She's Anorexic, and You're a Bad Mother

I was told in 2002 to stop feeding my child. She was anorexic and her young body was failing, but I was told it wasn't my business and it wasn't about food.

They were wrong. They're still wrong. And they're still saying it.

But why should the public care? If you don't have a loved one with an eating disorder you may think you know all you need to know about things like anorexia and bulimia and it isn't your problem. But you need to know this: you are next.

The need for evidence-based treatment of all mental illnesses is urgent and the cost of business as usual can be counted in lives and money and the silent hell of people you know. There are effective treatments for depression and anxiety, bipolar disorder, schizophrenia and eating disorders and there are parents fighting to get these treatments for their loved ones in vain. We are all paying the price.

Eating disorders are brain disorders. This isn't opinion, it is fact. The head of the NIMH, Dr. Thomas Insel, says so, as do the leading experts. Eating disorders are biologically based and genetically transmitted. They are treatable, and yes, food plays a major role in recovery. But a parent seeking help for a loved one lost in anorexia or bulimia or a related illness isn't usually told these things. Parents are told to back off, read a book on "letting go," and prescribed an anti-depressant for their obvious distress. We are asked for insurance information, our own dieting history, and why we think our child has chosen to do this. But why? Modern researchers and research-based clinics now say that the food is medicine and parents need to deliver it. The Family-Based Maudsley approach shows the best results and the APA and our government health authorities acknowledge this.

So why was I told to back off? The same reason the parents of autistic and schizophrenic children were once blamed for those illnesses: wrongly, unfairly and at great cost. No one talks about Refrigerator Mothers or Schizophrenogenic Mothers any more but we're still doing routine "Parent-ectomies" on eating disorder patients. We see patients as victims and look for abusers. Parents accept the blame because guilt is what we do.

But I'm not doing guilt any more. I'm not doing shame or blame about this illness. Not blaming my child, not blaming the media, not blaming myself or her father or my own mother. My genes, well, that hand of cards had anorexia in it but also my daughter's curly hair and work ethic and artistic drive. I love this kid for her whole self, and admire the fact that she fought her anorexia and won when her brain was healed enough to take that on herself. And she did, she's fully recovered. Who does she blame for the illness that once threatened her life and estranged her from the world? Her genes. Who does she credit for her recovery? Herself, family, food, a good treatment team, and evidence-based treatment.

And that's why I wrote a book, why I blog, why I started a nonprofit for parents of eating disorder patients: because parents are still being told they have to step back when they need to step forward. Because parents aren't told about evidence-based treatment. We need a worldwide movement to tell parents and caregivers they don't need to slink off in a corner and write penitent checks to people who aren't keeping up with their field.

A few years ago I had a chance to interview Dr. Insel at NIMH on camera for a video I produced, called "Do Parents Cause Eating Disorders." I asked why eating disorders don't get the research and funding one would expect for an illness affecting at least 3% of the population. His answer was "parents." He's right: look at any powerful movement in healthcare and it is the patients and their parents who rose up and got it done. With child health, and mental health, it is parents who carry the pitchforks and the placards. I'm making it my business to foment revolutionary fervor in parents, not just of eating disorder patients but for all mental illnesses.

Revolutions used to start around the hearth, but I'll settle for the warming fires of the blogosphere.

Revolutionaries wanted: apply within.

Comments

[TheBlackCat]

To all the parents out there, I just have to say: Never give up.

I was anorexic/bulimic for over ten years. Though I had brief periods of recovery, I always relapsed. I had given up any and all hope of every being normal. I thought recovery did not exist, at least not for severe cases like me. Though I went through the motions of life, inwardly I believed there was no hope for me, and that by 25 I'd be dead or permanently institutionalized. Absolutely every facet of my life revolved around my obsession.

But now it's 4 years since my last relapse. I'm a married, happy, healthy, productive member of society and I even weaned myself off of Zoloft last year with no recurrance of the obsessive thoughts I had before I went on it.

I wish I could tell you all what the magic cure for anorexia is, but every sufferer is different. I do believe parents being ACTIVE in their child's recovery is hugely important, as this article states...though I do know those who have recovered without it, and know others who have had this help and still not recovered.

The only thing I can tell you is to ALWAYS HAVE HOPE no matter how bad it gets and no matter how many times your child has relapsed and how many treatments have failed. No matter how heartbreaking and how frustrating it gets, know that recovery IS possible.

