April 11, 2012

What language means to you

I'm preparing a slide for my presentation at the upcoming AED conference in Austin. My job is to explain why the parent community finds biological explanations for eating disorders more helpful than other terms. I've heard hundreds of such comments over the years and want to share some of these quotes to an audience that is skeptical.

I want your quotes!

Why do YOU find biological language helpful, if you do? What "lightbulb" moments have you experienced about this? When was the first time you heard that EDs might have a biological basis?

Make them short, and tell me who I can say said them, e.g.

"When I realized our son's strange behavior was something wrong in his brain I stopped being angry and started giving him the support he needed to get well." B. R., Oregon

"The Minnesota Study changed everything for me. It was about the food, at least for a while." T.T., Brisbane


P.S. No, I'm not saying or asking you to say that experience, environment and parenting don't matter. Just what role biological, genetic, nutritional, brain circuitry, brain chemistry, brain anatomy, etc. play in your attitudes and your actions around your loved one's eating disorder or your own eating disorder or your clients' eating disorder.

28 comments:

  1. There was a huge shift inside of me when I learned about the biological nature of my daughters eating disorder. All things in retrospect began to make sense and the blaming of myself and the despair began to be replaced with compassion and logical next steps to help my daughter fight for her life.

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  2. We were not explained by professionals, the biological nature of anorexia for almost ten years and when I first learned about the biology (through Walter Kaye, Lock and LeGrange)and that my daughter's symptoms were directly related to the effects of a malnourished brain - it turned our lives around. What we found was that all her former clinicians set her weight too low and she suffered needlessly for that decade. Once I realized that I simply needed to feed her to a point where she was accurately and fully weight restored, it made all of her symptoms of distress understandable and lessen so that she would actually benefit from therapy. I no longer felt hopeless that she would ever recover, because I knew what had been missing. Understanding that this is a brain disorder helped my daughter not feel she was a treatment failure or not motivated to get better. She simply wasn't given the right help

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  3. after ten years of my own daughter's eating disorder and thirty years of family guilt about another relative's fatal illness, six words from an enlightened clinician made sense of all of it and took away decades of blame and bewilderment from the whole extended family. On being asked why she thought our lost loved one had behaved as she did Professor Treasure explained "it's the brain dear, the brain"

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  4. At first I blamed myself when I was told we needed family therapy to help understand why my daughter had "chosen" to stop eating. I could only interpret this as she was so unhappy with her life that she wanted to slowly starve to death. But then I saw other young people with the same illness--mostly, but not entirely, girls. I was floored by the similarity of symptoms, of parent stories, of reactions to treatment and of the general course back to recovery. I couldn't reconcile these startling similarities in any other way but with a neurobiological explanation.

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  5. It just didn't make sense to me that my bad cooking had led to my 9 year old daughter's anorexia (I was told this by a dietician!). In my gut, I knew it was biological, genetic. Once I found out that my daughter was predisposed to this illness due to her biology, my husband and I were empowered to help her get better, rather then think about all the things we had done to ruin our child!

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  6. It really helped me separate the thoughts and feelings from the behaviors and it helped me clearly frame what began to seem obvious to me, that people from all different age, gender, cultures and family structures suffered strikingly similar experiences, symptoms and behaviors. Effective treatment had to begin with the brain!

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    1. Yes, and my daughter was exhibiting the same symptoms and same food rituals as someone across the globe. That gave me peace in a sense that this was truly a disease of the brain and not simply a "desire" to be thin.

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  7. It really helped me separate the thoughts and feelings from the behaviors and it helped me clearly frame what began to seem obvious to me, that people from all different age, gender, cultures and family structures suffered strikingly similar experiences, symptoms and behaviors. Effective treatment had to begin with the brain!

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  8. Here is my contribution, Laura!

    Discovering that there is a strong genetic/biological component involved in manifesting an eating disorder cheered me considerably! I felt a load of hopelessness and guilt lifted off of my shoulders and I had renewed determination to seek out effective treatment for my long-term suffering young adult daughter. I was inspired to use all of my powers to get her to participate in that treatment.

    For my daughter (age 11 at diagnosis), realizing at age 21 that she has a biological predisposition to have an ED and a difference in brain circuitry, led her to stop feeling that she herself was responsible for her disordered thoughts and self-destructive behaviors. She has room in her head now for hope, and is working hard with an excellent therapist towards accomplishing remission.

    KrisB, Illinois

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  9. With a background in Autism and Speech/language pathology, after watching my daughter disappear, I knew this was a brain disorder complicated by malnourishment and behavior that could be modified/over-ridden/re-routed. I had a job to do and I knew it could be done. After all, I had accomplished this with stroke patients and children with Autism. Families need to be given hope and the skills to help.

