant of a parent to assume they know more about an illness than a clinician who has seen hundreds if not thousands of patients. Does it mean he or she knows more about your kid? OF COURSE NOT. He or she doesn’t know more about your kid. They are not the parent, you are.
But they do know more about the illness.
This is why they are called professionals. Does it mean they are all great? No. Are all teachers? Lawyers? Accountants? Surgeons? No.
It is erroneous to think that just because as a parent you have fed your kid, you can cure them of a complex mental illness. Anorexia is not about food, though learning how to eat is a crucial component, it is not the only one. It is necessary but insufficient for recovery. Instead of AN, put in OCD, PTSD, MDD, and the “logic” falters.
All of what I’ve written though, it is a reaction to your comment. It is NOT what Strober and Johnson wrote. Their article was very balanced. Did they say to remove parents from treatment? No: they actually said the opposite.
Hi there- sorry it has taken me so long to respond… in my absence, I think the sentiments and ideas of other commenters have addressed much of what I have to say about the topic. I can’t even imagine the struggle of being a parent of a child with an eating disorder- I’m currently working on a project with these individuals and the type of emotional turmoil that can accompany this situation is just incredible. However, I would like to make sure that I was clear about that fact that Strober and Johnson are not arguing against FBT/Maudsley in their article, and that they make (in my opinion) a very clear effort to inform and involve parents and patients in treatment. It is relatively rare to come across an article that acknowledges the parents and patients to the degree that is done by these authors. On the other hand, they emphasize that, being that eating disorders are incredibly complex disorders that vary widely from individual to individual, there is a strong need for skilled and experienced clinicians. I am sorry that you may have had some negative experiences with clinicians who might have made you feel alienated from your child’s recovery. However, there are clinicians out there with the knowledge, skills and experience to effectively treat and engage with individuals with eating disorders; skills, knowledge and experience that many parents simply do not possess. As far as clinical trials go, as Strober & Johnson note, though RCTs are the gold standard in psychological/medical research, the fact of a treatment having/not having been evaluated through an RCT does not mean that it is or is not the be all and end all for treating eating disorders; once again, it comes down to the fact that there is simply not one solution that fits all individuals with eating disorders. Thank you for sparking such a great discussion!
The problem I have is that parents don’t know shit about their kids. I can say that, because I’m a “kid” who’s suffered from mental illness for a long time, and once my parents finally figured it out, the way they decided to treat me did not work. Getting in fights and pushing stuff on your kid does not help. It makes them feel like they can’t breathe. My mom has my on a sort of suicide watch, but to be honest, if I were to kill myself it would be mostly because my world has gotten so cramped and stressful because people know about my mental illness. Not because of my actual mental illness. So that’s sort of stupid, isn’t it.
[I added “#2” because I’m assuming these are different Anons, at least based on IP addresses. Otherwise it gets confusing – Tetyana]
It sounds to me like anon’s comment comes from a place of frustration with the professionals – perhaps this parent has faced blame or faced being kept in the dark by treatment professionals as happens far too often?
If so, PLEASE do not write off all professionals. I’m sorry you were treated that way. It’s the wrong way to go about things. But you don’t know mental illness better than those who have spent years learning about them and working with them.
Ideally, you would be helping them to get to know your child better – while picking their brains about the mental illness. Ideally you and they could pool your shared knowledge to stand united in the fight against anorexia.
Note, this is NOT the fight against your child – this is not a behavioral issue. It’s a mental illness. Disciplining their behaviour will not heal them of the illness.
also – my mum thought she knew everything about me. She knew NOTHING. She still knows me the least of anyone in my life – because she was so busy assuming, she never got to know me. I spent my childhood wishing my mum would just try to actually get to know ME. So don’t just assume YOU know your child best because you might not know them at all.
Gulp. Parent advocate stepping into the ring alert!
Firstly, I get where Anon is coming from. Two years ago that was me. I was wrong.