[TheBlackCat]

But one word of warning:

Don't trust your kid.

Us anorexics become EXCELLENT liars. And then we go into therapy and we meet other anorexics and we teach eachother tricks and conspire to become even BETTER liars. It doesn't matter how good a relationship you have with your child- I've yet to meet a fellow ED sufferer who didn't know a million and one tricks to fool their parents and doctors. We learn how to hide food and how to vomit quickly and silently and without getting caught. We learn how to fake happiness and healthiness and how to pass for "normal." We act like we're involved in the recovery process when in fact we're trying to subvert it.

The best way to think of eating disorders is as an abusive boyfriend. Is your child afraid of their ED, do they HATE their ED, are their lives being ruined by it? Yes, but at the same time, they LOVE their ED. They see it as their only means of salvation, to be protected at any cost. And they will do whatever it takes in order to maintain that abusive relationship.

[SusanX]

BlackCat,

Thank you for sharing your story and your message of hope. I would modify your warning a bit to "Don't trust your kid's ED!" Thinking that your child is lying can make it much more difficult to love your child, while fighting the ED. You are so right that ED will go to great lengths to survive in your child, taking your child to extremes in behavior that parents never believed possible. This is my version of your important message:
NEVER LOSE HOPE. LOVE YOUR CHILD. SUPPORT HER/HIM AGAINST THE ED.

[sparky66]

Part 2 of my comments on Mirasol.

On the same site under the Causes of Eating Disorders: "there is rarely a single explanation for an eating disorder." directly folllowing­.......may be caused by a number of factors which include family and cultural pressures". It goes on to list other factors but not one mention of GENETICS or brain abnormalities. Maybe it's there and I missed it. Of course, this is old school and the book that is referenced is from 1990.

I encourage treatment centers such as Mirasol, to wake up, and read current research which has taken place since 1990. The new findings include genetics and brain abnormalities as a cause and Maudsley Approach as being evidence based. Families are included in recovery. We use our hands to feed, our arms to hug, our ears to listen, our mouths to encourage, and our brains to decipher old school vs. current, evidence based treatment.

[sparky66]

Examples of parentectomy from an ED website www.mirasol.net

From Positive Strategies for Parents section, I was saddened to find the followng:

One of the rules is "Accept the person's right to an individual life. Don't take charge". Another rule:"Each household member decides indvidually what and how much he or she will or will not eat".

Would these "rules" apply to the parent of a diabetic? Diabetes, anorexia, and bulimia can all kill? Why do we say it's ok to monitor food intake and give insulin to our diabetic children, but when it comes to giving the anorexic child food and see that they take the right amount, at the right frequency during the day, and types of food to live, then it becomes interference with the child's rights? That it's best to leave that to the professionals, so pack their bags and send them on their way.

Why are parents of diabetic children expected to monitor and restrict their child's diet and give life-saving insulin when needed, but parents of children with eating disorders are told to "back off" and "shut up" that the child decides when and what to eat and to not administer life-saving food in the right amounts? And that the only qualified people to do so are at these treatment facilities?

[Jenni Schaefer - Huffpost Blogger]

Laura,

I am so glad we are blogging sisters now! Great post. Thanks for all that you do to get the truth out about eating disorders. You are a gift!

Jenni

[carmom]

Laura,
Thank you for the wonderful article and your courage and dedication to getting out the word about the Maudsley Method. We need to keep spreading the facts about eating disorders so people don't have to spend years suffering under outdated theories and treatment methods. My daughter was first diagnosed in 2001 with anorexia. She was technically an adult, so we were told to back off and let her decide when she was ready to choose health. This was all while they pushed and pushed my daughter to figure out what her parents had done to precipitate her illness. Blame was the game. And I was ready to accept any blame, if only it could bring wellness to my daughter.

We went years and years with my daughter struggling and going through numerous hospitalizations and residential treatments at an enormous expense. It was only after getting connected with a new, wonderful therapist who recommended the Maudsley Method, that things started to turn around. It has been 2 years that my daughter has been in a stable recovery now. There are still challenges, but it has given her a new lease on life and hope for the future.

Keep up the good work. I know you have a lot of families behind you.

[TheBlackCat]

I was anorexic and bulimic for over ten years, and I spent so much of my life in rehab centers, both on an out and inpatient basis, to various therapists, and to various support groups.

