Things I Wish I Knew When I Learned My Young Child Had an Eating Disorder

            My daughter's eating disorder was discovered 3 weeks after her 7^th birthday. I wish someone could have prepared me for how our lives would change. After we were turned away from an eating disorder center because Laina was too young for their program, I did Family-Based Treatment (FBT) on my own, with the help of the internet and advice from a friend. This journey could have been easier with certain pieces of knowledge.

            Such as: This is going to be awful. Each and every day. Multiple times a day. I was so caught off guard by how utterly difficult it was going to be to sit with my child every 3 hours and coach her through each bite. “Keep eating.” “Chew and swallow.” “Take a bite.” I have said these words thousands of times. And it was horrible each and every time. Instructing a child to eat, chew, swallow and repeat when they have previously been able to do these things without your participation is awful. Every second felt like it was wrong. I was not prepared to feel like a failure every 3 hours.

            And I didn’t know every meal would take 2 hours or longer, and every snack would take about an hour. I couldn’t conceive that that was possible! I’m the no nonsense mom and surely after a day or two she’d see that there was no getting around eating, right? Wrong. That ignorance rattled me. It was the beginning of summer, and I was feeding her breakfast, snack, lunch, snack, dinner, and snack. I’ll do the math: nine hours of sitting with her, coaching her through every bite. And in the beginning, nine hours was a good day! Some meals took 3 hours or longer for Laina to consume, with no break afterwards as I then immediately needed to prepare another plate. Feeding every 3 hours means from when the meal starts, not when it is over. Virtually all of my time was filled with planning, shopping, cooking, plating and supervising her meals. Cooking became a chore and I have little affection for food right now.

            But it wasn’t as though it was only the time investment that was difficult. It was the screaming. I didn’t know my child would scream such intense things at me like “I’m not eating!” “You can’t make me eat!” “I’m never eating again!” “I know you hate me!” That last one was always the finishing move. It gutted me each time she screamed it. And she screamed it daily, multiple times a day. When you are fighting to save your child’s life and they scream at you about how you don’t love them, it feels like a bullet dipped in poison and shot from a revolver at close range has hit you right in the chest. I didn’t know that would happen. And I didn’t know in the same breath she could scream “You are mean!” and then a tenth of a second later gently and earnestly ask “Can we go to the library today?” It gave me endless whiplash, and would often take me a full day to get over the more intense explosions.

            Another thing I would have liked to know is how everyone who was told of our situation would stare at me as though I said my 7 year old child had suddenly sprouted a conjoined twin. “No,” they’d say. “That isn’t possible!” Well, my dear, I wouldn’t make this up. I know this isn’t common, and that’s good news, but unfortunately it is real. The amount of judgement, side glances, crinkled up faces trying to process my words, and skeptical responses I received was staggering to me, and made me feel alone.

            I wish I would have known just how alone the medical system would also make me feel. When my daughter was caught throwing her lunch away, the spark that ignited my knowledge of her ED, I immediately made an appointment with her pediatrician. She had treated Laina since she was a month old, and had known my husband since he was about that age as well. She had a gentle, reassuring tone whenever I was worried about an aggressive cough or a strange-looking rash. I fully expected the same response with this issue. But no, I was told I was the cause of all of this! It was my need for power that was creating a problem where one didn’t exist. She even told me to cancel my appointment with the ED center, who as I’ve said, turned us away immediately when I asked for help. I wish I would have known how clueless the medical system is. Maybe I wouldn’t have taken their actions so personally.

            It would have been useful to know how long this battle would rage. I thought it would be so simple. Food goes in, mind heals, done and done. People said I was so lucky! Attacking the ED so early and so young would make this journey much, much easier than with a teenager! While I haven’t parented a teen through an eating disorder, I certainly would not agree that we are lucky, and this is not easy. This is terrible and has been terrible every day for over 14 months. Though she’s fully weight restored, she’s had no improvement in her mental state. Her daily goal continues to be to eat as little as possible, and to look for opportunities to get away with not eating. I now accept that fighting her ED will take at least a decade. Knowing that earlier would have saved me from feeling like I’ve failed her every day.

            I didn’t comprehend how sneaky and tricky a 7 year old with an eating disorder can be. She would fake sickness to get out of eating, but that was fairly easy to spot. She’d say she had to urgently go to the bathroom and I felt like a monster to say no, but then I’d find mouthfuls of unchewed food in the garbage can. She’d wait for me to turn my attention to her little sister, and try to stealthily move towards the kitchen trash like a ninja. She would empty her lunch containers into the garbage at school. She pulled each and every trick in the invisible eating disorders guide book. I far underestimated the calculated way she would avoid meals! Yes, I removed the trash can from the bathroom. Yes, I instituted a bathroom before meals policy. Yes, I brought her plate with me if I had to leave the room. Yes, I scrutinized her lunchbox containers for crumbs, knowing a complete turnover into the trash would take away the crumbs, too. I even removed the kitchen curtains so I could see her reflection in the glass if I had to turn my back to her. But I know there are potentially even more tricks that I have yet to uncover. And as we continue to fight this battle, I must continue to be observant for her tactics.

            It would have been also helpful to know the impact my daughter’s eating disorder would have on my marriage. This last year has been incredibly trying. My husband took months upon months to see her ED as real and to fully believe that my actions were necessary. He didn’t do the hours of research I did on FBT, he wasn’t present at every one of her meals like I was, and she didn’t scream at him for hours every day. Early on he said things like “You are feeding her the wrong foods! If you give her pizza, I guarantee she’ll eat it.” He was uninformed, wrong, and very vocal. A winning combination. This led to a lot of arguing until we got onto the same page, and stressed our marriage until I thought it might not survive.

            Lastly, I wish I would have understood what this would do to my sanity. I try to be calm and steadfast through this, but I also have moments I’d prefer to not mention. Perhaps I’ve screamed back until my throat hurt. Or had my whole body shake from frustration when we were 3 and a half hours into her eating a bowl of oatmeal. I once gave myself a timeout in the laundry room for 20 full minutes while I panted and paced like a caged cheetah. She loves to bring up that event whenever possible! I feel regret and embarrassment all over again, and wonder where my sanity went. I’m an adult and shouldn’t I be able to handle this without breaking down? I now understand that only a saint can remain sane when their child has an eating disorder. I really could have saved myself such heartache if I’d known all of these things early on.