I think the age of the patient is very important in all this. A 12 year old, living at home, used to getting their food prepared and eating with the family is very different from an 18 year old, away at Uni, living independently for the first time. A 16 year old, just trying out independence from the safety of home, is a really tricky one – there speaks the voice of experience.
In the main, as I think has been agreed here, most parents are good parents. The problem with an eating disorder, from a parenting perspective, is that it is so counter-intuitive. Most of us want to give our children the freedom and independence they so crave, whilst also keeping them safe. Hence why 12 year olds are not allowed to drive!
When you are faced with your child who is unable (rather than unwilling) to sustain themselves nutritionally, my instinct was to a) talk her out of it; b) force her to eat enough because she was dying in front of my eyes; c) be overcome with bewilderment, frustration and, most importantly, overwhelming fear and d) do anything – including making pacts with the devil – to ensure that she became well again. Well, heck, I don’t have to tell you that this is not the best way to help someone who is mentally ill and unaware of how sick she is.
With regards to adequate nutrition, all I can say when parents are accused of “force feeding” etc is that, if ensuring adequate nutrition is done in the right way – calm, kind but firm – it is the right way. If it is done aggressively with loads of emotions, rows and accusations, the anxiety makes it much more difficult (impossible?) for the patient to eat and is destructive.
As an parent, I wouldn’t dream of giving my child half the correct dose of an antibiotic for an ear infection. I spent many hours running round the kitchen with a plastic spoonful of “banana medicine” cajoling the girls with promises of treats if they just had it. The same goes for adequate nutrition. Half a dose is useless and stores up problems for later with antibiotic resistance etc.
I think the same principle can be applied to therapy?
I will stand up for parents and say that, mostly (and there is a study somewhere), patients do better and recover more quickly and fully with the support and help of parents. The vast majority of us are good, kind, loving parents who want to do the best for their children. I do object to all parents being maligned and slurred and blamed. This is not helpful. A very small minority of parents are awful. Children of such parents, genetically disposed to an eating disorder, are dealt a sucker punch. But to generalise and blame all parents is, quite frankly, juvenile. By framing treatment of eating disorders round your personal experience, you are going to be failing a lot of other patients. This is why I find it difficult that many clinicians in the eating disorders world have had, or still have, an eating disorder.
With regard to clinicians, I come from a “the Doctor’s always right” family. I found that not to be so true when dipping my toes into the ed world. There are some amazing clinicians out there and I have been lucky enough to work with a few. There are some truly awful ones too. The same goes for every profession. It is only by testing the waters you can find what works for you and your family. However, I still stick by no therapy is better than bad therapy. This is NOT to say that I think no therapy is a good thing. We have all benefitted from good therapy for my daughter. We were all almost destroyed by some truly horrendous therapy as well.
I agree totally with the anxiety umbrella thing (and love the whack a mole!) above. I would like to add depression to the co-morbidity list. My daughter was quite well but still depressed. Fluoxetine has been a life saver for her, both underweight and weight restored.
I do feel the need to stand up for parents. I also want to stop this polarisation. We need to work together and accept more complex ideas about ALL aspects of eating disorders, from genetics biology and environment, through dx to treatment. No patient’s path into an eating disorder is the same. Ergo treatment should be tailored for the patient, not the patient tailored for treatment. Wasting time by insisting that what worked for one patient SHOULD work for everyone else is just sucking the energy out of everyone. Complex disorders require complex solutions.
I still don’t like this article for reasons stated above and it doesn’t answer the question that was originally posed. However, I think that, in a long winded way, it has salient points that we should all consider, without assigning blame and shame to either the patient or the parent.
THE most helpful thing to the whole family was: This is not your fault; you are not choosing this. This is not your fault: you did not cause this. Starting from that point, the shame/blame/why was taken out of the equation and we could all work (mostly together) to get my daughter well again.
I totally agree with you, Charlotte. I’m sorry – I should have been more clear with my own comments. I do feel parents are MOST often good parents – and anyway,what makes a good parent? All of you are just doing the best you can, with what you know and what you have access to. Most of you deeply love your children and I can’t even imagine the agony of watching them go through the hell of ED and self destruct in front of your eyes.
