Everybody Knows Somebody: One Mother’s Perspective on Her Anorexic Daughter
The national obesity crisis is mentioned constantly in the media. But there is another epidemic going on: There are millions of people suffering from eating disorders, and these diseases are grossly misunderstood. The week of Feb. 26-March 3 is National Eating Disorder Awareness Week. It is all about spreading awareness regarding eating disorders and providing help and hope to those who suffer from them. This year’s tagline for is “Everybody Knows Somebody.” Consider these eating disorder facts*:
- Eating disorders are not a choice, but rather complex illnesses triggered by using eating as a way to cope with difficult experiences or feelings. They often coexist with other psychiatric disorders such as depression, anxiety, obsessive-compulsive disorder, post-traumatic stress disorder, attention deficit hyperactivity disorder or substance abuse.
- Some 25 million Americans struggle with an eating disorder, including 7 million men
- More people die from eating disorders than from any other psychiatric illness.
- More women struggle with eating disorders than with breast cancer.
- Eating disorders affect all ethnicities and sociocultural communities.
- There are four types of eating disorders: anorexia nervosa, bulimia nervosa, binge eating disorder and Eating Disorder Not Otherwise Specified, which includes overexercising.
Recently, a woman I didn’t know asked me to help spread awareness of eating disorders by talking with her about her anorexic daughter. She insisted their identities be kept anonymous, but this is her verified story.
A Healthier Michigan: Tell me about your experience with eating disorders.
Mother: I was pretty ignorant about eating disorders until my daughter was diagnosed with anorexia at age 11. She has suffered from this insidious disease for six years, and remains very sick despite consistent intervention. At first, I don’t think she was even aware that anorexia had taken hold. Over time she has become very aware of it, as it consumes her thoughts constantly.
Fortunately, she seems more mentally mature now and is fighting harder than she ever has, so we hope she can ultimately recover. It will be a long road, probably with many ups and downs, but we will be there along the way to support her.
Q: How did you notice that your daughter had anorexia? What signs or symptoms did you see?
A: Our pediatrician was tipped off by a 6-pound weight loss over three months. During that time, my daughter had experienced some dissatisfaction with her body and been in a situation where she used controlling her diet to manage uncomfortable feelings. Suddenly she was interested in healthy snacks and the caloric contents of food. It didn’t take long for this to spiral out of control.
Q: How did you approach her about it and discuss this with her?
A: We didn’t need to approach or confront her, since it was identified by a physician. We followed the physician’s advice and aggressively intervened by immediately consulting a dietitian, psychologist and adolescent medicine physician, all of whom were experts in eating disorders. This launched a seemingly endless cycle of medical visits (sometimes several per week).
Unlike other diseases, the (anorexic) patient doesn’t fight with you to get better but against any intervention. Food is her medicine and she needs supervision and guidance to make sure she eats the right foods and right amounts to allow weight gain and improved brain function. Unfortunately, this often creates an adversarial relationship between parent and child or between the patient and the treatment team. We have to try to paint a picture of her, us and the treatment team all fighting against the eating disorder.
Q: How has this disease impacted her, you and your family?
A: This disease has taken an extreme toll on all of us. My daughter has lost so much: her adolescence, physical health (osteopenia, low heart rate, hair loss, etc.); she has lost friends and pushed close relatives away. She is consumed with eating-disordered thoughts most of the day, every day.
Imagine having a voice in your head that constantly belittles you (“you’re fat”) or taunts you (“you are a loser if you eat that muffin”). She is struggling to keep up with school because she has missed so much due to hospitalizations. She has lost personal freedom because her meals and snacks are supervised and she can’t drive (too weak, too risky). She has lost opportunities: She can’t participate in programs away from home, or extracurricular activities (physically compromised, or has so many appointments), and she will likely not be able to go away to college. This is no way for a 17 year-old to live.
From a parental perspective, at a time when we should be getting ready to push our beautiful, talented daughter out of the nest towards a life full of college and professional opportunity, we have to keep close tabs on her, treat her like a young child and worry constantly if she is going to make it through the day. At a recent low point, we had to check on her every hour during the night to make sure she was still breathing.
This has consumed a variety of different resources, including time — so many appointments, expensive out-of-state travel, and living expenses while she was treated away from home and we participated in her treatment. We have also made professional sacrifices. And frankly, we are exhausted. But we can’t give up. Because it is our daughter who is so sick and we love her more than anything and want her back, so we continue to support her in her fight for recovery.