And though I'm not saying I didn't get ANYTHING positive out of these experiences, I think that traditional eating disorder therapy is very misdirected.

Every place I went for therapy, it was always the same thing: "All right, people. Now lets all sit here and talk about how our parents ruined our lives." We were always told that our parents were responsible for everything that was wrong with us.

It makes sense. I mean, a lot of times, parents ARE the problem when it comes to psychological problems with kids. But that should NEVER just be assumed and pressed upon the child as fact. Sure my parents made mistakes, and I don't think they HELPED my situation, but they certainly didn't CAUSE it, either.

I finally went on a high dose of Zoloft as a last resort on my millionth hospitalization after over a decade with this disease. Within a year I was symptom free, despite stopping therapy prematurely against my therapists' advice. The anorexia "voice" in my head simply shut up after I went on Zoloft. I firmly believe my ED was a chemical imbalance that was fixed through medication. All ten years of therapy did was damage my relationship with my parents and make me resent them, instead of helping me.

[TheBlackCat]

Just to clarify, I'm not saying chemical imbalances are the only reasons for anorexia and that drugs are a sure fire cure. Every person is different. I've made a lot of friends throughout therapy and though I know a few like me: people who had amazing results due to psychiatric drugs, there are plenty of others who did not. Psychiatric drugs have serious side effects, should not be taken lightly, and aren't a magic cure all for any disease. In my case, my only regret is that I didn't start taking Zoloft ten years earlier (I had been very very anti drugs, I resisted being put on them for years, but finally relented when nothing else worked).

The point of my post is supposed to be that "blaming the parents" is a horrible blanket strategy to be forcibly pushed upon the patients...not that Zoloft SHOULD be a blanket strategy.

[sparky66]

Hi BlackCat,

Thanks for sharing your experience with what you were told in therapy. The goal of recovery is to help bring the families together, not put blame on them and push them apart. I hope you are able to have a relationship with your parents now.

My daughter did try Zoloft early on in recovery, but it didn't work. She is using Amino Acid Supplements that help to make neurotransmitters, mainly seretonin and that seems to be helping her. I am glad Zoloft worked for you and that you were willing to finally try it.

Best to you.

[lovemykids46]

Laura, thank you, for speaking for all the parents struggling to help their children with eating disorders. I too join the "food police" in saying our daughter would not be here today if we hadn't supported her and helped her eat at home - hour after hour, day after day, month after month of encouraging, cajoling, supporting her to eat. We still have a long way to go but we have come so far. I hear horror stories from other parents. They've mortgaged their homes to send their ill children halfway across the country for treatment, only to have them come home to starve themselves again. Why have the parents not been given information about Maudsley by treatment programs? Why have they not been supported in helping their children at home? Thank you for all you've done Laura!

[avicenna]

I can offer a perspective from clinical endocrinology and the role of stress and hormones in regulating the altered hypothalamic axis in anorexics. It seems to many that the issue is food - after all, if the anorexic just ate, then all would be well again. It isn't as straight forward. We've learned many with this eating disorder have an altered stress response - even after weight recovery. After refeeding, anorexics increase trunkal fat (over peripheral - which is healthier) and have an usually high level of cortisol (a measure of stress). This is where the genetic susceptibilty comes in - just like in diabetes or alcoholism - given the right situation (the tipping point) - these individuals have adapted a maladaptive coping stategy to stress - often precipitated by some kind of trauma. To some anorexics, the loss of control of food intake is extremely fearful; they think it's all they do control (which is obviously a fallacy since their starvation contols them). But the neural reward stimulation is addictive and soothing, which is hard for many to understand. Long-term recovery would involve going back to the source of initial trauma (an extraordinarily high number of people with eating disorders experienced some kind of abuse - especially sexual abuse) and then helping them face their fear with the help of anti-anxiety therapy. When weight stabilization has occurred, the "survival" instinct often has a stronger foothold over reason and the extreme aversion to food and weight are less strong.

[Laura Collins Lyster-Mensh - Huffpost Blogger]

Avicenna,

Your description of the very important stress interaction is very valuable. I'd like to ask you to look again at the abuse connection. Although this was assumed for a long time, the data indicates there is no relationship between anorexia and abuse, sexual or otherwise.

Stress and anxiety can be from the outside, or the inside: most people with eating disorders have co-morbid anxiety disorders - something they are born with. No stressful event need occur.

