By: Neveen Radwan
A year and a half ago, my then 15 year-old daughter was diagnosed with anorexia. It was the beginning of the Covid pandemic, and my extremely athletic daughter began worrying about not staying “in shape” while being in lock-down. She started running, exercising, and slowly cutting out pretty much every single thing she loved to eat. Within three months she had lost nearly 10 percent of her body weight, and her period had stopped for almost 6 months. For two months, we worked with a dietitian and therapist and tried to reverse what she had been doing. But at her next doctor appointment, she lost 3 more lbs.
The minute the doctor walked into the room, she told us she wasn’t *as* concerned about her weight, but her heart rate was dangerously low, and she would need to be admitted to the hospital that day. At this point, all I really knew about this disease was what I had learned in 8th grade health class, nearly 35 years earlier. We were both shocked, but under the pretense that it might only be 24 hours, we each packed a bag and headed to the Stanford Eating Disorder unit to “get it over with.”
The week she and I spent in that hospital turned into an ordeal over the next year and a half where our family would witness our child almost die multiple times. There were so many things that we were told and NOT told early on that could have changed the journey that we ended up on. As the saying goes, “you don’t know what you don’t know,” so I believe we were destined to walk this path. But, over and over, I thought of all the parents just starting out on this journey that COULD know. I thought of the parents I could tell the things we missed, or the things I didn’t listen to, so they could maybe have a shorter or easier journey than we did.
Today, I am getting ready to go home after having my daughter in residential treatment for almost 6 months. I am gearing up for the next part of our journey. But, I am also ready to share the things that I know could have made the last 18 months easier for those coming behind me.
What we were told #1: A few days after she was first hospitalized, my husband and I sat in a parent therapy group. The first thing we heard was, “Forget anything you *think* your child won’t do. The eating disorder will make them do anything and everything to get what it wants, including lie, hide food, and treat you in ways your child NORMALLY never would.
I specifically remember hearing the counselor saying that, and my husband and I looking at each other and essentially laughing it off. OUR daughter had never lied. She had never done anything remotely dishonest, and most definitely never, ever even said a harsh word to either of us. She even considered the word “crap” a curse word. OUR daughter was not the one he was referring to!
What we learned: An eating disorder doesn’t care how honest, naive or kind your child is. IT WILL turn them into someone you do not recognize, and the sooner you act accordingly the sooner you save their life. Watch every bite they eat. They will hide food in their pockets, in their sleeves, feed it to the dog, and do Houdini stunts you’d never imagine; even as you sit right next to them.
What we were (NOT) told #2: Several weeks after she was discharged from the hospital (the first time!), her period came back. It had been almost 10 months! The whole family rejoiced. We got her an Apple Watch as a present (see below) to monitor her heart rate, and we all believed she had recovered. What we didn’t know was that her period returning was the biggest trigger for her to relapse. It indicated that her weight was coming back, and that she was “fat”.
What we learned: The minute her period came back, we were no longer dealing with her, we were dealing with her eating disorder. While I continued to make food for her, I believed she was on the road to recovery, and no longer watched her as closely. She was doing remote learning, so she asked to eat in her room. Meanwhile, every meal I gave her was being flushed down the toilet, or thrown in the trash. In less than a month, she lost another 10lbs and she didn’t get another period for a year.
What we were told #3: After she lost the next 10lbs, she changed medical providers, who warned us that with the most recent weight loss, she was essentially back to “phase one”. This meant that we were to give her “no” control over plating, meal choices, or even to allow her in the kitchen during meal prep. It had been over four months since her initial hospitalization, in hindsight, no time at all; however, at the time we felt it had been forever. Hence, we felt the doctors were being over-zealous. Once again, we thought OUR daughter was an exception.
What we learned: As we learned once again, our child was NOT the exception. We didn’t do what they told us to do when we should have. We allowed her to choose (or essentially deny) every food we gave her. And as such, she began to eat less and less. Within a month and a half, she had lost so much weight and was so malnourished, that she began having such severe panic attacks that she would become catatonic at almost every meal time. The hospital I once dreaded was one I now begged to admit her again. However, the only place they would now admit her to was the adolescent psych ward.
What we were told #4: They told us, repeatedly, that our child’s actions and the things she would say were NOT hers. That her malnourished brain was essentially hijacked by a terrorist called ED, and was completely controlled by it. However, OUR daughter had never said a disrespectful word to us, or had ever lied. We never actually believed that she could.
What we learned: As she became more and more consumed with the illness, and lost more and more weight, she lost more and more of herself. She would scream at me, yelling at me that I was ruining her life, and that she hated me. There were times that I was almost afraid of her. It continued for months and months. As hard as it was to see and hear these things, it was imperative to remember that it WAS NOT her. I didn’t always remember, and it always hurt. But in order to survive this journey, it is something every parent of a child with an eating disorder must always keep in mind.
One time I weighed her and knew something didn’t seem right. I weighed her again, and realized she had put batteries in her clothes. She was hysterical, and promised it would never happen again, yet it continued to happen over and over again.
In addition, as she got sicker and sicker, she was restricted from almost all activity. She began to ask to go to the store with her dad and her grandma, both of whom she still enjoyed spending time with. When I joined them on one of these outings, I watched as she took off, speed-walking through the aisles, using her aforementioned Apple Watch to count her steps. Later, I would find out she knew exactly how many laps around Safeway, Costco, and Home Depot would equal a mile.
We learned the hard way that almost everything she did, and everything she said was led by her eating disorder. We had to ignore the hurtful things she said to us. And as hard as it was, believe in our hearts that anything and everything she told us was a lie.
Most important lesson of all: Eating disorders are mental illnesses that damage your child’s brain, heart and all their major organs. They are not caused by parents, and the ONLY medication to treat them is FOOD. You must feed them fat, carbs, and lots of calories; rinse and repeat. It will be hard. It will be gruesome. And it will seem impossible at times. However, if you remember that YOUR child is not an exception to what you are told, your path can be much easier.