National Eating Disorder Week is February 27–March 5, making this a natural time to share part of our story with you. It’s a long story, and I could write multiple articles from multiple angles of the journey. But this one will focus on some of the resources we found helpful as we navigated this unbelievably challenging time.
If you find yourself in a similar position, know that others have walked this path ahead of you, and as overwhelming as it might seem, there is hope. Most importantly, you are a good parent. One of the most encouraging things that anyone said to us during that time was that our feelings aside, no one was more equipped to support and help our daughter through this than we, as her parents, were. If any of this resonates with you, I’m sending all the hugs, fist bumps, tissues, wine/chocolate/coffee your heart can handle. And hopefully some of our story and these resources will help too…
It was the spring of our daughter’s fifth-grade year. We had gradually noticed her figure slimming and attributed it to her spurt in height. We noticed mood swings and attributed that to her natural inclination to be a big feeler. And we noticed pickiness regarding food and attributed it to wanting more independence in her tween years.
What we weren’t so aware of was the internal battle that was raging within her. A battle of anxiety and depression that she was fighting mostly on her own and using food, or the lack thereof, to try to control. {Early on in eating disorder treatment, you learn that the disorder is a coping mechanism for underlying issues. So, the goal is to stabilize the unhealthy coping mechanism—in this case, disordered eating—and replace it with more helpful, healthy ways of coping.}
When we took our daughter to the pediatrician’s office for a weight check, they verified she had in fact lost a significant amount of weight. I clearly remember the doctor looking my daughter directly in the eye and kindly but seriously saying, “No one your age should ever be losing weight. Let’s do some testing to rule out any physical reasons this could be happening. In the meantime, I want you to eat all the ice cream and favorite foods you want! See if you can gain one pound for me before you come back next week.”
That’s when it truly hit me. It wasn’t that we weren’t allowing her to eat those things, she wasn’t eating them because she wasn’t eating much of anything.
The next few weeks and months were a blur, as we were immersed in the world of eating disorders, something completely new and foreign to us. We started to do our own research and found www.nationaleatingdisorders.org to be the most informative, reliable website. We still didn’t know for sure that she had anorexia, just that we were likely dealing with an eating disorder.
Knowing that we had a mountain to climb, and still unsure of what the next step(s) should be, we begged and pleaded with our daughter to “just eat.” We calmly reasoned and gently explained why she needed to eat. We prepared food we knew she liked. Our pleading became more desperate, and louder, the further she dug in her heels and refused to take a bite. {In eating disorder treatment, you learn that ironically, it’s not about the food. So, the more anxious you get about the food, the more it adds to their anxiety. No one with an eating disorder has ever just started eating again because someone explained how important food is, that it’s fuel for the body.}
We looked for a counselor, but it was difficult to find one that specialized in eating disorders, much less with kids. It’s worth noting that, in our situation, because of her young age, and because of her rapid weight loss, we were in an acute medical situation. That isn’t always the case, and often early intervention through counseling and/or working with a dietician is helpful.
Thankfully, my husband found ERC, www.eatingrecoverycenter.com, and we had a consultation to learn more about their program and if it could potentially help our daughter. Thinking they might suggest after-school counseling, I was shocked when they said the best course of treatment for her would be through their PHP program (partial hospitalization program), seven days a week, early morning through the evening. I went to the bathroom to cry. I could hardly wrap my head around it, but we knew that we had to do something—even if it seemed drastic—to help her.
The main goal of a program like this early on is to stabilize weight. With anorexia in particular, the brain has been starved of nutrition, so step one is to gain back the weight, which in turn allows the brain to be strong enough to do the hard work that’s needed to fight the rest of the battle.
Telling someone with anorexia they need to eat a certain amount of food at certain times of the day to gain a certain amount of weight is like telling a cranky toddler they have to take a nap. There is no amount of reasoning that will help. That’s why they call it “mechanical eating.” The goal is to return to intuitive eating, where you can listen to and trust your body’s hunger and fullness cues.
After six weeks in PHP, she wasn’t making much progress. Insurance will only allow you to float in that phase for so long, so we had a decision to make—do we disenroll her or move her up to the next level of treatment, referred to as “residential.” Although we couldn’t fathom sending her to residential treatment five hours away, we also couldn’t fathom being on our own again. So, we made the difficult decision to send our almost 11-year-old to ERC in Dallas for six weeks.
Another stark memory of this time was the psychiatrist in Dallas telling us during our intake meeting to “buckle up,” insinuating that it was going to be a bumpy ride. That wasn’t the sensitive reassurance I needed at that point, but it was the truth. It varies for everyone, but her turnaround came at the point where a nasogastric feeding tube was the next step to prevent further deterioration of her condition. She started to eat again on her own! She made the first step in a very difficult weight restoration process. We visited every weekend, and in the meantime, everyday life went on for the rest of us—including both of our other daughters breaking their arms in separate “schoolyard” accidents. We’d never had a broken bone before this and very much felt the reality of “when it rains it pours.” Cliches exist because they’re sometimes true.
When she was discharged from Dallas, she went back to the PHP program in San Antonio and eventually stepped down to the Intensive Outpatient Program. During this time, we were assembling her outpatient team including a counselor, dietician, and psychiatrist. We were armed with a wealth of knowledge and experience at this point and relieved to have the past behind us.
Although there were other mountains left to climb to address the underlying anxiety and depression, we celebrated the progress made to that point. Several years later, my daughter has a healthy relationship with food, a deep compassion for those struggling with an eating disorder, and a willingness to help others on this path. There is hope for your loved one, and for you too, as you offer support, encouragement, and a way forward.
Recommended Reading:
Life without Ed, By Jenny Schaefer
Goodbye Ed, Hello Me, By Jenny Schaefer
Does this Feel Familiar?, Written by a collection of families, friends, and brave survivors
Anxious Kids, Anxious Parents, By Reid Wilson and Lynn Lyons
Other Resources:
www.nationaleatingdisorders.org
{This site covers all types of eating disorders, not just anorexia.}
Eating Recovery Center (ERC)
