We cannot save our children.
They must want to save themselves.
We can love them unconditionally and attempt to keep
them alive while they develop that desire.

Often, as parents, we experience a tremendous amount of shame when our child develops an eating disorder. We must face and work through (or in spite of) our shame. These illnesses come with a tremendous amount of stigma that is neither deserved nor helpful. We must not keep our child's eating disorder a secret. The illness will demand that of us, but this is a demand we must refuse. Gently, we need to inform our child that we will speak openly with others, without shame, about their illness so that we are not isolated from the support and resources that others can offer. If the diagnosis were cancer, would we remain silent? Would we wait for our child to want treatment? Would we allow them to hit bottom before we took action?

OUR IMMEDIATE ACTION IS NECESSARY, BUT IT MUST BE INSTITUTED WITH CARE AND LOVE: WE NEED PROFESSIONAL GUIDANCE ON HOW TO ACT AND SPEAK SO THAT OUR CHILD CAN HEAR US...AS WELL AS INSTRUCTION IN HOW TO LISTEN SO THAT WE ARE ABLE TO HEAR BEYOND OUR CHILD'S WORDS

Please know that our feelings of frustration, fear, powerlessness, confusion and yes, even anger (or yes, especially anger), are shared by all parents whose children are disordered eaters. Our job is not to yell, threaten, browbeat, inflict guilt, or judge either ourselves or our child. While we learn all we can about Eating Disorders, we can share our honest concerns and provide loving support as well as the support of professionals. Recriminations and outbursts waste valuable time.

Please also know that this illness is not our child’s fault. It may seem that they are making choices that have put them at risk and make no sense, but we need to understand that their ability to “choose” does not exist. The development of an eating disorder is extremely complex, and once it becomes clinical, it is an emotional and psychological addiction.

We may ask, “Then whose fault is it, if not my child’s?” Assigning blame is so very seductive … it makes things somehow more tidy and manageable and far more comprehensible. It, again, wastes valuable time and energy. . . time and energy that should be focused on the healing of our children. As parents we all make mistakes but there are factors over which we have no control: the combination of genes our children inherit, their specific temperaments and how they interpret events around them, the messages they receive from peers and the culture at large, and so on and so on.

We may not cause our child's eating disorder, but we can be one of the contributing factors toward its development through our attitudes, lifestyle and inadvertent comments. To help us become a part of the solution, NEDA (The National Eating Disorders Association) offers the following guidelines:*1

Do not promote the erroneous belief that thinness and weight loss are great, while being large, having body fat, and/or weight gain are horrible or indicate laziness or sickness.

Avoid categorizing foods as "good/safe" vs. "bad/dangerous" or using language such as, "I can't afford to eat that, I've been bad all day!"

Avoid overemphasizing beauty and body shape and conveying an attitude that says, "I will like you better if you lose weight; don't eat so much; look more like slender models; or fit into slimmer clothes."

 

Learn about and discuss with our families the genetic basis of differences in body types. Link respect for diversity in weight and shape with respect for diversity in race, gender, ethnicity, and intelligence.

Help children appreciate the ways in which television, magazines, and other media distort the true diversity of human body types and imply that a slender body means beauty, power, excitement, and sexuality. [to share with your child an excellent example of the manipulations of appearance made by the media go to http://www.campaignforrealbeauty.com/ Find the "Evolution Film" box and press on "watch the film" ]

Learn about and discuss with our children, particularly those over the age of 9, the dangers of trying to alter our body shape through dieting. Dieting is not a harmless pursuit or a necessary accompaniment to a healthy life. It is associated with irritability, depression, fatigue, excessive self-consciousness, and, paradoxically, binge eating and long-term weight gain. There is also increasing evidence that long-term dieting is a risk factor for such things as coronary heart disease. Many of those in the Eating Disorder field refer to diets as "the gate-way drug" to an eating disorder: dieting and excessive exercise can be dangerous to our health.

Accept our children no matter what they weigh. Help them to understand the uniqueness of everyone's body build and the importance of the person, not the appearance.

Avoid rewarding or punishing children with food. This adds to the emotional meaning that food can assume.

Trust our children's appetites. Do not limit their caloric intake unless a physician requests that we do this because of a medical problem. Relearn for ourselves how to eat intuitively and then guide our children to do the same [see http://www.intuitiveeating.com]

We can set an example of balance and moderation for our children by:

• Eating a well-balanced diet that is positive and flexible and depends on internal cues [hunger, satiety] for regulation [see http://www.intuitiveeating.com for the antidote to dieting]
• Exercising moderately for pleasure and health
• Accepting our own shape and weight [NEVER making disparaging remarks about anyone's body, including our own]
• Engaging in and enjoying a variety of activities regardless of our size or shape
• Enjoying the creative aspects of fashion while rejecting the limiting and constricting aspects

I wish I had known that to increase the likelihood of a cure, Andrea needed COMPETENT, INTENSIVE, AGGRESSIVE, and EARLY treatment.

