One word: Minnesota

Last night, Christmas Eve, I took a tearful call on the F.E.A.S.T. phone line. The details are familiar: another brave mom still searching the Internet and making calls in search of hope despite a series of hospitalizations and repeated and frightening episodes with an eating disordered loved one.

Sometimes the calls are from parents who have just discovered the illness. These calls are a relief for me and the parent: I know where to point them. Good science, good clinicians, an empowered and well-informed family and EARLY INTERVENTION is the quickest path from terror to effective action.

What frightens ME is how many of these calls are from parents who are not new to the topic of eating disorders but are new to the things I'm telling them. In the past month I've talked with three mothers of patients who have seen a series of eating disorder experts and NEVER HEARD OF THE MINNESOTA STARVATION STUDY. Not ever heard "brain disorder" or "genetics" or "Maudsley." Never been told that the family CAN do anything except drive their suffering child to a doctor's appointment. Despite asking and going to appointments and going to ED sites and reading books these parents have not been provided with a choice to respond in a different way. These parents did not know that a semi-starved brain is being damaged and that damage causes mental symptoms like distorted body image, social disconnection, fixation on food, OCD behaviors, or that for those with an anxious temperament even a low level of malnutrition is a self-medication that becomes nearly impossible to forgo.

I'm angry, angry, angry that these parents are not given the information or the choice to respond in a different way. I'm furious that parents who would have acted early and assertively are robbed of that opportunity because people who are ignorant of newer information - or reject it - don't give these families what they deserve: the knowledge that eating disorders are a TREATABLE ILLNESS and that parents and families have enormous power and unique abilities.

My anger and frustration are continually washed away, however, by two things. One is the bravery of these parents who keep searching and once they hear of better information are willing to do what needs to be done. The other is the growing community of parent activists and clinicians and patients who are changing the face of this illness through talking and writing and blogging and mentoring and treating and volunteering and donating and innovating and holding support groups and bringing information to doctors and schools and bringing this illness into the modern era where it belongs. Lives are being needlessly ruined and lost due to ignorance - not just the illness. To my fellow activists and to the brave lady from last night who said that the information she just got from F.E.A.S.T. is the best Christmas gift she could imagine - my gratitude and my best wishes.

Comments

  1. I know your focus is on parents, but it makes me angry that patients aren't given this information either. We are led to believe that eating disorders are choices, and that if we do not recover it is because we are selfish, dysfunctional or hopeless. I managed to find my way out of my illness, but so many others continue to suffer because there is not enough information or support. I'm really glad that mother found your helpline's number :)

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  2. What a gift you do give these parents and families! I treated ED as a doctor ( last in clinical practice 5 years ago) and had never heard of Maudsley or the Minnesota Study... (And I was a dedicated, caring, relatively newly trained physician from a top ten medical school. It's not that we don't mean well...) It is so awful that this crucial information is not out there! I feel the same way about real information on feeding and childhood obesity. While the implications are far less acute and life-threatening, I am so disheartened that the medical approach to childhood feeding struggles and weight in general is so backwards and frankly harmful. Good luck and health to the mothers and families you help!

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  3. I, too, am angry that info about Maudsley, evidence-based treatments, and the power of the united front of parents and mental health care professionals are not being given to parents of ED sufferers immediately. I think that all of us who were not given this info by the "experts" we hired should contact those experts and tell them what did work to help our children heal. We should tell them how much agony would have been prevented by earlier knowledge.

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  4. Dear Laura,

    I am one of those frustrated moms that has been searching the internet, emailing you, emailing other doctors across the country and talking to psychologists, psychiatrists, pediatricians, and therapists.

    I live in Atlanta, Georgia. Atlanta is a large, forward-thinking city. But trying to find help here for an eating disordered child seems nearly impossible. My daughter was inpatient at one of the "top" clinics in the area and she LOST weight, along with coming home with new ED problems.

    Thanks to you and the team at F.E.A.S.T. and the Maudsley Parents site, I am calling, searching, learning and asking questions of everyone we meet with. Since our current psychiatrist hasn't even heard of the book "Help Your Teenager Beat An Eating Disorder" (and had no interest in borrowing the copy I took to therapy with me) I am looking for another psychiatrist. Since my daughter was literally underfed and trained in the sneaky ways of ED at her most recent facility, I will be looking outside the state if we need further inpatient treatment.

    I am a widow. I am the only adult in my home. With the help of your website and those you recommend, I am trying my best to beat this monster called Anorexia Nervosa. I have been refeeding my daughter since May of this year. She will get up to a good weight, then something happens (such as inpatient treatment this time, then a stomach virus) and she drops down in weight. Once "Anna" sees that she has lost weight, "Anna" wants to stay that way. It is a constant battle.

    Thank you for all that you do for us. Thank you for helping us. Thank you for your constant search for new information and thank you for passing that along to those of us in the trenches.

    I hope you have had a wonderful Christmas. "Anna" has tried her best to make our entire holiday season miserable, but we have had some good hours. I truly appreciate your speedy response to my last email and I thank you so much for your dedication in helping heal those with this terrible disease.

    Gena

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  5. Thank you,Laura.

    FEAST has been a gift for all of us, a lifeline of support, hope and empowering, practical, lifesaving information.

    It has taken a tremendous amount of work to get FEAST off the ground and to this point. Its an incredible gift, one I was not given by anyone else in the ED world in the same way. I know many people have been involved, but I appreciate the VISION you and your family had.

    Thanks a thousand times. And Merry Christmas.

    My daughter is home, she asked for presents this year, she gave presents, she even brought frozen meat (!!!) with her from a local farm (free range of course, but this is my vegetarian). She ate it. She asked for new clothes. My husband cried and said it was THE BEST Christmas ever.

    Amen.

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