How to support someone with an eating disorder?

21st January 2008

How to support someone with an eating disorder?

posted in Eating Disorders, Family Issues |

A Glamour magazine story featured on MSNBC has raised a question not often discussed here: How do you best support someone who has an eating disorder?

When Tom Cramer’s wife Meg developed anorexia nervosa as an adult mother of two young sons, Cramer admits he didn’t know how to handle her illness.

My arrogance also made me think that I could fix things. As an engineer, I identify an issue and find a solution. “I can handle this,” I told myself. There was, after all, a simple answer: Meg needed to eat more, and I thought I could persuade her to do that.

But as Tom finds, “anorexia does not have an on/off switch.” The more he pushed his wife to change, the more she pushed back, he writes. It would take his wife’s hospitalization before Tom realized the problem was about much more than food. And in order to understand his wife’s illness more, Tom embarked on a week-long experiment to starve himself, with some surprising results.

I was exhausted and irritable; my head ached constantly. I’d lie in bed at night and think, I am so hungry! How does she do it? How can the voice Meg hears be so powerful?

But by day three, I began hearing the voice too: “Come on, you can do it. Don’t give in. You’re better than that.” When I refused food, I had a sense of victory. The longer I resisted, the more powerful I felt. When Meg was admitted to the hospital, I thought that she had failed and allowed this to happen. Now I understood the seduction of the words in her head, how they could override the most basic human survival instincts.

Luckily, Meg Cramer recovered and is now at a healthy weight today, although she says she still struggles with vestiges of anorexia. As Tom aptly sums up, “We don’t say we’re over anorexia, we say we live with it.” In the world of eating disorder recovery, this is a milestone, indeed.

In an article sidebar, Tom Cramer gives some helpful advice (below) for friends and families of loved ones battling an eating disorder:

1. Express your concern without blame. “I must have told Meg a million times, ‘This would all go away if you would just eat,’ ” says Tom. Instead, the Cramers’ therapist, Anita Sinicrope Maier, advises using “I” and not “you” language: “Say, ‘I love you and I am scared I will lose you.’ ”

2. Seek professional help. “I wish I’d called a doctor before Meg wound up in the E.R.,” Tom says. “With the support of an expert, maybe I could have gotten through to her sooner.” Ask your own doctor for a referral or contact The National Eating Disorders Association at 800-931-2237.

3. Show unconditional love and support. Nagging, criticizing, threatening — all of these may just push someone with an eating disorder away. Provide consistent support and understanding, experts agree, and she’ll be more likely to turn to you when she’s ready.

The blog Hungry for Hunger (now accessible by invitation only) posted some stellar advice last November. Read Charlynn’s take on some of the recommendations at Disordered Times. ANRED also has posted helpful do’s and don’ts here.

To this list I would add (from my own experiences):

1. Respect privacy. Be aware of the eating disordered person’s condition and progress, but don’t make it seem as if you’re watching them like a hawk.

2. No one needs a food monitor. Don’t be “helpful” by pointing out which foods are healthier and which aren’t - there are no good foods and bad foods. In fact, don’t make any comments period on what your loved one does or does not eat at all. And never try to force someone to eat. While you may be successful, it may lead the eating disordered person to embark on dangerous compensatory measures to rid themselves of the food.

3. Talk about other things. We are much more their our illnesses, and discussing other things not only helps remind the disordered person that life is more than food and weight, it probably comes as a welcome respite for someone who spends an inordinate amount of time obsessing on these things already.

4. Research the disease and arm yourself with knowledge - it shows the disordered person that you’re genuinely interested and helps you understand their struggles. Join a support group of others struggling with the same issues you are or if one doesn’t exist, start one up.

5. Don’t be patronizing. While people with an eating disorder may not be making rational and healthy decisions due to malnutrition and the disease, they are not stupid or ignorant. Treat them as active participants in their recovery.

6. And most importantly, provide a good role model. Examine your own eating habits - Do you diet constantly? Do you make self-deprecating comments about your body, even in jest? Do you make judgments about others based on how they look or what they eat? None of this is even remotely healthy or encouraging for either yourself or your loved one trying to recover from an eating disorder.

What would you add to this list? How do you best support a loved one struggling with an eating disorder?

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This entry was posted on Monday, January 21st, 2008 at 11:47 am and is filed under Eating Disorders, Family Issues. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.

1 On January 21st, 2008, Ell

said:

Encourage them to talk without pushing. Many people with eating disorders feel that they aren’t “disordered enough” to seek treatment, “waste” insurance coverage or money, or call their emotional problems an eating disorder. Many feel that talking about it will make them sound shallow or conceited. Encouraging them to talk about what they’re going through may help them get stuff of their chest or realize that their problem is worthy of concern. Don’t nag, instead provide an open, loving, caring environment. Most of all, don’t brush off their problems as unimportant or not that big a deal, especially if they are of a “normal” size (whatever “normal” means - I guess not morbidly obese or seriously underweight)

posted on January 21st, 2008 at 12:09 pm

2 On January 21st, 2008, OhYeahBabe

Wow. Thank you. Those tips are rough - they tell you to avoid doing what comes most naturally! See a problem, point out solutions. I can see why this doesn’t work, but it’s still a hard thing to avoid!

posted on January 21st, 2008 at 3:17 pm

3 On January 21st, 2008, Kyla

Good list. I especially like no.6

posted on January 21st, 2008 at 7:11 pm

4 On January 21st, 2008, Lanette

Thank you for sharing these tips. They also apply to ALL eating disorders. As someone who has long since struggled with emotional eating, I wish that these tips were more well known.

