Anorexia does not cause starvation; we do.

You know what? I'm tired of hearing anorexia described by what it does to the body: emaciation, slow heart rate, muscle wasting, bone loss, low temperature.

Actually, anorexia does none of that. Malnutrition does that.

Malnutrition is curable. The physical manifestations of anorexia, and the ravages of bulimia can be stopped and reversed immediately if the environment around the sufferer changes, even if the patient isn't ready. And with physical health, mental health also improves.

The mental symptoms of malnutrition abate with full nutrition over a long period of time even if the patient does it involuntarily.

It isn't the illness that is the problem. We are the problem, and we should know better.

We ask, beg, and demand that eating disordered patients stop what is an involuntary compulsion. We watch eating disordered people continue the behaviors of the illness even when we know their prognosis worsens every day they are not fully fed. Asking for insight and cognitive change of a person who is underfed - even a little underfed - is like demanding a commitment to quit heroin while the person is still high. It is like asking a drowning person to learn to swim while they are still in the water: it is futile and cruel.

None of the physical symptoms of eating disorders are inevitable or necessary. What must change is us: our attitudes, our boundaries, our treatment professionals, our laws, our media, and our insurance policies. The disease isn't going to change, but we can.

Comments

  1. Those of us genetically wired to 'get it' have already gotten it.
    Thing is when a mother or father are wired to retreat when faced with a problem they first need to figure how to face their own fears.
    It's frustrating to tell someone they CAN do something that they don't think they can. [speaking of parents here] Assuring parents that they have instincts and can follow them is sometimes like assuring someone with an ED that we know the way so please follow us. Sometimes it means helping the parent find their instincts because they've been conditioned to forget what they think for so long that they no longer trust themselves.
    We are all different but this is one area where true growth can come for both parties, us and our children, if we are able to appreciate our own ability to be responsible and help when we can.
    There are many parents who parent in such a way where any little whimper causes them to shudder and buy another toy, anything to stop the annoying noise. In the end this teaches them to get noisier.

    Anyway, it's hard work to change, for all of us!
    ((((((((((hug))))))))))) to you laura for all the strength you give to others. : )

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  2. You rock, Laura. This is exactly right. Current anorexia treatment is CRUEL. One of the images I'll never forget is my daughter lifting a fork toward her mouth, her hand shaking, getting it almost there, dropping it, putting her face in her hands, and her anguished cries of "I can't do it, Mommy!" It was not until we took away that terrible choice, until we became the external compulsion, that she was able to begin the slow road to recovery, bite by bite.

    All of us have to keep telling this truth over and over until it penetrates, maybe one person at a time. It will. You've been such a strong voice, Laura; you've helped so very many people. I'm so glad to know you.

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  3. Thank you for posting this, it is a difficult message to state, send, share and accept, let me preface this by saying that i start all new sessions and groups by letting parents know that i know and believe that "parents do not and cannot cause their child to develop an eating disorder", I do maintain that parents do not cause the ED but need to be part of the solution. I do not interpret this message as parents are to blame but more so that once a parent or loved one is aware that they are dealing with an ED and see that their child is suffering from all of the symptoms of malnutrition and starvation the parents role then needs to become doing whatever needed to make it all about food is medicine and supporting their child in eating. Obviously easier said then done and not everyone is able to do this at home, it takes a lot of patience, commitment, resources and support so in some cases that role entails getting the needed treatment and resources to accomplish this. However I have seen where in some situations even when armed with the knowledge and cognitive information there is such resistence and denial, (please note that these are also characteristics of the illness) that more energy is spent blaming providers, other family members, dealing with resistence and during this time the adolescent remains sick and starving and treatment is impeded. What I hear Laura saying is how important it really is to make food medicine, first and foremost we need to re-feed our youth, get them medically and nutritionally stabilized and really leave the blaming at the door in order to be effective in organizing the army, the team that is to support, re-feed and restore. Let today be independence day for all including our youth that are afflicted. Food really is medicine and although it cannot cure all the ailments it needs to be the foundation. Okay that is my rant for the day! Happy 4th.

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  4. I hear your point but today I am asking myself how do I get there without asking, begging, demanding. I invoke 'medicine is food'. I counter resistance with 'you are not in a state to judge your own health'. I remind, cajole, cheer on, provide quantities of 'safe' foods, prepare 'safe' foods, encourage trying 'just a bite' of something else to expand the choices of 'safe' foods. I go to appointments and weigh ins to keep the discussions honest.

    I'm exhausted and discouraged.

    He's lost another pound since his last weigh in despite the cooking, shopping, eating with him and long discussions. When does he reach the point of taking responsibility for his part in all this?? I know he's not capable of thinking logically when he's this thin but I'm reaching the bottom of my repetoire and don't know if I'm even making a dent. Apparently I am at fault for all of this.

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  5. Please know Karen you are NOT at fault for this. Yes not seeing progress in regards to weight is so frustrating, if he is eating and doing what he needs to do then I phrase that as you are doing the best that you can, your body is not cooperating right now because you are so malnurished and it is going to need much much more then a typical boy your age however WE can do this, you are doing your best and yet are going to need to do more and keep doing better.Depending on his age, I find that many youngsters under the age of 16 that tend to have fast metabolisms need anywhere from 3200-4000 calories consistently to first interrupt weight loss and then to gain and that is with NO activity. Best way to do that is with 3 meals, 3 snacks PLUS boost plus or ensure plus drinks moving up to 2 per day and then to make more appealing and add calories try making smoothies out of them. You are doing EVERYTHING within your ability right now, it is hard, exhausting and frustrating but you are not the cause, you are being part of the solution though!