I meant to illustrate that not all parents are good, that there are a few who are abusive. Not all parents know their kids even at 9, 10 years old – my mother didn’t know me. But I’m an exception. And I definitely couldn’t stand back and watch a child starve without doing all I could to save them.
With anorexia, blame is just a time waster, and there IS NO blame – it’s a mental illness. Blaming parents or anybody is like blaming parents for a child’s cancer.
I think part of the problem is that when I was that parents are not usually equipped to deal with anorexia nervosa, some parents feel I think:
– they are bad parents
– they don’t understand their kid
– automatically think professionals are better by default
None of those are true. My father is an AMAZING parent. I love him SO MUCH. He is not equipped to deal with my eating disorder. He tried to help, he worried a lot. He did his best and he actually, now, understands a lot about it, but he is still not able to help. He helps by understanding, of course.
I do think most parents are good parents, but eating disorders are not a typical, normal, adolescent phase. They are terrible and scary mental disorders with severe medical complications. I think there is a need for GOOD professionals.
Are all of them good? No! I mean, obviously, that’s not true. I’ve met lots of “ED” professionals who I think know less about eating disorders than my GP.
I think parents, just like partners for older patients, or whoever else is close to the patient, need to be involved in Tx. It is crucial. I mean, really, it is crucial. No doubt in my mind about this. Everyone who is close to the patient needs to be in-the-know. (But isn’t this the case for everything else? Imagine parents of a type 1 diabetic being intentionally kept uninformed about their kid’s condition. Unthinkable! It does unfortunately happen with EDs, but it needs to stop.) But that doesn’t mean they should be in charge of the whole thing, or take on the responsibility of refeeding.
Those ideas above are offensive. I know good and well that my anxiety disorder, and possibly a mood disorder, preceded my eating disorder by many years. The idea that those two things would have disappeared with weight restoration when I was in junior high/high school or later when I lived in Houston is laughable. And in the periods of time in the past 16 years that my ED was more or less on the back burner? Other behaviors (like self harm and substance abuse) became worse as I tried to deal with the depression and anxiety that was still present. Because even though my weight was well within normal range, I was still extremely depressed and anxious–and by that point, I also had the diagnosis of Borderline Personality Disorder.
Also, had my parents tried to make me eat when I was in junior high or high school? All hell would have broken loose. My mom couldn’t even get me to see a therapist until I finally chose to go at the age of 19.
And I’m sorry, in no way were my parents experts on me past the age of about 5 or 6. There was so much shit I didn’t tell them (or anyone else), that I kept bottled up inside. I tell my mom things now that I thought or felt in elementary, junior high, or high school and she is shocked, because she had no idea. Maybe *some* parents are the experts on *some* children, but people with EDs tend to lie about their ED and other things in order to hide the behaviors. Many parents don’t know about it until the child is obviously underweight, and if the child had always been small to begin with, if she (or he) doesn’t become emaciated, the parents STILL might not notice.
Oh, to be more clear, I’m not blaming my parents in the least. Without me talking to them, I think it’s understandable that they were fairly clueless, especially considering I never became emaciated. I was underweight and unhealthy, but since my parents saw me every day and I had been a small child, they didn’t really notice. My mom told me recently that she had been looking at some old pictures, and she can see now that I was way too thin in high school.
I don’t even blame my parents for not forcing me into therapy when I was in junior high or high school. My mom started suggesting it when I was 14ish because I was so anxious and having panic attacks (and clearly unhappy), but I was (and am) an extremely stubborn person….and, to be honest, manipulative too. My parents weren’t really capable of forcing me to do things, and I don’t blame them for that.
And I’m not saying that parent/family support isn’t important. It’s very important, especially if the patient is still living at home. I’m 28 and am currently living at with my parents, which means, even though I’m definitely an adult, the support of my parents is important in my recovery.