Q: What kind of treatment have you received and sought out?
A: Most of the time, we have used outpatient treatment from a team consisting of a dietitian, psychologist and physician, all with specialized experience in treating eating disorders. The most critical intervention is to restore nutrition and weight so that psychological interventions can be successful. Her weight has gone up and down over the last six years. In the past 15 months, she gained 40 pounds and lost it again. She has never been able to restore the weight completely and maintain it so that the therapy can be productive.
In addition, she has been hospitalized three times due to lack of success on an outpatient basis. Two of the hospitalizations were emergency admissions due to severe physical deterioration. She has participated in two out-of-state inpatient or residential programs that specialized in eating disorder treatment.
Q: What has helped the situation? What has hindered it?
A: We have been lucky to have specialists on our side since the beginning. My daughter’s case is extremely complex and confounding, even to the experts. Sometimes we have changed providers for a different insight or approach. For a long time I wanted to respect my daughter’s privacy and felt a certain sense of shame regarding her disease. But I have found that doesn’t help. My close friends who support me and understand are invaluable.
One of the out-of-state hospitalizations required almost daily parental participation in educational groups, family therapy or group therapy. The educational component of this program was extremely helpful in many regards. In addition, networking with and receiving support from other families going through similar experiences was beneficial. The world of eating disorders can be very lonely — both for the patient and for their families.
We have encountered ignorance, even among medical professionals. I think it helps to be vocal and try to educate the general public. When I have more time I plan on becoming much more active in this regard.
Q: What have you learned?
A: Unfortunately, I now know a lot more about eating disorders than I ever wanted to. I have learned that they are not a choice and ironically, while they seem like a way to control feelings or anxieties, ultimately the victims of eating disorders lose control of everything. I have learned to never give up, to take a break when I need it, to support others who struggle with this or any other catastrophic illness or circumstance.
I have learned that my daughter is brave — especially now when she seems more mentally motivated to battle ED (our nickname for her eating disorder) than ever. She is facing her greatest fear (eating) every time she takes a bite, several times a day.
Q: What advice would you give to other mothers or parents with a child who has an eating disorder?
A: Be brave and be strong because you are fighting for your child’s life. Do not blame yourself — you did not cause the eating disorder. Take care of yourself because this can be exhausting. Find a comprehensive treatment team consisting of physician, dietitian, psychologist — all need to have specialized knowledge in the area of eating disorders. Outpatient care is the best choice if possible, but there are many good inpatient programs if necessary.
If I have raised awareness through my story so that someone else’s family doesn’t have to go through this, I will have been successful. Please understand that eating disorders are real, complex diseases with really horrible consequences. Know the warning signs, reach out to those in trouble and guide them to qualified professional help. Don’t wait. This disease takes over quickly and is harder to eradicate the longer it has been there. Early diagnosis and intervention significantly enhance recovery.
Everybody knows somebody. Don’t be afraid to act. You may save a life. ◊
Eating Disorder Resources
The woman also passed along some useful books and resources; I added a few others:
- “Help your Teenager Beat an Eating Disorder” by James Lock, MD, Ph.D. and Daniel Le Grange, Ph.D.
- “Skills-based Learning for Caring for a Loved One with an Eating
Disorder: The New Maudsley Method” by Janet Treasure, Grainne Smith and Anna Crane
- BEDA – Binge Eating Disorder Association — bedaonline.com
- EDC – Eating Disorder Coalition for Research, Policy and Action — eatingdisorderscoalition.org
- FEAST – Families Empowered and Supporting Treatment of Eating Disorders — feast-ed.org
- NEDA – National Eating Disorder Association — nationaleatingdisorders.org (1.800.931.2237)
- NAMED — National Association for Males with Eating Disorders — namedinc.org
- SOMETHING FISHY — something-fishy.org
- FED UP, Inc — fedupinc.org/
- EATING DISORDERS 101 — YouTube
I am so thankful to this mother and her insights regarding eating disorders. Growing up as a dancer, I definitely knew people that suffered from various types of eating disorders. Think about it: Do you know someone too? Take the time to help them.
Photo Credit: Neil Mullins via Flickr
*Resources: National Association of Mental Health, National Eating Disorders Association, and Binge Eating Disorders Association.