We noticed our daughter was losing weight in the fall of her freshman year of high school, but didn’t think much about it. She was growing a lot, playing soccer, and seemed healthy. As the year went on, we noticed her diet changed, but she was taking a wellness class to learn about nutrition and focused on eating healthy. We applauded her effort. In hindsight, we will forever wonder how we could have missed so many warning signs.
Eating Disorders: The Warning Signs
By midwinter the weight loss was getting more noticeable. She was Nordic ski racing, but instead of getting faster as the season went on, she seem to be getting slower. We tried to convince her that she needed to start eating more. It still never occurred to us that she had an eating disorder. In the middle of the winter we saw our family pediatrician. While it was clear that our daughter had lost a lot of weight, her doctor said she was still in the “normal” range and scheduled a check-in a couple months later. We still didn’t think much about it.
We went on a family trip in April and it finally became very obvious that something was wrong. Our daughter was biking every day, but eating less and less all the time. There were times when we were traveling, and we couldn’t find anything she was willing to eat. By the time we came home, we knew that she needed help.
In retrospect, there were other signs. After ski season ended, she started working out in the gym every afternoon after school. She was a great student, but did not seem to be enjoying school much. She withdrew from her friends and didn’t talk much at home either.
Finding Help for Our Daughter
After the trip, we first saw a local therapist. Eating disorders were not her area of expertise, but she was a great place to start. It took a few more weeks after our trip to schedule another appointment with our family pediatrician. By that point, we were all aware that our daughter had an eating disorder. We needed to find more help.
Our pediatrician was very upfront that it was not her area of expertise. She worked hard to find us more help. We tried contacting several therapists. We couldn’t find any who had the time to see our daughter, or who did much work with patients with eating disorders. Several more weeks went by before our doctor referred us to Dr. Erica Gibson, a pediatrician and adolescent medicine specialist at UVM Children’s Hospital with expertise in eating disorders.
While most people would not think of eating disorders as emergencies, our daughter had already lost way too much weight and continued to lose around a pound a week. As parents, all we could do was watch and offer what encouragement we could while trying desperately to figure out where to get real help.
Our First Glimmer of Hope
We finally saw Dr. Erica Gibson in May. By that time our daughter had lost over 25 pounds and was dangerously thin. That appointment was our first glimmer of hope. We finally felt like we found somebody who really understood what was going on and could give us advice and steer us in the right direction.
Dr. Gibson explained the available treatment options for somebody at our daughter’s stage of the disease. Unfortunately, it seemed like most of the descriptions ended with the caveat that this treatment option doesn’t exist in Vermont. It seemed in the end that intensive outpatient treatment was our only option and the best options available were in Burlington. We live about three hours away, but could not find any closer resources. Fortunately, my wife and I are both teachers and we had the summer available to work with our daughter on recovery. We spent much of our summer driving back and forth to Burlington.
What We Learned About Eating Disorders
Around that first appointment, we learned a lot about eating disorders that we had never known. The statistics shocked us, We had no idea how pervasive the disease was or how long and difficult the recovery could be. Nor did we realize the large percentage of patients who never fully recover or whose lives the disease ends up taking. The doctors and therapists all told us that it was a marathon, not a sprint, but I think we clung to hope that it would be faster.
“Eating disorders are a parent’s nightmare.”
Not only are the diseases deadly and unpredictable, but the only “medicine” is doing exactly the hardest thing for the patient to do, eat. As a parent or loved one, you are tasked with watching your loved ones suffer physically when they don’t eat, and suffer mentally when they do, and your job is to force this suffering. We were constantly thinking there must be another option, but there’s not.
Dr. Gibson helped us find a nutritionist and therapist in the Burlington area who we worked with over the rest of the year. Our daughter felt immediate relief when she was finally able to talk to people who seemed to understand what she was going through. After several months of spending a day a week traveling for treatment, we were finally able to find a therapist In southern Vermont who specializes in eating disorders and reduce our trips to Burlington to every several weeks.
“We are now eight months into treatment and our daughter has come a long way.”
She has restored much of the weight she lost, is eating more regularly and is starting to rebuild some of her relationships, but she still struggles to eat enough on her own. We have resigned ourselves to the knowledge that even if all goes well, it will be years at best before we have any faith that our daughter can maintain her weight on her own.
“We now know in hindsight that our daughter had many of the risk factors.”
She was a freshman in high school, had a type A personality, and was an endurance athlete. We wish that we had been better educated and more aware of the warning signs. We have been quite open about our daughter’s experience with the disease and as a result, have become increasingly aware of how many people in our community have either lived with eating disorders themselves or have loved ones who have been affected. We have become aware of several other adolescent girls in our local community who are struggling with eating disorders and likewise struggling to find the help they need.
“In many ways, we have been lucky.”
Our daughter was quick to admit she had a problem when finally confronted and was open to treatment and therapy. We consider ourselves very lucky that she still lives at home and is not off at college or living on her own trying to fight this battle. We are lucky enough to have the time and resources to spend whole days traveling for treatment. It has become clear to us through our experience that there are not nearly enough resources in our area and every family affected by the disease struggles desperately to find help. It is our hope that we can be part of the solution by building awareness, helping to educate parents and community members, and helping to build expertise in our community so we have the resources available closer to where they are needed.