When parents are faced with an eating disorder in their family, alarm is a natural -- and necessary -- reaction. Alarm can spur action, and action can save the life of a child or young adult who's caught in the grip of an eating disorder. But what action should parents take? How can the family best pull together into the united front that's required to beat an eating disorder?
The answer will vary, depending on the circumstances. The age of the child, access to eating disorder specialists, insurance coverage, and the severity and duration of the eating disorder all are important factors. One strategy that is proven not to work, however, is delay. The sooner an eating disorder is treated, the greater the chance for speedy and complete recovery.
So, I thought I'd share with you a conversation I had recently with some friends who caught their daughter's eating disorder early, took action quickly and participated fully and effectively in restoring her to health.
Linda and Peter are the parents of Hannah, whose eating disorder took root during her sophomore year in college. I asked them to share their story as an inspiration to other families. Linda answered most of my questions first, then Peter and Hannah chimed in with their perspectives. I urge you to read all the way through to Hannah's last, wise words.
Me: How old was your daughter when she developed an eating disorder? What was the context?
Linda: Our daughter was almost 20 at onset.
Hannah: The context was an extraordinary sense of being adrift in the world -- a lack of place, passion and purpose that I felt to a really intense degree as sophomore year ended. These were foreign feelings -- terrifying feelings -- for me. That is certainly not a complete explanation, but it reflects the spirit of the situation.
Me: What were your first signals that something was wrong?
Linda: Restricting food (e.g., Chicken with no rice or sauce, salad with no dressing, no sweets) and excessive exercise. She had never run, but was running and doing hundreds of crunches a day along with belly dancing tapes, etc.
Me: What was your understanding of what was wrong?
Linda: I knew at the outset that it was anorexia.
Me: What was your plan?
Linda: I spoke to our daughter about it, and she said she was "just getting healthy and fit." She is really level-headed and bright, so we took a walk and talked about it, and I backed off. I was still concerned but thought that when she went abroad for her junior year, she'd relax a bit.
Me: Where did you turn for (the most useful) help and information?
Linda: Initially nowhere; as the illness increased in intensity, I turned to you, Aimee, and to local resources.
Me: How did events unfold?
Linda: Our awareness began in late May, and she left for an a cappella retreat in August (where her friends were quite concerned, too, but no one could break in at that point). I met her in NYC to go to the airport with her in late September. I was still concerned but was still trusting.
She went abroad for the semester and was Skyping daily for long periods of time. I knew this was atypical behavior. She'd report on long, long walks in London, but this is sort of a family travel activity, so it didn't alarm me as much as the long and frequent phone conversations. She was looking thinner on Skype.
One day she called and said she was scared because her arms were looking really thin. She didn't think she had anorexia nervosa because there were certain symptoms she didn't exhibit; we talked, and I told her I thought she did. She wanted to find someone who would weigh her and give her a plan to follow.
I told her to go to Student Health immediately, which she did. They weighed her and said she was fine. When she reported that to me, she said, "If they said that to someone who didn't want to get well, it could be disastrous." She knew she wasn't fine.
We asked friends here about contacts in London for her. The next person she went to was a sort of holistic doc who said it was gastrointestinal and sent her off with several hundred dollars worth of supplements. She was not doing well.
It got worse and worse. We were trying still to support her and let her make decisions that later we realized she couldn't make. Fortunately, she had an adult mentor here at home with whom she was in touch -- the producer for her High School Theatre Guild. They'd formed a strong bond during the four years of high school. In addition, they live on our street, and we are all friends. Han and Susan had been in touch while she was here in the summer, as well as while she was away. We are fortunate in having a strong long-armed network. Hannah reached out to several people once she got scared and decided to choose recovery.