This misunderstanding, I'm afraid, has led to countless witch hunts in families and unproductive soul-searching by patients. Anti-anxiety techniques and therapy are certainly an important part of eating disorder treatment. The first task, however, is restoring brain function so that therapy can take hold.

If abuse or trauma has occurred, and of course this happens in the population at large, the patient will need specific support and assistance on that score as well.

[standupforparents]

Stated in a post by owner of eating disorder clinic :
"I have mixed feelings about the Maudsley method. On one hand it's wonderful for parents to take an active part in the child's recovery process. On the other hand, I don't like the idea of the parents having to be the food police. In an ideal world, the child will learn to regulate herself, perhaps with her family's help, develop self-esteem, and age-appropriate independence so she ends up being responsible fo rher own health. "
I have been dealing with my daughter's eating disorder for just over a year. If I had not heard of the Maudsley method, first lightly suggested as a reading material, and then through the F.E.A.S.T. site founded by Laura Collins, I would still be lost and my daughter underweight. It is not about just being active in the child's recovery process, it is about recovery day to day in the home. I am an medical professional and I was intially not given the opportunity to take the bull by the horrns and help my daughter's recovery. I see great hope that she will not suffer into adulthood and it is because of what is happening in the home. With a good professional team, I am guided. No amount of office visits will replace what I am doing day by day. This is what parents need to know and be supported by others around them.

[they2]

I played the role of "food police", which I assume was meant to be regarded as a negative thing.
Police serve and protect and that is what I did for my daughter. She was unable to eat due
to the extreme anxiety of anorexia. I served her food and ensured she ate it all and I protected her from the disease which wouldn't allow her to eat.
Gradually I no longer needed to play that role as she recovered using the Maudsley treatment model and she now serves herself.
I am so tired of the old cliques and misinformation out there and even here.
Our family is so normal, no dysfunction, no abuse, no obsession with dieting, etc.
This disease began when my daughter decided to eat more healthily as taught in her grade 9 gym class and lost some weight and couldn't stop.
She is a tomboy and did not understand she had anorexia until we had her assessed.
Thank you for this article, hopefully people will begin to embrace the newest research and let go of the old, harmful nonsense.

[feminista1]

I'm a bit surprised by the significant attention given to biological and genetic factors in the discussion of eating disorders here. The problem here is framed as EITHER one of biology or parenting, rather than the reality of how eating disorders emerge, which is a complex interplay of biological, familial, and (especially) SOCIAL influences. 90% of those affected by anorexia and bulimia are women, and these problems emerge almost exclusively in the Western, developed world. The fact that a girl/young woman in this culture struggles with demands to be 'perfect' in all areas of life, or with conflicting messages about consumption/denial is rarely (or rarely primarily) her parents fault...it's the air we all breathe. When she turns to food to manage these anxieties, again, it's not the result of bad parenting...but the intense focus here on genetic and biological explanations as an alternative to the familial (as if these were the two only influences) means that we accept the status quo for our daughters and young women...and if that's the case, then nothing will change for them.

[Laura Collins Lyster-Mensh - Huffpost Blogger]

Feminista,

I agree with you that this is not an either/or issue. Eating disorders are 50-80% heritable, however, more than any other psychiatric illness. The environment part of the equation is still unknown, but it seems to include pre-natal circumstances and to a great degree nutrition. Dieting is the one common factor. The social influences are simply not known, and may indeed be mediated by dieting and the moral value with which it is imbued.

We've also learned, in recent years, that eating disorders are less discriminatory than we thought. Men get eating disorders far more than we thought, and they seem to strike all around the world and all cultural groups. The perfectionist aspect may be a symptom of the overall genetic predisposition associated with these conditions.

It is an exciting time in eating disorder research and recovery - much to learn, and much to disseminate from what we have learned. I keep an open mind, but there are some older ideas we do need to retire, because treatment is led by our assumptions about cause.

[inmyhumbleopinion]

It stands to reason that environmental issues do have a major influence. One would only have to look at sub-cultures like ballet and gymnastics in which anorexia and bulimia are rampant because a set body type is required for serious participants. Is it that the typical anorexic with their hereditary tendencies are drawn to these endeavors, or does the endeavor itself trigger those hereditary traits? I'm sure there is some combination of nature/nurture going on here--the question is, what triggers this in some girls/women and not in others?

I didn't see any mention of drug treatments for this disorder. If, as you surmise, this is a brain chemistry issue, wouldn't medication help alleviate the anxiety symptoms that trigger the behavior?