The food police is always a harmful role. I can remember so much of the “should you be eating that?” or “what you got there? Is that on your diet?”

posted on January 21st, 2008 at 8:41 pm

5 On January 21st, 2008, Harriet

Rachel, you know what I’m going to say, I’m sure.

I couldn’t disagree with this more–most emphatically if the person with an eating disorder is a teenager or young adult. A parent MUST get involved. Must be the “food police.” Must NOT sit at the table with a child or young adult who’s starving herself and talk about other things.

When someone is nalnourished, it IS about the food. It’s all about the food, as Tom Cramer discovered. The voice he heard wasn’t because he had control issues or autonomy issues or had been abused as a child or whatever. It was because he was HUNGRY. Now take that and multiply by about a million. Imagine someone who’s malnourished for months or years. Imagine the power of that voice.

Then tell me the best thing to do is not bring it up, not push, not do everything in your power to get that person to eat. The research on this is very very clear: Adolescents and young adults can recover fully relatively fast when they are fully weight restored within three years. To not do this is nothing short of a crime. It condemns the sufferer to years and possibly a lifetime of incredible suffering–and it doesn’t have to be that way.

Personally, I don’t care if the person’s 15 or 55. If I care about them I’m damn well going to do everything in my power to get them to eat. If there are psychological issues–and I say IF because there aren’t always, especially with teens and young adults–they can be dealt with after weight restoration in whatever way is best for the sufferer. But you know and I know that someone in the grip of anorexia cannot eat. They need help. To not give it is unacceptable.

Had Mr. Cramer felt empowered in a different way, had he had the support of medical professionals and other family members, he may very well have been able to help his wife recover–and recover fully, which she clearly has not done. Psychological and mental recovery follows physical recovery and usually does not come until someone is at a truly healthy weight for 3 to 12 months. Staying at a low weight that’s considered healthy for a non-e.d. person won’t do it.

I hope Meg Cramer gets the rest of the help she clearly needs. She doesn’t have to live with this for the rest of her life. To condemn her to that is truly cruel. And to desprive her or anyone of the love and support of her family members is awful.

Actually this case is a good argument against the notion that screwed-up families are the cause of eating disorders, since no one is saying that Mr. Cramer somehow caused his wife’s e.d. We all know there are messed-up families out there. But I bet most of them are functional enough to be able to help a family member in this kind of trouble.

You know what messes a family up but good: Watching a teenager suffer with this for years. Cleaning up after them, physically and metaphorically. Going through the cycle of relapse-partial recovery-relapse. That would screw anyone up. Until you’ve been through it, you can’t know.

posted on January 21st, 2008 at 10:12 pm

6 On January 21st, 2008, Jeanne

Hello Rachel,

Great additions to the lists!

My addition would be to understand that there are no “small” accomplishments. Every bite that is eaten for nourishment and not purged (in one way or another) is HUGE and should be celebrated and praised to the skies. The sufferer may demure/cringe/deny, but praise them anyway for the amazing amount of effort that one bite took.

Thank you, Rachel!!

jeanne

posted on January 21st, 2008 at 10:33 pm

7 On January 21st, 2008, Rachel

Harriet - There is quite a difference in encouraging a loved one to eat and force-feeding them. Numerous studies have shown that force-feeding anorectics in particular is often futile, and even weight restoration doesn’t work unless it is followed up with intensive treatment and therapy to address other issues associated with the disease. As you’ve reassured me before, even the Maudsley approach doesn’t feed ‘em and leave ‘em.

And even if you do proposed force-feeding someone with an ED, can you realistically watch that person 24/7 to ensure that they don’t vomit it back up?

As I noted, my recommendations were from my own personal experiences with an eating disorder. For me, having my loved ones act as a food nazi actually encouraged me to go in a negative and unhealthy direction. They pushed, I pushed harder. Perhaps this is because I developed an ED as an independent adult who had long flown the nest, but for me (and others, I’m sure) having a loved one act as a food monitor isn’t helpful; it’s hurtful.

They need help. To not give it is unacceptable.

I wholeheartedly agree, but I think you also have to understand that there is no classic eating disorder case; they vary with the individuals who develop them. What may help one person may be detrimental to another person.

posted on January 21st, 2008 at 10:46 pm

8 On January 21st, 2008, Harriet

Rachel,
I don’t know what you mean by force-feeding. Show me the studies you’re referring to. And I’ll show you the studies that show that insisting on full nutrition leads to full recovery.

Do you watch someone 24/7 to make sure they don’t purge? You sure do. That’s what in-patient places do, isn’t it? You watch and you care and you do what you know they need.

Someone in the grip of anorexia really can’t “choose” to eat. It’s cruel to predicate recovery on such a “choice.”

You call it “being a food nazi.” I call it “saving my daughter’s life.”

Your word choice shows me that you don’t actually understand family-based treatment. And while I respect your personal experiences with an eating disorder, they do not represent the entire picture.

And no, I don’t agree that what may help one person hurts another, at least not when it comes to malnutrition. It’s really very simple: Your brain doesn’t work right when it’s malnourished. The more starved it is, the less it works. To recover, an anorexic has to eat. There’s no other way. There’s no other magical formula for recovery.