Andrea began therapy within 3 weeks of the first time she threw up, meeting with a therapist often more than once a week for the entire summer before her sophomore year in college. She also had sessions with a nutritionist and was checked out by our family doctor, dentist and dermatologist. She was prescribed antidepressants in an attempt to curb the urge to purge. Sounds early. Sounds intensive.

Early would have been prior to her throwing up. I would have seen her need to walk everywhere, weigh herself daily, know the caloric content of the food she ate and the belief that her life would be better if she was thin as forms of disordered eating and as g-i-g-a-n-t-i-c warning signs that things were not okay. I did not know that disease can lurk in the absence of moderation.*2

Competent, Intensive and Aggressive would have been with a TEAM that was aware of each others’ responsibilities and were in continual dialogue (not necessarily located near each other).

A team that would have included…

…therapists, both individual and family, who were extremely well-versed and skilled with eating disorders, depression, body image issues, and addiction; who would have coordinated and facilitated the efforts of the treatment team, keeping lines of communication open and active. A family therapist who would have met with us as often as needed, guiding us in our understanding; who would have encouraged us to vent with them; who would have reminded us that the behaviors were not Andrea’s fault and who would have stated at our first visit that Andrea was at risk of developing an insidious emotional and psychological addiction that could easily lead to death. A therapist who would have helped us separate our daughter from the eating disorder--so that our anger could be directed at the real culprit. An individual therapist who would have unmasked the cover-up functions of Andrea's abnormal eating;*2 who would have deliberately and with purpose taught her alternative approaches to coping and problem solving; who would have worked with Andrea to set realistic goals (vomiting 3 times as opposed to 4, etc.).*2 Therapists who would have taken our daughter’s illness extremely seriously and insisted that it be viewed that way by Andrea, her physician, her nutritionist and us: the very same way we would view an invasive cancer.

…a physician or medical provider who was concerned and knowledgeable about the progression of eating disorders; who, if not knowledgeable about eating disorders, was willing to become informed; who would be a team player and be willing to communicate regularly with the other members of the patient's treatment team; who understood the need for, and made it a habit of checking vital signs whenever a young person came into their office; who understood the effects of the media so well that their office reflected this sensibility and was filled with magazines and articles promoting a non-dieting approach to well-being; who recognized that their role was vital to recovery but that an eating disorder is a psychiatric disorder with medical ramifications and not the other way around; who, when a 19-year-old came to them complaining of fatigue, with a low pulse rate, exhibiting weight loss and knee pain would have had warning lights blinking so intensely that a moment of knowing clarity would dawn and their concern for our child would have been immediately shared with her.

…a nutritionist or dietitian who understood that Andrea's Eating Disorder was not about food but about how she felt, thought and coped with the stressors of life *2 and who could work with the TEAM to help guide and educate her toward what "average" eating looks and feels like. [Again, please see http://www.intuitiveeating.com]

Today, I would seek an even broader path, making sure that the therapist had experience beyond a cognitive behavioral model including alternative holistic therapeutic practices and perspectives interwoven with a protocol that contained alternative methods of healing such as, hypnosis (only with trained and certified practitioners knowledgeable with its applicability in treating disordered eating), massage, Healing Touch Therapy (for more info, please see http://www.heartofhealing.net), meditation (such as that offered by Pema Chödrön, American-born Tibetan Buddhist nun whose teachings include the meditative practice of tonglen, found in her Good Medicine audio tape or CD available through Sounds True, 1-800-333-9185/ www.soundstrue.com), acupuncture, yoga and/or any other valuable adjuncts to treatment recommended by the treatment team.

I wish I had modeled, throughout Andrea's life, unconditional self-acceptance in my words, attitudes and actions.

I wish I had understood that the black and white thinking {good/bad; fat/thin, safe/dangerous, etc.} Andrea exhibited was a part of the disease (and a characteristic way of speaking that I shared with my daughter).

I wish I had been able to recognize and put aside my own misconceptions about eating disorders.

I wish I had understood that Andrea was not fully aware of, or able to articulate, her emotional pain. Indeed, eating disorders alter brain chemistry and cause distortions in thinking that do not allow for rational thought--we must be our child's advocate.

I wish I had known that as soon as clinical symptoms (starving, bingeing, purging) became apparent, Andrea was in the early stages of an emotional and psychological addiction.

