In April, 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.
My mom radar has always been on high alert and hyper-sensitive to this disease because I’ve seen loved ones and friends suffer from it. Admittedly, I have spent the last few years being overly worried about my youngest child getting sick from an eating disorder, and I tried my best to prevent it from happening. 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. One of the first things I learned 4 months ago, is that “Ed” (aka eating disorder) thrives and survives on the malnourishment of a person. The weaker a person becomes; the bigger and stronger Ed becomes.
It’s hard to get an early diagnosis because Ed is great at hiding. Ed thrives on a person’s willingness to gain control at any cost whether it’s lying, keeping secrets, or dying. Often, a diagnosis doesn’t happen until there is a serious medical complication.
In my son’s case, Ed had convinced him to stop eating because that would take all his worry and anxiety away once and for all, 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. It was then that he was officially diagnosed and that we tried to get him into a treatment program. The waitlists for these programs are unbelievably long, and we needed to prove that he was medically stable to participate. Until we could find him a spot in one of those programs, he was being monitored weekly by his doctor, and that’s when it happened; an EKG revealed that his heart rate was dangerously low, and we were sent to the Emergency Room where he was immediately admitted to the hospital. After admission, we were told that he was very malnourished and that we were lucky that we got him to the hospital when we did. Eating disorders affect every organ in the body, and my son’s heart was damaged from malnourishment which was caused from restricting and purging food. 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. They told us that he would be staying in the hospital anywhere from 7 to 10 days.
He was so frail that he was placed on complete bed rest and the only thing he could do was focus on eating and resting. The entire time we were there I slept very little because I would watch the monitors and his heart rate drop each night. One night they almost moved him to ICU because they couldn’t stir him enough to bring his heart rate up. I would not and did not leave his side because I was terrified of what could happen. During the day we would watch silly reality TV shows to pass the time and when he slept, I would read everything I could about eating disorders to figure out the best way to help him.
There were many ups and downs during our hospital stay, but ultimately, our son was compliant and ate everything that was given to him. Once his weight and his heart rate were medically stable (it took 24 days for this to happen), we were finally discharged and 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 our couch. Our doctors at CHOP recommended that we try an outpatient program called Family-Based Treatment (FBT). The science behind FBT has shown that it is the best treatment for long term/full recovery of eating disorders. At first, we were skeptical about this approach because we were not sure we could handle it. It is a full-time commitment that not only requires full parental control of planning and serving his meals, but monitoring him 24/7 to ensure that there are no opportunities for relapse. Meals need to be eaten within a certain amount of time and need to be served every 2 to 4 hours, and there would be no negotiations over the food being served. He was only allowed to use the bathroom at certain times, and had to be monitored when he did. Our son is almost 18, and since he is the youngest of three, he has enjoyed a fair amount of independence while growing up, so we weren’t convinced that these strict FBT rules would be the right treatment for him. In order for FBT to be successful, we ALL had to be on board with the plan, and after several discussions with his doctors, as a family, we agreed to try it. There has been pushback, there have been arguments, and some days have been better than others.
For my son, 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 some of the hardest days because my normally loving, caring, compassionate and funny son was distant, angry, rude and dismissive towards 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 its control over my son. Ed does not want me in charge. Ed does not like it when my son eats because that weakens Ed. When Ed feels weak and threatened it tries harder to push me away by being mean to me; but Ed won’t succeed, because I will never give up on my son. I will not let Ed take my son’s life.
Recovery is and will be an ongoing journey; we have a great team in place, my son is fully weight restored, and he is slowly but surely “earning” more and more independence. We continue to take things day by day because we know that the war against Ed is not over. Looking back, there were days that were so overwhelming that I honestly don’t know how we made it through. We have all been pushed to our limits and our breaking points, but at the end of the day, we rely on the strength of our love for one another to keep us going.
As a society, in order to fight this horrible and potentially deadly disease, we need to acknowledge its existence. Help and treatment should be more readily available than it is. We should be having open and honest conversations about eating disorders; ignoring or keeping them a secret only makes “Ed” stronger and more powerful.
To help start the conversation, I wanted to share a few important facts that I’ve learned over the past 4 months 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 that are 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. It 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 them get the medical attention they need, before it’s too late.
Taking it one day at a time,
Eating Disorder Resources:
The Eating Disorder Assessment & Treatment Program at Children’s Hospital of Philadelphia
Eating Disorder Family Support Network – Mom2Mom