I fear your views are not rooted in the evidence or the research.

posted on January 21st, 2008 at 11:08 pm

9 On January 22nd, 2008, stephanie.

to both harriet and rachel:

one of the first things i would add to the list is the concept that eating disorders differ from disordered eating, and one of the most important things to point out to someone with an ed, especially AN, is to tell them about how it ruins your health. not just ruins your health - is life-threatening. hospitalized eds have some of the highest (if not the highest) fatality rates out of any disease. that is terrifying. that it afflicts seemingly without boundaries (men are becoming more and more susceptible) is even more terrifying.

in the recovery period, the most important thing to have an ed person do is come back into touch with their hunger. so often they don’t understand what hunger is - they have repressed the feeling for so long they no longer feel it, or they are convinced that they are hungry when they are not.

i would also agree with rachel that being a “food nazi” is not necessarily the best avenue for recovery. if you look at most of the data that comes out of inpatient units, relapse is high high high. most girls will only gain until they can get out - as soon as they are out, they start starving again. it’s only when you break the cycle of WHY they aren’t eating that you can make progress.

yes, harriet, there is the threshold in which the brain cannot function and think rationally. that is usually when they drag in the feeding tubes and start, literally, force-feeding. a person often has to maintain a certain weight in order to be treated by a psychologist . . . but at the same time, the psychologists/doctors DON’T stop at just the eating.

as for family-based treatment, one of the major triggers to ED IS the family. often times it is a way for girls to try to gain approval from their parents/parental figures, show they are sick/unhappy without using words, etc. at other times, it is the only thing that a person who feels out of control can control. the family IS essential often in rebuilding and the ed recovery period, but they can’t be it.

recovery is defined by weight gain, but unless the psychological issues are dealt with that are the core of why you are/aren’t eating, relapse is just going to happen again and again.

i highly recommend reading hilde bruch’s “the golden cage” for a really early look at AN that holds true. there are some other classics out there as well - joan brumberg’s “the body project” is amazing, and “thin” is a much better book than documentary. i also recommend everything on the “something-fishy.com” website, which is dedicated to recovery -

one of the most important things i think for someone with ed to realize is that they are in control of their lives, and that they are the only ones that can save themselves. girls manage to purge on inpatient units all the time. not to mention the laxatives and all the other ways of getting food out . . .

posted on January 22nd, 2008 at 12:25 am

10 On January 22nd, 2008, Carrie

I agree (by and large) with Harriet. However, the role for a spouse or partner is going to be quite different from that of a parent. If it’s a husband/wife relationship, there will need to be much more consent for monitoring, etc, on the behalf of the sufferer.

My parents did use a Maudsley inspired approach with me. I consented, though under threat of hospitalization and a return to treatment. Part of it worked because it was backed by a sort of parental ‘authority’ (even though I was 26 at the time — I’m 27 now); the other reason it worked was because I let it. I was a willing partner. Grudgingly willing, to be sure.

With the kind of monitoring Harriet is talking about, just watching the person may not be enough. What happens if they do purge? If they are found to be water loading? What then? Nagging doesn’t work, for eating disorders or not. But guidelines and boundaries and consequences (not punishments, but consequences) may provide enough support.

posted on January 22nd, 2008 at 2:30 am

11 On January 22nd, 2008, Carrie

Stephanie,

I like Joan Brumberg’s book, but I’m no fan of Hilde Bruch. I found the “Thin” documentary/book quite disturbing and put it down after the first 5 pages.

I am well on my way to recovery (healthy weight for about 8 months), but I don’t know that I have psychological issues to deal with. I don’t know that there is a reason why I got sick. For more on my thoughts on this subject, go here:

http://ed-bites.blogspot.com/2007/12/food-and-feelings.html

There is a time when a sufferer has to help him or herself, but in a hospital and/or in an acute stage of malnutrition *isn’t it*. Yes, sufferers purge and restrict in IP units. Been there, done that. I’ve pulled some classic stunts. But the whole thing of a 26 year old woman hiding food and barfing into a fake tree means that I needed that monitoring. I couldn’t keep myself safe.

I do hope you understand that I respect your views, even though I don’t agree with them.

posted on January 22nd, 2008 at 2:38 am

12 On January 22nd, 2008, Rachel

I fear your views are not rooted in the evidence or the research.

Ah, yes. What does someone who’s actively and to a large degree, successfully, battled both anorexia and bulimia, predated by two decades of disordered eating, know or have to say about eating disorders or eating disorder recovery?

I appreciate your views Harriet, I truly do. And I’m glad that Maudsley worked for your daughter and that she seems to be doing well in her recovery. But I am off-put by your persistent refusal to recognize that the approach may not work for everyone, and I’m offended by what I view to be rather callous remarks from you.

One of the largest obstacles I see to eating disorder research and treatment plans is that doctors and researchers (and well-meaning activists like you) don’t really listen to people who have first-hand and intimate experiences with an eating disorder. It’s patronizing, it’s paternalistic, it’s insulting, and it’s offensive. But mostly it’s tragic, because what results is an incomplete picture of an eating disorder from the people whom it impacts most and who have the most to contribute to an understanding of the disease. And while outsiders may enjoy some vantage points eating disordered people don’t, I think most people with an eating disorder will agree: Non-ED people do not and cannot *get* the full nature and ramifications of an eating disorder.

But then again, what do I know. I mean, I’ve only been to eating disorder hell and fought my way back. What I say couldn’t possibly have merit because some researcher or doctor hasn’t released an official study on it yet.

posted on January 22nd, 2008 at 2:46 am

13 On January 22nd, 2008, Laura Collins

The advice to not be the “food police” (or Nazi, or “force feed”) is bad advice.