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  10. When I first heard eating disorders have a biological basis I was beyond relieved as I always felt this as a mom. I thought, "Now we have a place to start doing some real research that can be useful and not another 'how do you hate your mother?'rabbit hole to waste time and money on.
    Becky Henry
    Founder, Hope Network, LLC

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  11. the biological terminology allows the concept and role of responsibility to have a chance to be put on the proper context : for the sufferer themselves, friends, family, professionals. This allows clarity in how to understand how the sufferer difficulties and how to support them in a way that results in healing from the core - rather than managing symptoms in a holding pattern forever. if the discussion was about my cancer this would happen naturally. If the discussion is about my eating disorder it does not. - LD

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  12. First time I heard that eating disorders had a biological basis was after finding the FEAST website. The FEAST website then led me to reading Dr. LeGrange's book. Understanding that this is a brain disorder FREED ME from GUILT. FREED ME FROM GUILT. That allowed me to treat my daughter as she should be treated. Like an individual that was suffering from an illness. Not like a spoiled child who was CHOOSING not to eat.
    Biological Language has FREED me so that I can help my daughter beat this disease. It has empowered me. Nutrition first. Nutrition Second. Nutrition Always.

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  13. Our experience on diagnosis was very powerful. Our d was admitted to hospital with a dangerously low heart rate and BP etc. while we knew somehting was wrong, her weight was not low enough for someone to diagnose anorexia nervosa so her diagnosis coincided with her hospital admission. the psychiatrist pulled us into a private room and said a few very powerful things, she has severe anorexia nervosa and it ia very dangerous condition, you didn't cause it or contribute to is, we dont really know from the research what causes it except there is a high genetic/heritability component and possibly a relationship to perfectionistic/OCD/anxiety tendencies - and the only way out is feeding. I feel so blessed this was our first interraction with a clinician re our ds AN as we wasted not a second worrying about what we could have done differently, how we had raised our d or whatever. We were able to focus solely on the task ahead of getting her better. Medicalising it also destigmatises it. the language of brain disorder/barin circuity problems etc also make it much simpler to explain ds condition to others, make them feel moire confortable in interracting with her and enlist their support.

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  14. When she was diagnosed with AN, my husband and I thought it was because our older daughter was such a bully in the house. When our FBT told us that it was not our fault or our daughter's fault, it was such a relief. And the FBT said it wasn't our older daughter's fault either. She explained that our d was predisposed to AN because, " Genitics loaded the gun, environment pulled the trigger." On Easter, our daughter was upset and said, " I knew I had anorexia, why didn't you know? How could you have almost let me die?" and there is the question? Our daughter almost died under the nose her mother, the nurse, and her father, the pediatrician.
    Maria, Arkansas

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  15. Having learned early on in my daughter's illness, trawling through the internet looking for help and understanding how to treat my daughter, I fortunately came across the work of Dr. Kaye, Dr. Bulik, Dr. Lock, Dr. LeGrange and others. Learning my daughter's illness is biologically based and her brain had been compromised due to a lack of nutrition and starvation, I embarked on a full scale effort of re-feeding. In time, little by little, my beautiful daughter's weight returned to normal and through that process the psychological symptoms began to subside. I felt great relief to know that her father and I were not the cause of her anorexia; it empowered me to fight this head on and with calm determination she is now in recovery in less than a year after diagnoses.

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  16. Laura: This post may complicate your argument - sorry. My daughter developed RAN at age 18 after years of struggling with atypical depression. After reading Harriet Brown's book I had no doubt that her behaviors (food rituals, fears, etc.) were the result of her physiologic state of starvation - not choice. This helped me to separate her from the eating disorder and enabled me to commit to the task of refeeding with compassion, not anger toward her. In my mind, the evidence of the biological basis of eating disorders is reinforced by the paradox that some sufferers experience. Restricting absolutely makes my daughter weak, irritable, irrational, but minimizes the don't-want-to-get-out-of-bed depression that is her background noise every moment of every day. This is a bright, talented girl with biological pre-sets that drive her but sometimes derail her. Assigning biological cause frees her to use her capabilities to work against the disease and not feel like she is fighting herself.

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  17. Laura: I hope this comment does not complicate your argument. My daughter developed RAN at age 18 after years of suffering atypical depression. After reading Harriet Brown's book I could recognize that my daughter's behaviors, such as food rituals and fears, and body checks have their basis in the physiologic state of starvation. This really helped me to commit to refeeding with compassion, not anger toward her. But for me, the compelling argument for the biological model comes from witnessing the paradox that my daughter and others endure. Although restricting makes her weak, stupid, irritable and irrational, it also minimizes the don't-want-to-get-out-of-bed depression that is her background noise every moment of every day. This is a bright, talented, witty young adult, with biological pre-sets that make her amazingly capable and can also derail her. For her, accepting the disease model is not stigmatizing. On the contrary, it empowers her to honestly use her talents to battle the disease without feeling like she is fighting herself.

