By Chris, the mother of a son with an eating disorder

About a year ago, my son was diagnosed with an eating disorder. With his permission, I am sharing his story to help raise awareness of the often stigmatized and taboo topic of eating disorders.

Eating disorders are serious, life-threatening, treatable mental and physical illnesses, and can affect people of all genders, ages, races, religions, ethnicities, sexual orientations, body shapes and weights. Please read and re-read that sentence and let it soak in.

I was on high alert about eating disorders because I’ve seen loved ones and friends suffer from it, and I tried my best to prevent it from happening to my youngest child. But at their core, eating disorders are sneaky, complex, controlling and manipulative diseases that trick people into believing that starving themselves is a healthy way to live.

“Ed” — what our family calls eating disorders — thrives on a person’s willingness to gain control at any cost whether it’s lying, keeping secrets or dying. That is why oftentimes a diagnosis isn’t made until there is a serious medical complication.

Ed thrives and survives on the malnourishment of a person. The weaker a person becomes; the bigger and stronger Ed becomes.

In my son’s case, Ed had convinced him to stop eating because that would take all his worry and anxiety away, one way or another. We didn’t realize how far Ed has pushed our son until his blood work showed that he had several vitamin deficiencies. That led to his official diagnosis. Before he could get into a treatment program, he needed to be medically stable. While we waited, he was being monitored weekly by his doctor. An EKG revealed that his heart rate was dangerously low, and we were sent to the Emergency Room where he was immediately admitted to Children’s Hospital of Philadelphia (CHOP).

Food as medicine

We were told by his Adolescent Medicine specialist, Michele E. Calderoni, DO, that he was very malnourished, and we were lucky that we got him to CHOP when we did. My son’s heart was damaged from malnourishment. That day, food became his medicine. He needed to begin a refeeding program to repair the damage that was done to both his heart and his brain. The hope was that once he was nourished, his heart rate would return to normal and he would be able to think clearly again.

He was so frail that he was placed on complete bed rest. His total focus was on eating and resting. There was talk of moving him to the intensive care unit (ICU) if his heart rate didn't rise to a stable level. I would not leave his side because I was terrified of what could happen. When he slept, I would read everything I could about eating disorders to figure out the best way to help him.

The projected 10-day hospital stay in the Adolescent Malnutrition Service became 24, but ultimately, our son was compliant and ate everything given to him. Once his weight and heart rate were medically stable, we were able to take him home where he remained on complete bed rest for 10 days; he was only allowed to move from his bed to the couch.

Family-based treatment

Our doctors at CHOP recommended we try a community outpatient family-based treatment (FBT) program, which research has shown can promote long-term recovery of eating disorders. It requires full parental control of planning and serving his meals, which are given every two to four hours, plus 24/7 monitoring (even in the bathroom) to ensure there are no opportunities for relapse. For FBT to be successful, we all had to be on board with the plan, and after several discussions with Dr. Calderoni and his other his doctors, our family agreed to try it. There has been pushback, there have been arguments, and some days have been better than others.

For my son, almost 18, giving up his independence and not being able to do normal teenage things was very hard and made him angry and sad most days. For me, those were the hardest days because my normally loving, caring, compassionate and funny son was distant, angry, rude and dismissive toward me. As I continued to learn more about Ed, I realized that it was Ed that made him act that way, so it could try to regain control. Ed does not like it when my son eats because that weakens Ed. When Ed feels threatened, it tries harder to push me away by being mean to me. But Ed won’t succeed because I will never give up. I will not let Ed take my son’s life.

It’s been nearly a year and recovery has been an ongoing journey. We have a great team in place, my son is fully weight restored. He continues to see Dr. Calderoni to make sure he maintains his health. Over the year, he slowly but surely “earned” more independence. We continue to take things day by day because we know that the war against Ed is not over. Looking back, some days were so overwhelming I honestly don’t know how we made it through. But in the end, we rely on the strength of our love for one another to keep us going.

The bigger picture

As a society, to fight this horrible and potentially deadly disease, we need to acknowledge its existence. Help and treatment should be more readily available. We should be having open and honest conversations about eating disorders; ignoring or keeping them secret only makes “Ed” more powerful.

To start the conversation, here are a few important facts I’ve learned that have helped me to deal with Ed:

• No one knows for sure what causes eating disorders, but they are not a choice! They are bio-psycho-social diseases, which means that genetic, biological, environmental and social elements all play a role.
• An estimated 20 million women and 10 million men in America will have an eating disorder at some point in their lives; some starting as early as 12 years old.
• Eating disorders have the highest mortality rate of any mental illness because of medical complications and suicide. Medical complications include heart attack, kidney failure, osteoporosis and electrolyte imbalance caused by starvation, binge eating and purging. People who are malnourished can’t think clearly and because they have such intense emotional distress, are at higher risk for suicide.
• Eating disorders are not a “girl” thing! Disordered eating is increasingly prevalent in males of every age group.
• Disordered eating can be an attempt to control one thing in your life when you can’t control anything else.
• There is no one to blame! As much as I wanted to blame myself for causing it, not seeing it, or not advocating enough for my child when I suspected Ed was planning its invasion into his life, it was not my fault. It was not his fault. The reality is this: The search for fault or blame drains the energy needed to fight Ed. Blame won’t help with the recovery process, and it isn’t going to make anyone feel better.
• Full recovery is possible, but it takes time, commitment and a great support team; there is no “one size fits all” treatment or quick fix.

If you know someone or suspect that someone is suffering from an eating disorder (or any other mental illness), please try to get them help as soon as possible. Treat any unusual signs or symptoms of disordered eating as you would any other serious illness — like cancer, diabetes or heart failure — and help the person get the medical attention they need, before it’s too late.