It is like saying to an asthmatic’s family “don’t be the air police.” Or to a diabetic child’s parents, “don’t be an insulin Nazi.”

Food — full daily nutrition — isn’t an optional thing. And you don’t need to be “dangerously thin” to trigger horrible mental symptoms that make it impossible to self-regulate. Food isn’t optional at clinics, therapists don’t want their clients not to eat — at home or elsewhere SOMEONE has to be the “food police” if the patient can’t.

Parents and loved ones who are freaking out around ED patients when they don’t eat — or purge — are freaking out for a good reason. Sitting by and watching someone restrict or purge is like talking about the weather while your child shoots up heroin at the table.

The advice to not be the Food Police has been used by ED to keep parents and loved ones at bay for too long. It is ED’s favorite tool.

Harriet isn’t saying Maudsley is the only way, and trying to dismiss these complex ideas by making it about Maudsley or about Harriet or about parenting is sad.

posted on January 22nd, 2008 at 7:26 am

14 On January 22nd, 2008, Harriet

Rachel,
I *never said* Maudsley was the only way. You’re distorting my views.

And while I absolutely respect your time in hell with eating disorders–and I truly do, I have a lot of respect for you–personal experience does not translate automatically to research findings.

You can’t show me the research because it doesn’t exist. That doesn’t mean you’re wrong; maybe, as you say, it hasn’t been done yet.

But why do you persist in ignoring the research that *has* been done? It seems to me you have a strong bias against the idea of family-based treatment and seek to marginalize it whenever possible.

If standing on my head for a year meant my daughter would recover, I would do it. And be thankful there was *something* I could do, whether I liked it or not, and whether I understood it or not.

Why is it so very threatening to think that not everyone with an eating disorder has deep psychological issues? I would think this information would come as a relief. Sure there are people for whom weight restoration is only the first step. And I would argue that most teens can benefit from good therapy.

But that’s a far cry from saying that eating disorder necessarily means pathology. I’ve seen many kids at this point who fall into anorexia, are weight restored relatively quickly, and just get on with their lives. What’s so threatening about that? I think pathology is often a function of duration of illness. If you’re sick for 5 or 7 years, you’re much more likely to have some psychological issues *as a result of the disease.* You may or may not have had some to begin with.

WI suspect you might feel differently if you had a child with an eating disorder. I truly hope you’re never in a position to find out.

posted on January 22nd, 2008 at 9:35 am

15 On January 22nd, 2008, Longhairedweirdo

For those wondering about how it can help to avoid directly addressing the issue, consider basic human nature. If you’ve feel you should do something (for whatever reason), and someone tells you “do something else!” isn’t it normal and human to get defensive? And if someone is always battering on you, well, isn’t it normal if you get your back up and feel that much more stubborn?

Force and direct attacks from the outside don’t work on most mental and emotional issues.

Some of you might know of the good effects shown by cognitive therapy, which looks like “direct attacks” on negative emotions and thoughts by challenging them, and that’s true, that is how it works… but those attacks come from the *inside*. You get the person to make the challenges. It’s a completely different perspective; rather than giving up in the face of an attack from outside, the person is fighting for an internal victory over the forces causing problems.

I’ll grant that there are times when one might have to use force to save a person’s life, to have the person committed as a danger to themselves, but if the problem is going to be solved, it’s going to require a change on the inside, and that can only come from the inside.

All IMHO, and so forth. I am not a doctor (not even a student, yet), but I am studying psychology, so this is not an uninformed opinion.

posted on January 22nd, 2008 at 12:02 pm

16 On January 22nd, 2008, Rachel

Harriet - It’s not that I can’t point to the evidence on force-feeding. It’s that I was commenting at 2 a.m. and all I really wanted to do was get some sleep before the alarm rang five hours later. I’m working now, but I will post more on the above later tonight when I have time.

I don’t discount Maudsley at all - in fact, I even referred a parent from Disordered Times to you for more information on the approach. I recognize that Maudsley works for a certain subset demographic of people with eating disorders, namely young and underage girls. And it’s especially beneficial for those whom the disease is biological and pathological in nature, those who don’t have the entanglements of emotional and mental baggage. I do doubt its effectiveness with adult women and for those whom family issues are entrenched with their illness. I encourage you to show me some long-term studies where Maudsley has successive in these types of cases.

Why is it so very threatening to think that not everyone with an eating disorder has deep psychological issues?

It isn’t threatening and I’ve often posted about the organic origins and pathological interrelations of the disease. But my personal experiences, as well as my vast graduate research on women and food-related disorders and interviews with eating disordered women themselves, leads me to believe that eating disorders are often much more complex in nature than a case of misfiring neurons or malnutrition-induced behaviors. For some this is the case, as your daughter’s situation clearly illustrates. But for many women (and increasingly men) our relationship with eating and weight is much more cerebral and emotional in nature.

I also wonder if our connotations of “food police” and “food nazis” are different in nature (I wish I hadn’t made the Nazi reference; I generally frown on using this as an analogy). By force-feeding I mean physically forcing someone to eat through brute strength and I’m referring to people outside of in-patient treatments. There were times after I ate that I would stop at no measure to rid myself of the food. I tore my esophagus once trying to vomit lettuce. Yes, lettuce. My use of syrup of Ipecac (what killed Karen Carpenter) damaged my heart. In some cases, the compensatory measures people use to purge food pose more of an imminent physical danger than starvation itself. By forcing someone to eat, you are creating a situation in which they may resort to such drastic measures as these because they feel no other choice.