[HaveYouEaten]

Wonderful! Love, Family and Food is the best medicine for an eating disorder.
Since when did taking care of loved ones by making sure they receive adequate nutrition become wrong? To do otherwise amounts to negligence.
If I am to be slurred with the "Food Police" tittle, sign me up and give me a badge. I will wear it with pride as I feed my anorexic daughter back to health.
I urge anyone who cares to look at this bill, consider emailing your representative and encouraging them to vote YES.
http://www.govtrack.us/congress/bill.xpd?bill=h111-1193

[PoliceChief]

Laura, another thank you for the wonderful article as well as all the good work you do. It is this "new thinking" and all of the credible research regarding the biological basis of eating disorders , etc.that has helped to save my daughter's life during the past year. I have done it both ways...and sat and watched as my daughter was encouraged to "choose" the right way as her brain and body continued to suffer the effects of malnutrition. It is quite simple. A malnourished brain can not be expected to reason or choose. Since taking charge and focusing on nutrition first, my daughter has come a very long way, and surely would not be alive if we had continued on the path we were on. Many cannot understand this because it is difficult to see how the lack of eating and other ED behaviors can make a sufferer feel better and reduce anxiety. So we must continue to spread the word about this horrrible yet treatable illness. We have not quite completed the recovery process, yet my daughter at age 17 has told me and others that even though she deserately wanted to get better, there is "no way" she could have done it on her own. So call me the Chief of the food police and that will make me PROUD as I continue to fight with love and determination so that my daughter will have her life back and be free from this illness forever.

[annesl]

Part 2 continuation

-the estrangement that we've felt ...I think because she felt we were somehow to blame...or she was to blame...because this illness was a 'choice' (the very words of the Clinical Director to my daughter the day she was admitted). Do you know how AWFUL that makes one feel as a parent? or a sufferer? Where is the Hippocratic Oath of do no harm? There are assumptions going on the minute you walk in the door with a young person with an Eating Disorder.

I believe in the Maudsley Approach because I have seen it work. I believe in families being part of the team to wellness for their child. I believe in inclusion, not exclusion.

I believe in the power of the family to help heal its members. This needs to be supported and THIS should be the role of the therapist. The Maudsley Approach does that beautifully. To the therapists that are not practicing Maudsley, there is a revolution coming. And its coming from families. We won't settle for less anymore.

[annesl]

Part 1.
My daughter was ill with anorexia around the same time Laura's was. No one breathed a word about Maudsley to us nor did I find information online at the time.

I KNOW I was a good, loving parent. This was an adolescent that was never abused, verbally or physically. This was a young lady that slipped into anxiety, then depression, during her early teens. All during her 'treatment' for 'why' she 'chose' to stop eating, I felt something was just 'not right'. She had such an intense phobia over food that you would have to see it to believe it. Being told that it was 'not about the food' was like ignoring the elephant in the room. It made no sense whatsoever.

• its not about the food, when food was at the very heart of the issue
• separating us from her when she was at her most ill, a time when she MOST needed her family emotionally (would they do this to a child with cancer? You bet not.)
• allowing her to choose and plan her own meals (something she'd never done prior to her illness, except perhaps for a snack or breakfast). This only led to greater anxiety with calories and food.
• having therapists and doctors 'take over' our parenting role (in a very real sense)...we became secondary in her life

[MaudsleyMom]

Thank you, Laura for your post.

I take issue with the view that parents may not be equipped to feed their children at home and that we are the food police.

We are a Mausdley success story. Our 9 yo d fell ill with Restrictive Anorexia at 9. She started by restricting food groups until she was eating about 500 calories per day. We did Mausdley at home with the support of an FBT who believed that as parents we had the tools needed to feed her. We also had the support of the Around The Dinner Table forum. It took us about a year to get our dd in remission. Today, she is a healthy 12 yo and the Anorexia is not part of her life any more.

The advantages of doing Maudsley at home. We knew our dd best and loved her more than anybody in the world. We set up tight boundaries and clear parameters so she knew that nothing mattered except her nutrition and safety. THE REAL FOOD POLICE was the anorexia and we gave our d the freedom to eat in spite of the ED. We are not in debt nor had to use our life time savings to put our dd in inpatient treatment. We will continue monitoring her until she leaves our home and supporting her for the rest of her life. Our relationship with our d is stronger than ever.