Peter: That's an excellent point. Parents can't do it all -- no matter how much we want to. Having external support is very helpful. Fortunately for us, Hannah had friends from Ann Arbor who were also taking a semester abroad in London. One of them, whose father is a physician, saw her and said, "You need to go home." Her father then called us to reinforce the gravity of the situation. Also, my cousin is a physician, and her boyfriend is a trained therapist. They were willing to counsel Hannah via Skype, so she was getting at least some medical intervention before returning home.
Linda: But finally her mentor helped her write down and read the following to us: "Mom, I need help coming home." Immediately I asked if she wanted me to come get her. She said no, she could get home alone, but only as far as New York; she couldn't get onto the connecting flight home. So she, with help from friends from home who were in London as well, got packed and told the school there she was leaving five weeks early.
She flew into Newark, and when we saw her, we were devastated by how emaciated she was. When you hugged her, it felt like she might break. We had a team in place for her immediately upon arriving home.
She saw her general practitioner the day after we got back, a nutritionist two days later, an eating disorders doctor three days later and a therapist five days later. Within a week the team was in action. She was incredibly motivated to get well to be able to return to school by January. We had two months. The team said there were no promises, but if it was going to happen, it would be a full court press to get there. Initially she couldn't read a book or a magazine. She barely watched television. We went from appointment to appointment, and we ate.
We ate every meal together from the moment she called from London. We would have Skype meals together. When she got home, I ate every meal with her; I'd wait till she got up and have breakfast with her and then go to work. We'd Skype our snacks together; I'd come home for lunch and then go back to work and Skype the next snack before I came home. We'd then eat dinner and another snack later together. I think this was incredibly powerful.
Hannah: I think my parents left out one key piece of my support system: my best friends at home. These people are really unsung heroes. They sat with me through every tantrum and every tear, and many bites, too. They let me be what I needed to be and do what I needed to do and did not question or judge. This is tricky with a peer group, especially with girls. Part of my issue was extreme drive and a terribly competitive edge -- which is not, I think, all that uncommon in terms of eating disorders. But somehow, they didn't let my problem become theirs. They were truly, truly amazing. I think my parents were the most significant forces propelling my recovery, but my friends were absolutely key in helping me return to normalcy. There was a time when I didn't remember how I had ever interacted normally on a social level, but with superhuman patience and compassion, my best friends here guided me back, at my own pace. I owe so much to them.
Me: How long did it take to turn the illness around, once you got actively involved?
Linda: Two months. In order to return to school she had to complete the work she had missed in London; and in the two weeks before she returned, she was finally able to focus and work, and completed all the coursework for all four classes. (Her school required completion of two of the classes, but being the student she is, she pressed on and completed it all -- also part of this pattern, I imagine.) When she got back to school, they helped put a team together there. She continued to progress through the school year, and was rechecked at home in the spring, getting a clean bill of health.
Me: How are your daughter and your family now?
Linda: Really doing well. I continue to worry sometimes, but overall I know she's on top of it and working hard to stay well. How hard, I don't know. She is an adult, and onset was as an older child, so I don't have as much contact as a family where the onset is while they are at home.
Hannah: I'm not really sure what my mom means when she says she's not sure "how hard" I work now. I don't know if she means she doesn't know if I have to work at it, or if she thinks I'm not constantly vigilant. I guess to that I would say that I very much do work at it, but only when I have to. I am not "constantly vigilant" in the sense that I am always worried it's right around the corner. It isn't. But I have noticed that when I'm under a lot of stress, sometimes my brain starts to focus harder on food. Because of that, I have begun treating it as a response to stress and deal with it the way I would with any stress: focus on the actual root of the stress, and try to regain some perspective, especially because that stress is usually school-related, which is not, as it turns out, the end of the world (an amazing discovery)! So in that sense, I do work hard -- I work hard when I think my brain might even start going there a tiny bit, because I recognize it very well as an "other," a foreign thought in what is a generally sane and normal thought process. I can recognize it as a voice that is not my own, but I do not look for it -- because normally, it isn't there anymore, and I am extraordinarily grateful for that.
Me: What was the hardest part of battling the illness?