I should also point out that my recommendations are not solely for those caring for anorectics. I think they hold true for people suffering from all kinds of eating disorders.

posted on January 22nd, 2008 at 2:27 pm

17 On January 22nd, 2008, Andrea

Hi! I found this site from the NYTimes article and came out of curiousity, and I’m really happy I did! This is a very thoughtful article that gave me something to think about.

I have just one more tip to add- Don’t complain about how much food is costing. When I was having problems with an ED, I had a boyfriend who kept complaining that the only things I would eat cost too much. He was used to eating fast food all the time, but I just couldn’t handle that at the time. This makes it harder for someone with problems, since I think we already feel pretty guilty about food and embarrassed about consuming things.

posted on January 22nd, 2008 at 7:34 pm

18 On January 22nd, 2008, J Maria

Having scanned the comment thread so far, I’d like to point out that “eating disorder” is NOT synonymous with anorexia nervosa. Anorexia IS an eating disorder, but it is not the only one, nor the most common one.

Which one is most common? “Eating disorder not otherwise specified”. *sigh*

posted on January 22nd, 2008 at 7:59 pm

19 On January 22nd, 2008, Rachel

I’m back, with “official” information validated by real and official doctors and researchers to support my lowly personal experiences.

FBT = family based therapy
AN = anorexia nervosa

First, on subject of Maudsley and FBT. You are absolutely right Harriet: The studies of FBT are very promising and do indeed show high rates of success. But let’s deconstruct these studies to show exactly whom they’re most successful for. Most studies on FBT are small in nature, and are conducted on a particular demographic of eating disordered patients, namely adolescent females who are in the early stages of an eating disorder. Its success with this eating disordered subset may be due to a variety of reasons: Adolescents are not chronically ill; they are more easily compelled to receive treatment because they are dependent minors; and the disease is caught in its early stages.

It should be noted that many of these studies have also noted several problems with the treatment of adolescents: Comorbid psychiatric illnesses and family problems increase dropout rates and decrease response rates.

Studies of adults who are treated with FBT are not as optimistic, and nearly every FBT study I read includes a caveat that its findings may not be consistent or applicable to adults with eating disorders. In a Sep. 2006 study, Dr. James Lock specifically concluded that in cases of adults, “FBT may be no better than individual therapy.”

James Lock, MD, PhD, “The Role of Family Therapy for Adolescents with Anorexia Nervosa,” Psychiatric Times. (Sept. 2006) Vol. 23, Iss. 10; pg. 46.

Even when weight is restored, eating disordered patterns and behaviors persist. In a study conducted in August of 2005, researchers found that patients with AN showed a “persistent disturbance in eating behavior, despite the restoration of body weight and significant improvements in eating-disordered and psychological symptoms.”

“Although most hospitalized patients with AN in our program and other programs respond to treatment, the nutritional restoration that occurs on an inpatient unit does not necessarily resolve the core eating difficulties for patients with AN. This continued vulnerability during the period after inpatient hospitalization is exemplified by significant relapse rates among patients with AN [between 30% and 70%].”

Robyn Sysko et all, “Eating behavior among women with anorexia nervosa,” American Journal of Clinical Nutrition, (Aug. 2005) p. 296.

Which leads us to the etiology of an eating disorder. As I noted before, I do recognize that there exist cases like your daughters in which the disease is purely organic in nature, exacerbated by malnutrition-induced behaviors. But not all. As I stated before, if you really take the time to listen to a person with an eating disorder, you will find that often times, they are often incredibly self-aware of their disease and the triggers and forces behind their actions. Anorexia claims many of our best and brightest – these are not stupid people.

People with an eating disorder, especially anorexia, are often incapable of stopping many of the behaviors, but this overlooks a very crucial and often unconsidered fact: Many people with an eating disorder don’t want to get better. They like what it is they’re doing. If I could have my eating disorder back, minus the depression, health hazards and negativity associated with it, I would, even today.

Missing in most studies on eating disorders is the personal perspective of patients on the causes of their eating disorder and the factors that have contributed to their recovery. As of 2003, only three known studies considered patients’ opinions about their eating disorders.

Researchers who conducted such a study in 2003, found that the most commonly reported perceived causes of eating disorders were dysfunctional families, followed by weight loss and dieting and stressful experiences and perceived pressure.

More than one-third of patients highlighted family dysfunction as a contributing factor to the development of their eating disorder. This category included family features such as poor parental care/childhood deprivation, parental overcontrol, poor relationship with parents, pervasive family tension/fights, and emotional abuse.

Frederica Tozzi, et all, “Causes and Recovery in Anorexia Nervosa: The Patient’s Perspective,” International Journal of Eating Disorders, Vol. 33, Iss. 2 (March 2003), pp. 143 – 154.

There is no “typical” anorexia family, but other studies too point to family dynamics as formative in an eating disorder: A family history of AN (Strober, Lampert, Morrell, Burroughs, & Jacobs, 1990) or other weight issues (Halmi, Struss, & Goldberg, 1978; Steiger, Stotland, Trottier, & Ghadirian, 1996) and other psychiatric disorders such as depression and anxiety disorders (Lilenfeld et al., 1998; Ra˚stam & Gillberg, 1991) are more common in the family members of women with AN than in the family members of control subjects.