I wish I had truly understood how emotionally and psychologically addictive were her behaviors:

Andrea was no longer in control. She could not stop herself, no matter how hard she tried--she no longer had “choices.” She was on a downward spiral and did what she could to hide and protect her illness at the same time believing that she could stop when she chose … not because she was “bad” or dishonest … because that is the nature of the disease. Like a drug addict, a disordered eater often must have not one, but two or three, serious scares before convinced they have a problem that requires a commitment to treatment. My daughter could not heal by herself and she would not heal quickly—she would not be okay and get through this, no matter how many professionals assured us that was the case.

I wish I had said to Andrea, the one time she mentioned feeling a bit dizzy, “It is important that things are okay inside your body. Do you want to call the doctor today for an appointment or should I?” I would have been certain when the appointment was made that it was understood Andrea needed her pulse/heart rate, temperature, urine, blood pressure and blood checked. Because blood tests often do not indicate problems (even when problems exist) they should not be relied upon as the sole indicator of difficulty. Better to check pulse and heart rate than blood (a starved heart will be weak and slow).

I wish I had known that more people die of bulimia than anorexia, often due to the electrolyte imbalances caused from purging.

I wish I had known that a person can look and feel fantastic and be close to death.

I wish I had recognized that Andrea being cold all the time was a sign of hypothermia.

I wish I had been told that the long, feathery eyelashes I one day noticed in the last weeks of her life were a warning sign. Lanugo, the baby-fine hair that often covers the bodies of those who are starving, can manifest itself in the eyelashes. Andrea did not look starved.

I wish I had not accepted our culture's "normalization" of diets. I thought Andrea's preoccupation with weight and body size were normal 'rights of passage' that would recede with time, as mine had. Andrea was not me.

I wish I had shared with Andrea that it is natural during adolescence (approximately ages 10-21) to gain from 20 to 50+ pounds as the female body readies itself for childbearing.

I wish with all my heart that I had been more of a parent and less of a friend in the final months of Andrea's life. As her friend, I lost my objectivity. My empathy for her led, at times, to a subtle and inadvertent support of her disease...how I wish I could change that reality!

Some additional warning signs:*3

The problem with physiological/vital sign instabilities is that they often cannot be felt or detected by the person experiencing them. You can feel and look perfectly fine and be close to death.

If ANY one of the following signs are present, hospitalization is indicated:

Bradycardia: a pulse rate less than 60 beats per minute, in youth ages 14-21, is NOT NORMAL. A pulse with fewer beats is not an indication of physical fitness—even elite athletes in this age group who are in the very best of shape rarely have a pulse rate less than 60 beats per minute. A pulse rate below 60 may indicate a need for careful weekly and/or daily monitoring (six months before Andrea's death, her pulse rate was 58). For the average person, lower than 60 can be DANGEROUS!

Hypotension: low blood pressure, low heart rate.

Hypothermia: cold intolerance. You are cold most of the time, you feel it and so does someone who holds your hand. You are putting on a sweater when others around you are comfortable.

Orthostatic changes: Changes in blood pressure from lying (for 5 minutes), sitting (for two minutes) and standing positions. This is an easy test that can often show whether a problem may exist.

Other signs indicating hospitalization is necessary (again, only one sign is needed to be in critical condition):*3

• Acute food refusal
  
• Uncontrollable bingeing and purging
  
• Dehydration (pinch your child’s skin, if it remains pinched for any length of time: get a physician’s opinion)
• Electrolyte disturbances in the blood (sodium or potassium)
• Severe malnutrition, i.e., weight less than 75% of ideal body weight
• Cardiac Dysrhythmias
• Failure of outpatient treatment—you’ve been trying the TEAM approach but it is not working. More intensive treatment is indicated.
• A diagnosis such as severe depression, obsessive compulsive disorder, or severe family dysfunction, that interferes with the treatment of the eating disorder.

There is a model that suggests six stages of change [Prochaska, Norcross & Diclimente, 1994]. It describes healing as a process where progress is not necessarily linear--it can include starts and stops, steps forward and back, eventually leading to mental and physical health.

The six stages include: Precontemplation (Denial) (I don't have a problem--you're the one with the problem); Contemplation (Something is not right with me, but I'm not sure I want to give it up just yet.); Preparation (I may be ready to seek help); Action (I began seeing a therapist today. My next appointment is in three days); Maintenance (This process is so very hard! It's taking more time than I ever thought possible. I WILL keep going. I must keep going!); and Termination (I am recovered!). The process is often a slow one. It can take an average of 3-5 years to arrive at the stages of preparation and action. Remember, too, that a lapse is not a relapse and a relapse is not a collapse (or an excuse for one).

Tragically, Andrea's body gave out before we gained all the insights listed in this web site, a mere 13 months after the first time she made herself throw up. I would like to believe that she would have been in the group who, with proper care, recover completely. My wish is that you will learn from our family’s experience. In this way, your child may be one who recovers and you will be spared the unimaginable and horrific pain of losing a child.

May God bless you and guide you.