Linda: Watching her struggle not to measure, to eat full fat, etc.
Me: What surprised you the most?
Linda: First, that it occurred at all, and then her quick recovery, her complete commitment to her own recovery.
Me: What do you think would have happened had you not stepped in?
Linda: She would be dead.
Me: How has this struggle affected the bonds/dynamics within your family?
Linda: We have always been extremely close, and this only made those bonds even stronger.
Me: In your opinion, was there any particular element of intervention or treatment that made the biggest difference in helping your daughter get well?
Peter: Most importantly, Linda ate every meal with Hannah, and very patiently engaged her through each meal -- no matter how long it took.
But another important factor, particularly regarding Hannah's return to school in January, was our deference to the medical team, especially the eating disorders physician. We made it clear to Hannah that the medical team would make the determination about her readiness to return to school. We would defer to them and would not second-guess their decision, whatever it was. That, I think, allowed us as a family to focus on Hannah's day-to-day needs rather than having her look to us for the decision as to when she would be able to return.
Third, I made lots of mistakes. Despite lots of background reading and trying to learn about the disease, I said things that weren't helpful. But I was willing to learn, and because Hannah and I had full and open communication, these turned out to be inconsequential in the long run. I guess the lesson is that parents need to be fully engaged, willing to make mistakes and learn from them. When she was on the way to recovery, I was able to say that even though I wouldn't wish this on anyone, she would emerge as a stronger person for having gone through this. It's something I think Hannah has taken to heart.
Hannah: It's important for parents to realize that the whole structure of thought changes with the onset of an eating disorder. My incredible nutritionist described it as two voices: one was the eating disorder's, which was loud and steady in my ear. The other was my "true" voice, the one I had stamped on so tirelessly with my eating disorder. But what she wanted me to believe was that it was there, and that eventually, with a lot of work, I could learn to listen to it again. That may seem simple, but I think it was the hardest step of the recovery process -- and it was one that no one could do for me.
Parents absolutely should be aware that it's not just the eating mechanism that is disordered: it is also the brain. It took enormous energy and determination to hear my true voice and to believe that I could rely on it to bring me back to health. It took a leap of faith and a lot of trust in myself, and that is where parents, I believe, can really learn something.
It's not just about eating with the disordered person. It is not even necessarily reminding them of how they "used" to be or what counts as "normal." That just made me feel defeated and frustrated and lost. But what they can do is to remind their son or daughter that he or she has always known what to do, and although it might be lost, it is never gone. Sometimes it's hard to hear, and even harder to force yourself to listen. But it's about supporting the whole person, the person who laughs and the person who loves art and the person who climbs trees -- it's all of those little things that make up the foundation of a person that can eventually lead back to wholeness. Parents can play a huge role in supporting the child in such moments of faithfulness to self. It is not about jumping on them or yelling, "That was normal!" Rather, it is about creating a positive and safe environment in which to explore that self again, to find it. That is the true work of recovery.
My dad says at the end that this helped me to become a stronger person. I agree, but it's more than that. I have become a more elemental person: a person with a deeper connection to my roots -- both personal and familial. I feel that this experience allowed me to reconnect with the fundamental aspects of who I am, because it was remembering those things, strengthening them, listening to them, believing in them, that brought me to where I am today.
I don't like to say it brought me "back," because with an eating disorder, there is no "back." I am undoubtedly different, but the elements of who I am remain. That is why I believe that family is fundamental to the process -- parents are part of that foundation, and having had my parents believe so fully in this process of recovery carried me along when I could not believe. They are part of my fundamental being -- after all, they taught me everything I knew before school, friends, the world entered the picture -- and so they are a fundamental part of the recovery process as well. I knew I could count on my parents' voices, even if they were upsetting or difficult to hear. I knew those voices were not the voice of anorexia. And so until I heard my own again, my parents' voices created an incredible connection to my roots, to who I was striving with all my might to be.