Eating disorders are vastly complex, as diverse and varied as the men and women whom they afflict. This may be why the research and evidence out there supports a wide platform of ideas and approaches.

posted on January 22nd, 2008 at 10:34 pm

20 On January 22nd, 2008, stephanie.

carrie -

i very much appreciate your comment, and also your link, which leads me to believe that somehow i didn’t make myself clear on what i meant by the fact that food was not really the issue.

because first off, i don’t despise the word “pathology”. second, i hate the medical model of psychology. me and the DSM? not good friends. mostly because i was consistently told that i had AN, and then later ED NOS (which i took better) simply because my weight was so low. i also have friends that *wanted* the AN dx, but didn’t get it because they did not “achieve” amenhorria, or the certain % of body mass. but lordy, i was an unhealthy person when i graduated from college. i weighed next to nothing, and i am tall. but i never thought i was fat, i never thought i needed to lose weight, i never even consciously decided to restrict. i simply lost my ability to read my body’s signals for hunger because i was fundamentally so anxious. and unfortunately, my anxiety manifests in my gut most of the time (some people, it’s headaches, and so on) and so i spent most of the year nauseated on top of that. i’d eat whenever anyone else ate. i still had favorite foods. i knew i was underweight and stopped exercising until i gained enough back. i went to a nutritionist to try to gain. and for a long time, it was the meds i was on that restricted my gaining, but.

i completely agree with your point that things aren’t solved when the weight is put back on - and i think it’s important to note that your ED was, as is so often the case, comorbid with another illness - combined with perfectionism.

by saying that food isn’t the issue, something psychological is, i meant things as simple as “i feel out of control and i can control my weight.” there’s nothing pathological about that. or even chronic dieters. the faulty belief that “i will be happier if i just lose five more pounds” is stimulated by the initial unhappiness - and until that unhappiness is solved, the weight is not the true issue.

i do think intervention should be done before hospitalization/IP. but i think asking the parent or spouse to be the food monitor puts that person in a very difficult position. yes, you are doing it out of love, but like you said yourself, it can’t stop with just the food. my mother worked her way out of AN because she miscarried, but my dad said the most important thing he had to realize was that he couldn’t force her to eat. because he couldn’t be there 24/7. and even if he could, there would be a time when he wasn’t there. and that it wasn’t that she wasn’t eating to make him unhappy - that it really had nothing to do with him. i think expressing concern, and having a working relationship between the primary caregivers and the treatment team is absolutely and completely essential.

can i ask about your aversion to the sources mentioned? or what sources you *do* find good? i hated the “thin” documentary, but thought the book was much better. of course, it’s in-your-face about what it is, but then again, so is walking around with a feeding tube in your nose . . .

posted on January 22nd, 2008 at 10:58 pm

21 On January 22nd, 2008, stephanie.

this is a note to rachel and anyone else -

for truly excellent research (seriously randomized controlled trials, etc.), you really should check out lock and legrange’s work. they have been especially important in the field of adolescent bulimia, and take a family-based approach, which is especially, especially important in about 95% of the bulimia cases out there. “treating bulimia in adolescents” is an amazing (if a bit dense) book, that has ramifications across the entire ED spectrum.

but they are very careful to say that this approach has not been tested beyond the adolescent age group. and that is something that not enough people pay attention to, it seems, the different manifestations depending on age. (”lying in weight” in a pretty good take on EDs in middle-age women.)

i was lucky enough to hear l&l speak this past summer at the APA conference and they were fantastic. everyone on that panel was amazing - i’ll pull their names if anyone is interested.

oh - and a side note to carrie (and everyone else) - you noted in your entry that you needed skills, not necessarily the answer to “why”. i would ask if you have ever heard of dialectical behavior therapy, which is a treatment modality first developed by marsha linehan in 1993 to treat women with borderline personality disorder. it’s now being tried in different arenas, and has successful RCTs for adolescent suicide and addiction, and they are seriously close to being able to publish about their work with EDs. (linehan is a firm, firm believer in EBTs, and won’t publish if the research isn’t there.) DBT goes a step further than CBT in that it makes the person aware of the cognitive dissociations, etc, but then gives concrete, easy-to-use, five-million-and-one different skills to use to deal with the disparateness without resorting to (usually) impulsive behaviors - restricting, parasuicide, gambling, etc. if you haven’t checked it out, it’s truly fascinating. and that has nothing to do with the fact that linehan is my personal guru.

posted on January 22nd, 2008 at 11:07 pm

22 On January 23rd, 2008, Laura Collins

It is too bad that a discussion on the Food Police issue becomes a discussion of FBT/Maudsley.

This is really about the role of food in eating disorder treatment.

I believe food - full nutrition - is the foundation of eating disorder treatment. (for AN enough food, for BN and BED enough food in a regulated pattern)

The history of ED treatment has been one of putting patients in charge of their food regulation until they are so sick they are hospitalized (or worse). I think that is a history of failure.

And that failure has led to generations of sufferers, and former sufferers, who have developed (or been taught) misguided “reasons” for their illness. If you ask most Alzheimer patients about their home lives it isn’t a pretty picture. Same with what TB patients used to believe about their illness before they discovered Mycobacterium tuberculosis.

ED patients often cannot choose recovery. They need outside authority to stabilize them long enough to truly recover. Ideally, that is as early as possible and done in the home. If that hasn’t happened, then it comes from the hospital staff or inpatient facility. But someone has to be the “Food Police” because the food isn’t optional. The only one who thinks it is, is ED.

posted on January 23rd, 2008 at 8:07 am

23 On January 23rd, 2008, Rachel

Laura: I’m not disputing the role of food in eating disorder treatment. I’ve posted before on how a malnourished brain will not respond as effectively to treatment. Obviously, if you’re starving, your brain isn’t functioning correctly.