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  18. Laura,

    The main reason I found learning about the biological processes behind anorexia empowering is because before that my own behaviour was incomprehensible to me. I was intelligent and thought I had a lot of insight into what made me tick from years in and out of therapy, but I still persisted in restricting and losing weight. Learning about the biology of eating disorders helped me see that I was suffering from an illness which I needed to fight. It helped me separate my own beliefs, thoughts and values from the eating disorder.

    Shorter version? Traditional therapy treated me like a wilful, stupid child. Learning about biology made me feel empowered and became the foundation of my recovery.

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  19. I am good at science and even better at parenting. I like "biological brain disorder" because it's TRUE.

    I knew my daughter didn't suffer a trauma and that our family was not to blame. She has a food sensitivity issue; when she is malnourished, a cascade of changes take place in her brain and in her behavior. All the psychosocial stuff is malarkey in her case. It's biology. It's neurology.

    Knowing that it is a treatable brain disorder helped me to deal with my daughter's bizarre behavior and empowered me to help her recover. It really motivated me to feed her and get her well.

    I was a good parent before my daughter got sick; now I know I am an extraordinary parent!

    Unfortunately, I don't know if the ICED people will be able to handle a mother with self esteem!!

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  20. A brain disorder just fits so well with everything we experienced of our daughter’s illness and, more importantly, everything we experienced of her recovery.

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  21. What better way to engage a parent’s nurturing instinct and build hope, strength and purpose than to help them understand their child is an innocent; not a recalcitrant.

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  22. One argument I've been reading against the biologically based view point is that some feel it makes the ill person feel less "fixable"--as though because if its genetic, they can't change it and will always be ill, or have the tendency to be ill. Whereas, with the "it's the environment" view point, it gives a person more hope that they can change and get better (more personal control). I'd like peoples' thoughts on this. For us, when my daughter was very ill, feeling responsible for getting better seemed overwhelming to her. She didn't have the physical or mental reserves to take that on. Letting us do it for her until she could made sense to me.

    The flip side of all this (for families) is the hopelessness and shame felt when the environment is said to be the cause. It is especially baffling when there is really nothing apparent that should cause such a difficult illness. It personally took away much of my sense of hope and control as a parent.

    I just want a theory that supports the mental wellbeing of each and every family member. That is good medicine. When a loved family member is ill, it does no good to have a theory that diminishes others--and whether that is meant or not, in reality it often seems to be the end result.

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    1. Anonymous

      If your child was diabetic, would the same argument still hold?

      The whole discussion is not whether this is a genetic OR environmental disorder. No one would deny that environment plays a part. This discussion is about whether finding out that this disorder has a biological basis helped in understanding the disorder and how it helped.

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    2. My other (non-AN) daughter also has a biological issue that she can't ever "fix"--she is deathly allergic to dairy. She has zero tolerance, has to carry Benadryl and an Epi-Pen, etc. She is not, however, ill. She is fine. She reads labels at grocery stores, asks at restaurants, even goes back into the kitchens and talks with the chefs. She pops a Benadryl at the hint of a reaction. She's not constantly fighting symptoms. She's just taking care of herself and life is fine.

      My other daughter has a brain disorder. As long as she eats three meals and several snacks every day and maintains her weight above a certain number, she is fine. She doesn't struggle with symptoms or invasive thoughts. If she misses a meal, however, she reacts with further restriction. She has to be sure that she is maintaining her weight and nutrition at all times. When she does, she is fine and her life is happy and interesting. She's taking care of herself and life is fine.

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  23. Laura, you know I always struggle with short - ;) - but here's my best shot:

    Understanding that we were not alone in what we were seeing and hearing, that the brain - more complex than I can imagine - can be reduced by illness to creating common symptomatic behaviours and feelings enabled me to get on with supporting recovery and not recrimination with a degree of calm, consistency and tenacity that I am not sure I would otherwise have managed.

    Erica, mother of a recovered 20 year old daughter, SE England

    Happy for you to give as much or as little detail on me as you have and you like Laura and happy for you to edit me!

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  24. "It's not about the food" was helpful; that in my daughter's case, it was about suppressing painful emotions. When she was in treatment she finally confronted those demons and it was so very painful for her to go through and for her parents to witness. Now she has tools to get her through rough times. She's in her fourth year of recovery and never wants to go back to her ED!

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  25. This may not be exactly what you're looking for, but I brought my daughter home from college with an ED last year. We didn't know much about the disease at that point. She went to an appointment with a physician who was very knowledgeable about ED, who explained ED's as a brain based disorder. She summarized the Minnesota study and talked about food and nutritional restoration as the beginning. This greatly destigmatized the disease in my daughter's mind. She had no idea what was happening to her, and the explanation was the very beginning of her recovery.

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