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  6. I agree with you, Mary, that parents have limitations in our own wiring. I guess I rant on about this topic because I think fellow parents will hear it from another parent. I'm trying to reach the parent who is ready but doesn't know what to do.

    Samsi has good advice, Karen. You have to keep your goal clear, and your stamina high. It is easy to feel despair because THIS IS HARD. But once you have a direction, and you get any glimmer of success, you'll get the strength to press on.

    If I may offer this bit of advice: you sound as if you are trying to reason with your son. I just don't think it works. I think at this point the only thing possible is to offer zero choices. No "Door Number Two." No "if" you eat this "then."

    It is "eat this food in front of you - and I'll help you do it - or I call the doctor to discuss hospitalization." And then do it.

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  7. Thank you for your supportive words. I know this is a long uphill battle and I am determined to drag him him up the hill any way I can. It is complicated in several ways.

    A) he is male. The struggle to get support for this has been ridiculous. Programs I have located are geared for teen aged girls and the staff involved seem to be unsure how to approach male anorexia. Our PCP's list of couselors was out of date and the insurance company was absolutely no help. After many, many phone calls I located a firecracker of a nutritionist and a counselor he loves to talk to.

    B) He is nearly 19. His age limits the legal edge I have as parent. HE has to give permission for me to see his records. The irony is that for a bone density scan we had to go to the pediatric hospital as the imaging facility we originally went to refused to do it as there machine wasn't calibrated for men under 21 - this makes no sense to me at all but we went and sat on tiny plastic chairs and played in the the sand table until his turn.

    C) He is in an intensive program in university. He very much wants to get back to school in the Fall but we are wary of letting him out of sight. He will be coming home every weekend again. He did maintain a weight last semester, lower than we'd like but didn't lose. He's lost 8 pounds in the 2 months he's been home. I feel we ought to keep life as 'normal' as possible so that anorexia doesn't bloom out of proportion. That's putting it awkwardly but I don't think giving it center stage is the right approach with him. I want his focus to be on his future, not on his weight. Is that wrong?

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  8. You are right on track, the hopes, dreams, goals, aspirations for your son are all that an effective mother would want and if i had to guess congruent with what he wants for himself. Where about do you live? the fact that you found a counselor that he connects with is phenomenol that is one of the biggest challenges in working with males, getting a connection in the therapeutic relationship. I support you in remaining firm and consistent. Appropriate criteria for going away to college would include: weight stable at least at low end of medically determined range, vitals and labs within normal limts on consistent basis, ability to eat enough variety and with adequate flexibility to maintain weight and activity that accompanies being at school and having a comprehensive treatment plan while at school therefore requiring less intense treatment and monitoring. If those terms are not met then really what kind of college experience is it for him? I realize that it is hard as the mother to see him not doing what he wants but in all honestly most kids are not ready to be living independently right of out high school therefore if he is somewhere local the first year or two and makes progress in his recovery that will afford him endless possibilities down the road. My advice, do not apologize for your actions and behaviors, they are those of a loving mother seeking to assist and facilitate her sons, health emotionally and physically and ultimate happiness. Keep pushing you are doing great!

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  9. Karen,

    I am both an adult (almost 27) who is recovering using home refeeding, and someone who is a good friend of samsi's.

    You still have leverage after 18. You can still provide loving care, food, support, love, and more love. Feeding your son is an act of love.

    Speaking as the person being fed, it sucks at first. Your son is probably scared stiff.

    But you are doing the right thing. If your instinct says keep him home, than do so. Maintaining even a lower weight than what he needs to is not optimum health. And I know that it seems that providing safe foods seems compassionate, and is getting him to eat something, but in the long term, to sustain recovery, he needs to eat more, both in terms of calories and variety. The first time I went through weight restoration, I needed upwards of 4000 calories per day. At 21. This time, at 26, I needed probably around 3200. Now, to maintain, I need about 2400-2500 cal/day.

    Remember: you are doing the very best you can. Your love of your son speaks loud and clear.

    Visit www.maudsleyparents.org for some really good information.

    All the best.

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  10. Make sure that you do take care of yourself Karen. Kids in general can wear us out but you have quite a challenge as does he.
    Make sure you're taking some type of stress tabs...b vitamins or even the omega fish oils help. Get out with friends or even alone.
    You are on the right track! I agree with Laura that you may want to be careful you don't give too much conversation to the ED. One mom played scrabble while eating. Some read books aloud. Music may help?
    Instead, at non eating times ask about other things. It helped my daughter a lot to use affirmations that would contradict the messages that shouted at her. She's tune the ED out in this way. Setting goals helps too.
    Keep going! You are wonderful to be carrying on when it would be easy to run away from home, I'm sure.

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  11. You are all so sweet and supportive, thank you. I will read up on the Maudsley site and try not to worry myself bald in the meanwhile. I will try distraction at meals so the focus is not on eating. He does have to eat by himself after dinner unfortunately to get in all he is supposed to. His target is 5000 Cal per day which boggles my mind. Because of work schedules and other life interruptions one meal a day together is what I can manage but I can try to push his food choices then. He's getting fish stew tonight and a pineapple/banana/soy protein smoothie. I know he wants to go back to school so I am hopeful that's enough incentive to get back to a minimally healthy weight. I just feel I am walking a fragile fence.

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