What I am questioning is the role family members play in this treatment. My suggestions in question are drawn directly from my experiences as an adult-onset eating disorder case. Obviously, there will be vast differences between an eating disordered person who is 30 and one who is 12. While food monitoring may be applicable to and successful for adolescents, infantilizing adult women isn’t likely to be fruitful or productive. And yes, standing over someone demanding they eat, with the threat of the removal of privileges and/or hospitalization until they do, is, in essence, infantilizing someone.

An eating disordered person does not need a food police telling them which foods are healthy and which aren’t. Eating disordered people know far more than the average lay person about nutrition; they just choose not to follow it. We know the differences between nutrients, we know what foods are healthy, we know what it is we ought to be eating. We know this because this is all we do and all we read. We are not stupid people.

For me, having other people nitpick and nag over what I did or did not eat only served to further distance me from those people and encouraged me to do the complete opposite of what it is they were advising. Since I was an adult and therefore not answerable to anyone, I had complete liberty to do as I pleased, unlike your adolescents who are dependent upon parents.

Having someone say “You’re eating that?” when I did indulge in, say, pizza, or having someone say “Is that all you’re eating?” only made me even more self-conscious and anxious about food and eating. And when someone successfully urged me to eat foods I was uncomfortable eating, I would take dangerous compensatory measures to rid myself of the food afterward. This is what I mean by being a food monitor and this is what I feel is unhelpful to people who have eating disorders experiences similar to my own.

Food is only one part of the eating disorder equation. Weight restoration isn’t a panacea for eating disorder recovery; as the studies above have noted, there often exist other core issues that need to be address to prevent relapse. These core issues are what I feel many proponents of FBT deny.

posted on January 23rd, 2008 at 10:31 am

24 On January 23rd, 2008, Laura Collins

We’re getting somewhere when we separate, as you have, preventing relapse as opposed to cause. I like that.

Eating disorders usually first surface during adolescence, and most adult sufferers first discovered their tendency toward disordered eating and thinking in adolescence.

That is why I, and others, use FBT/Maudsley as a starting point. Like a tumor, we have to try to kill the cancer when it is small - before its advanced size and spread have worsened the health of the whole person.

I wish we could offer Food Police for adult sufferers. I think they’ve been let down and forced (by our misunderstanding of the nature of the illness) to suffer without effective help. But society, and a treatment environment that still sees EDs as a choice - and a logical one - protect ED instead of the patient.

I’m sorry the people around you were ineffective and unhelpful in their attempts to help you. They misunderstood the illness, and underestimated the hell you were experiencing. Better training, better understanding of the illness, more compassion — may have left you more compassionate as well. Toward yourself, and toward family members like me who are simply trying to say “we understand, and we care, and we aren’t going to let you destroy yourself.”

posted on January 23rd, 2008 at 11:46 am

25 On January 23rd, 2008, P-Doggies

I was a psychologist for 20+ years and one of my specialties was ED. Oh, and surprise, surprise! I struggle with my own version of this hell (ED NOS). My two cents on this issue is that reliance on “where’s the research?” is a huge waste of time, for two reasons: First, research outcomes are manipulated all the time (Vioxx, anyone? Vytorin, anyone?). Second, as someone who DID research in order to pursue tenure, etc., I can tell you that things like randomized blind trials etc. work well in the sciences but the mental health field is not a science, is an ART. Human psychology cannot be reduced to “people are the X variable and when exposed to Y treatment will behave in Z manner.”

If scare tactics worked (e.g., “Food police”) for the majority of folks, then teenagers would no longer smoke cigarettes or take drugs or drive over the speed limit. Some folks (myself included) will rebel like hell when confronted with “if you don’t eat, we’ll punish you somehow” even if it’s “for my own good.” Some folks will respond well to that kind of intervention. My piont is that you can’t take an off the rack intervention that worked on some tv movie of the week or in one author’s book or study and apply it to everyone. Psychology–GOOD PSYCHOLOGY–doesn’t work that way.

(And that is the major reason I left the field, because our ability to creatively help our struggling human clients was being choked by the one-size-fits-all mentality of DSM, BigPharma, insurance companies, and fellow psychologists who saw their sphere of influence dwindling and were grasping at straws so as not to lose their share of the pie.)

posted on January 23rd, 2008 at 12:54 pm

26 On January 23rd, 2008, Harriet

Food police is not the same thing as “scare tactics,” P-Doggies. Actually I don’t even know what “food police” is supposed to mean–random comments from others on what you’re eating? Or the loving but firm insistence on eating that is part of Phase 1 of Maudsley treatment? I don’t want to belabor the point, but I don’t consider that kind of support to be negative in the way “food police” has such negative connotations.

Rachel, you’re absolutely right about the research on FBT. Right now its best results are with adolescents, no question. I have my own theory about why it works better with adolescents–why all treatments work better for adolescents than for adults who’ve been sick for a long time. As Laura says, treating EDs early is like nipping a tumor in the bud. Treatment can be relatively simple when it’s a Stage I cancer. But by the time it’s Stage III it’s really a different disease altogether. The analogy holds true for eating disorders. By the time someone has been ill for 7 or 15 years, things are much more complex; behavior is much more ingrained and takes on a significant role in the sufferer’s life.

I think I’ve written elsewhere about my panic disorder, which came on when I was around 10 or 11. By the time I saw a therapist for it I was 21; I’d been ill with it for 10 or 11 years. Much of my identity was wrapped up in it in ways I’m guessing are similar to how EDs insinuate themselves into a sufferer’s life. I wondered who I would be without the panic disorder. I’d concocted many coping strategies that gave meaning to what I suffered with the illness. I didn’t want to give all that up, either. I didn’t want to be ordinary.

I don’t see that as a necessary component of panic disorder (and I don’t think any therapists would argue that it is). I see that as a function of the many years I spent being ill and not getting any help. Maybe the fact that I was a child and teen at the time is significant, too. Those years form your identity in ways we don’t understand.

The very sad reality is that there are no great treatments for EDs. One reason why gaining weight doesn’t cure anorexia outright is that nearly always, there’s not enough weight gained and the gain is not maintained for a long enough period of time–6 to 12 months. I would love someone to do a study that looked at relapse rates for AN patients with no pre-existing co-morbidities who reached a minimum BMI of 21 and maintained that for 12 months. I’m guessing relapse rates for that group would look very different than relapse rates for, say, patients who reached 90% of their ideal body weight (typically a weight at which people are released from residential or IP care) and did not steadily maintain it for a year. When your weight is too low the AN thoughts and behaviors don’t go away, and relapse is nearly inevitable.

I’m far afield here, but the bottom line is that I agree with Laura: the majority of ED patients cannot choose to eat or recover, and the family is in most cases the best and only support for them in the tremendously difficult process of recovery.

posted on January 23rd, 2008 at 9:14 pm

27 On January 25th, 2008, Jessica Setnick

I am so happy to see this topic being discussed. I agree that the research is in its infancy, not to mention the research bias that was mentioned (as in, you only find information about variables you were measuring).

I believe that there are many subgroups of eating disorders that are not identified by the DSM nor by our current model of mental illness, which introduces huge error into any studies of brain chemistry or brain function among patients.

Someday, individuals will be diagnosed based on brain chemistry dysfunction, or brain dysmorphology, instead of by symptomatology. Several people may exhibit self-induced vomiting, or self-starvation, but the underlying causes may be two or three or more subcategories. (I am not discounting that everyone has his or her own path to an eating disorder, but that the actual pre-existing genetic and/or physiological problems can be categorized.)

If we have a research sample of 100 patients with “bulimia” we may in fact have 20 with bulimia subtype-A (I am making up this terminology), 30 with bulimia subtype-B, and 50 with subtype-C. So our research findings will be based on a heterogeneous sample, but we will think they are based on a homogenous sample. There may be no statistically significant data at all, compared with if our sample was composed of all one subtype. I believe this is why we struggle to create standards of care (whether nutritionally, psychiatrically, or psychologically) for eating disorders.

Finally, with regards to the original post about family members, some nice research was published recently. It suggested that many individuals who upon entering treatment denied needing treatment, after three weeks of treatment agreed that they did need treatment after all. So perhaps part of the problem is that someone with an eating disorder prefers his or her eating disorder not just because it is a self-perpetuating cycle with accompanying malnutrition-induced mental deficits… but also because he or she doesn’t have any idea what life will be like without it. Or if they have tried life without it, they didn’t have the support to make it a life worth living without the ED.

Respectfully,

Jessica Setnick,MS,RD,CSSD
Author of The Eating Disorders Clinical Pocket Guide
http://www.understandingnutrition.com

posted on January 25th, 2008 at 8:06 pm

28 On January 27th, 2008, Meg Thornton

I’m depressive, and I suffered from disordered eating (particularly out-of-control comfort eating) for a long time. I still don’t have healthy eating habits much of the time. I just have medication which stops me from being a complete basket case, and cuts the necessity for me to self-medicate with carbohydrate on a daily basis. So here’s some tips I’ve discovered over the years of trying to monitor and moderate my own disordered eating.

1) Why is as important as how and what you’re eating or not eating. The first thing I had to figure out was why I wanted certain foods when I was miserable.
2) Start by forgiving yourself for being human. You’re allowed to make mistakes, you’re allowed to be imperfect. You’re also allowed to eat chocolate biscuits if you feel they’re going to help you.
3) It’s easier to listen to your own thoughts and figure out where you’re going off the rails if you have the minimum of external “noise” distracting you.
4) If you’re going to do it (comfort eating), do it right. Get the best quality food you can, and eat it in the most reassuring surroundings. Indulge yourself properly.
5) Guilt resolves nothing. It just makes you feel worse. Forgive yourself.

So, I suppose the way to look at this from the perspective of someone sharing your life would be as follows:

1) Behaviour has reasons. Help find out what those reasons are in a non-judgemental manner.
2) Forgive the ED person for being human. They’re allowed to be imperfect. They’re allowed to make mistakes.
3) Give the other person some private time, and let them find their own way out of the maze.
4) If they’re comfort eating, they need comfort. Sometimes a hug works a damn sight better at providing comfort than a cheesecake.
5) Yes, they know about calories. Yes, they know about the health risks. Yes, they know about the cost of the food. You don’t need to remind them - they’re already well and truly able to beat themselves up about all of this. See point two, and forgive them for being human and needing comfort.
6) Any move toward obtaining professional psychiatric help (no, not diet firms or gyms, actual psychiatric help) is to be strongly encouraged.

posted on January 27th, 2008 at 12:22 pm

29 On January 29th, 2008, hungry for hunger